I have a friend who is Stage IV breast cancer. This is her second round with cancer. She has lobular carcinoma. She is Stage IV. The tumors are on her spine, hips, pelvis, chest wall and lymph nodes. Based on this set of facts, what is an anticipated life expectancy for someone in this position? Will this eventually spread to internal organs? if so, any time frames?
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3/ 4/09 9:48pm
Cindy, there's just no way to predict anyone's life expectancy, no matter how many facts you have. Some women live for many years with stage IV breast cancer. Others don't. Which group will your friend be in? No one knows. Until they stop treating her - i.e., they stop the chemo or Herceptin or anything else she's taking - they still have hopes that she'll live. It's when they stop treatment and suggest hospice that you know her time is limited.
All of that said, I'm sure this diagnosis makes you realize your time with her — everyone's time with her — is all the more precious, because it might very well be limited. Treat each meeting as if it's the last - not with sorrow, but with joy that she's still with you. Be thankful for each day with her. And pray and hope for the best outcome possible. Good luck to you both - PJH
12/14/11 5:32am
Dovie, I'm so sorry you're all having to go through this. Each of us handles severe health challenges in a different way; unfortunately, some are so frightened (or so confident) that they ignore the small signs that something's wrong; and that "something" becomes devastating, as in your mom's case.
It takes strength NOT to become bitter in a situation like this, so it's not surprising; it sounds like she's had other life issues contributing to how she feels, as well. As you say, all YOU can do is try to love her. But a professional could offer other support; would she be willing to go to counseling? Probaby not if you suggested it, right? But what about a referral from her doctor? Hospice has been incredibly helpful to a lot of people, and it's not just for those within days of death. Many hospitals have a palliative care unit that can be hugely supportive to patients such as your mom. So, perhaps a bit of gentle steering could get her into a program like that.
As for the drugs - the amount of time they're prescribed for really doesn't say anything about life expectancy. Many doctors don't want to share their feelings about "how much time left," as they feel it becomes a self-fulfilling prophecy. Perhaps if you asked her oncologist directly, s/he would give you an educated guess; but at the end of the day, as you say, "who knows?"
Again, I'm sorry for your troubles. Please come back here any time; we're here for you. PJH
12/14/11 5:51am
I don't know how much your mom is letting you be involved with her doctors and decision making issues. The best thing for her would be to get involved in a palliative care and/or hospice organization for pain management and counseling. She may be wishing for death because she fears an extended time of pain. The palliative care/hospice folks are THE experts in pain management. Another option is an anti-depressant or anti-anxiety medication.
As you say, no one knows how much longer she might live. While the cancer was only in her bones, the answer was years. Once the lung is involved, the prognosis is not as good, but it may be that the spot will stay small and that she will be able to do well medically indefinitely.
Your story sounds very familiar to me because I had a close family member who went through a similar process with her cancer. Ultimately, each of us chooses our own way of dealing with serious illness and death. It was hard for us to honor our family member's method of dealing with cancer and imminent death by denying the whole thing. But eventually we realized that we needed to let her do it her way.
Your mother is lucky to have you there loving her in her bitterness. I know it will be hard, but hang in there with her. Let any mean comments roll off your back and do what you can.
12/14/11 5:52am
I don't know how much your mom is letting you be involved with her doctors and decision making issues. The best thing for her would be to get involved in a palliative care and/or hospice organization for pain management and counseling. She may be wishing for death because she fears an extended time of pain. The palliative care/hospice folks are THE experts in pain management. Another option is an anti-depressant or anti-anxiety medication.
As you say, no one knows how much longer she might live. While the cancer was only in her bones, the answer was years. Once the lung is involved, the prognosis is not as good, but it may be that the spot will stay small and that she will be able to do well medically indefinitely.
Your story sounds very familiar to me because I had a close family member who went through a similar process with her cancer. Ultimately, each of us chooses our own way of dealing with serious illness and death. It was hard for us to honor our family member's method of dealing with cancer and imminent death by denying the whole thing. But eventually we realized that we needed to let her do it her way.
Your mother is lucky to have you there loving her in her bitterness. I know it will be hard, but hang in there with her. Let any mean comments roll off your back and do what you can.
3/ 5/09 10:37am
Hi Cindy. There are some positives in the information you've provided. Stage 4 is serious, but is even more serious if there is cancer in the brain, lungs and liver - which you haven't included in your list. In general a figure of 20% is given for 5-year survival of stage 4 breast cancer, but you have to think carefully about this. You can't tell whether a person will be one of the 20% or not. A friend of ours had leukemia about 10 years ago and was given a 7% chance of survival. He is still with us. Look also at Lance Armstrong. Finally, I recently met a woman at the oncology clinic who has been battling stage 4 breast cancer for SIXTEEN years. Sometimes it seems there is no rhyme or reason.
The value of statistics, to my mind, is in allowing you some hope while keeping you realistic. The doctors these days are pretty good at keeping people alive and who knows what breakthroughs will be made in the coming years?
To help your friend, I think you need to gently share information with her and to help her frame questions to ask her oncologist. If I were your friend, I would be wanting to fight cancer with every weapon at my disposal and to find the strength and courage to face whatever the future brings. You have it in your power to help her do this. Be sensitive to what she needs from you.
Best of luck to you both
Sue
4/ 6/09 11:11pm
My wife is 34. She has been fighting for her life for 13 years. It started in her breast when she was 21. Doctors removed the breast and treated her. A couple of years later it came back in the bone then the brain. Last week we found out she has a diffuse live(full of cancer). In one week she has gone from a 4 to a 9. She can not think straight,has yellow skin and eyes, and lots of pain. We have called in hospice to make her comfortable. I guess what I'm saying is nobody knows how long. 2 weeks ago we were at my sons rodeo haveing fun. This last week has been a nightmare. I have a 16 year old daughter and a 13 year old son. They are haveing a really hard time with some regrates about the ay the took her life for granted. I have alot of regrates also. So love your friend and tell her family to live ever moment because you never know. Even before the past there life has really ended. Best of luck
2/ 5/10 12:46pm
Aaron-
I hope your family is sticking by eachother durring this time. I know your response was almost a year ago now, but it has hit home for me on this day Feruary 5, 2010 as my mother in law has been diagnosed with advanced metastatic breast cancer. My soon to be husband lost his fathter to lymphoma about ten years ago now (my fiance is only 28) and is now faced with this hardship. While we still carry hope, we also understand that God's will be done. Your message is so true that you need to love and live these moments as you would never have them again. I cry as a write this because the selfish part of me wants her here and wants a miracle. I will keep your family in my hearts and may your children try and find comfort in you.
10/19/10 2:03pm
im so sorry to hear about your wife. im a 49 year old woman with stage 4 breast cancer with 3 kids 17,22&26 im a single parent and im working and thinking positive but i feel bad right now and with no hope but the fact that i'm alive right now. I wish you and your family the best and will pray for you. bonnie
10/19/10 4:01pm
Bonnie, hang in there. Where there's life, there's hope - we never know when the cure (or the next great treatment) will be found. Best of luck to you - PJH
10/19/10 8:11pm
thank you so much PJH. I appreciate your reply. I'm trying to think positive. My cancer doctor said that we are getting rid of the cancer, my other calcium doctor said that once the cancer has spread to other parts of the body, its just a matter of time before death. to live it up. but i cannot live it up because im working to keep food on the table and medical insurance for my kids. if i give up and quit, then we will be homless in addition to me having cancer. my kids are in denial and when i pass, im afraid for them. who will take care of my kids when im gone? Life is so unfair. I wont let this cancer take me and i'm going to give it my best fight ever to stay alive. Staying Positive and thinking my self well, and thinking there is hope and that the doctors may come up with something soon and to hear that from you also, gives me hope. thanks PJH thanks for the hope. bonnie
10/19/10 8:30pm
Bonnie, you're experiencing the worst fear in the world - fear of leaving your kids alone. You know, thank God they have one another... is there any other family around? I'm also glad that they're a bit older; old enough to ultimately be able to figure out how to move forward, should you not be there. But as I said, there's always hope. I know there are many women in stage 4 that have been keeping cancer at bay for years and years... I truly hope you're one of them. Best - PJH
5/ 3/10 8:29pm
Cindy D,
I can realte to what your friend is going through right now and how you both feel. I now have Stage IV lobular breast cancer and my Dr. told me the prognosis was about 5 yrs. It has spread to 3 places in my spine, my femur bones and ribs, hips and on my lung where the tumor has grown upward in between the lung and chest wall and is at the top of my breast bone as a lump. I'm on Femara and receiving Zometa via IV. My original oncologist and breast surgeon said that you can live with stage IV cancer for 10-15 years. I had to switch doctors/hospital because I have NO medical insur. and this hospital has financial assistance...THANK GOD. I lost my job in 2006 and haven't been able to find another full time job or even a temp. job now. I'll be 63 in 2-1/2 mos. and I guess my age is against me as far as a job now. My original breast cancer was in June 2000 which resulted in a masectomy and 5 mos. of chemo. Was "cancer free" Jan. 2001 and then went on Tamoxifen for 5 yrs. Being that I went for about 10 yrs. before it came back, I consider myself lucky but I intent to fight it this time the same way I did back in 2000. I think it'sall just a matter of time for all of us and when God thinks it's time he takes us......we just need to enjoy what time we have left as much as we can and you need to enjoy your friend as much as you can too. There are improvements every day in cancer treatment and we all need to hope there will be one very soon for this terrible disease.
Bonnie B
7/ 8/10 9:09pm
I have battled breast cancer since 2001. I had chemo,mascetomy,more chemo and radiation. For the next 7 years I went for my exams and wondered whether the cancer was gone. I started to fell awful, complaining at each doctors visit and finally I must have convinced him and sure enough the cancer had returned. I started treatments all over again. Chemo and radiation weekly. Now since 2008 I have battled again. Just until recently I did not know the life expectancy and for some reason I asked my husband what it would be. He had been told at the offset that it was 18 months. I have passed that point but it is coming to the time where I am unable to take chemo treatments due to the side effects, mainly the heart effect. My ejection ration has been as low as 32. Follow your heart and pray daily. Prayers have been answered.
7/ 8/10 10:10pm
I add my prayers to yours, Sheena. Blessings to you- PJH
7/ 9/10 8:26am
I'm thankful for the nine years you have survived despite the original prognosis. I hope knowing that others who read your post here will be praying for you helps give you strength for the next steps in your journey.
8/ 1/10 7:34pm
Hi Sheena....your note touched me....I have stage IV breast ca after 7 years and I have gotten state of the art treatment....I hope you are hanging in there. I have decided not to take any more treatments as I think it is in my children's interest not to do so...love
8/23/10 10:59am
Hey..sometimes you type in something in the seach engine and you read peoples comments but you never contribute anything. Today I am sitting at my desk with tears in my eyes waiting now for over 4 weeks to get some results on the testing that should've been done on the mom's breast tissue (masectomy for Infiltrating lobular carcinoma was done 7.23.10) and reading all the comments on this blog and I just want to say thanks to all the persons who take the time to write their feelings & experiences because it really helps - by writing we give each other hope and moral support. Personally I think we must remember to pray for God's will in our lives and have faith that his master plan is best.
8/23/10 4:05pm
That's crazy she hasn't gotten her pathology report yet - did they say they're backed up, or...? She probably can't start treatment till the path results are in, so sounds like you're all on hold. I'd start calling every day to politely ask, "Are Mrs. X's lab reports back yet?" Maybe they'll get tired of hearing from you and grease the appropriate skids. Best of luck - and come back whenever you need to connect. We're here for you - PJH
5/28/12 12:45am
Hi Adrienne. Curious of your age, and where you get the state of the art treatment. My sister, Rae, age61 has recently been diagnosed with stage 4 breast cancer. She started her first of a 18 week chemotherapy. I am researching on any hope and help I can give her. Thank You!
5/28/12 5:11am
Becky, research has brought us to the point that many women with stage IV breast cancer are living with it for years, not months; hopefully Rae will be one of them. It would be great if she could receive treatment at a Comprehensive Cancer Center, one of 50+ hospitals nationwide designated by the government as best-in-class. Statistically speaking, women treated at a Comprehensive Cancer Center have better outcomes than those treated at other facilities. So, check the list; hopefully there's one near her. Good luck to both of you - PJH
5/28/12 2:05pm
Thank you, pjh! We will definitely do the research on it. Again, thank you so much!
5/28/12 6:19pm
I wish you both all the best, Becky. Remember, we're here for you - if you have questions, need support, or just want to vent... Take care - PJH
5/28/12 10:30am
There is quite a bit of hope these days for Stage IV breast cancer patients. This article about treatment for Stage IV breast cancer will give you some background information. Some people's metastatic cancer responds very well to chemo and other treatments, and they may even eventually show no evidence of disease. Much depends on how extensively the cancer has spread and what organs to which it has gone. As PJ has said, comprehensive cancer centers are usually the best facilities in these situations. Don't hesitate to ask for a second opinion if your sister has to choose between treatments. I hope she has a good response to chemo.
9/ 8/10 11:30am
I stumbled across your posting while browsing the internet for information on life expectancy, etc. and it really hit home as my wife has been going through the same things. I'll relay her story, from my perspective, in the hope it might help someone, and also maybe someone out there can give me some help and ideas.
My wife has stage 4 metastatic breast cancer that has spread to her brain, lungs, and now we found out she's got a couple of spots on her spine and one inoperable in her neck, I guess at the bottom of her skull. She's been battling cancer for over 8 years. She had a lupectomy in 2003, followed by two rounds of chemo, and 7 weeks of radiation. And for the next almost five years she was fine. All during that time she'd been in maintenance mode on Tykerb.
Then in 2007 she had what appeared to be cold symptoms with a lot of coughing. After regular treatments for a few weeks, she went back in for an examination, and they asked for X-Rays, then MRIs, etc. and they determined that the cancer came back in her lungs. She restarted Chemo again, on top of the Tykerb.
Then she insisted on having a head scan, against her oncologists will. And they found that the cancer had spread to her brain, with just a couple of spots at first. After many tests and consultations, they scheduled surgery to remove the tumors. But at a prep visit for the surgery, they did another MRI and cancelled surgery as there were now more tumors than they can handle with surgery.
They suggested Gamma Knife, which she did over the course of many sessions spread over a couple of years, where they treated over 30 spots. Most of the treatment went well and the tumors went away. She was also taking Avastin and at one time or another she had also taken Herceptin, Zelota, and other stuff. She also had to monitor her heart, and she had to stop treatment a couple of times as her heart ejection ratio dropped down to 29%.
But a few months ago they found that a few spots looked active, and there was swelling around them. They weren't sure if the tumors had come back, or these were side effects of the treatment.
She started having seizures and blackouts. They gave her steroids to shrink the swelling, and seizure medication. That caused her to gain a lot of weight, and have other side effects. Then after determining that the spots were active tumors, they suggested full brain radiation, which she had been avoiding from the beginning.
She just competed, a couple of weeks ago, about 25 sessions of full brain radiation. First she lost her hair, again for the third or fourth time. Now she's been having pains in her back and pelvic area; constipation, and bladder problems. She's been also throwing up to the point of dehydration. She's been to the ER three times already in the past two weeks, and she's been to her oncologist several times so that they can put an IV and get her hydrated again, and give her some meds. They put a catheter, several times, to drain her bladder and relieve the pressure nad maybe the pain. Now she's had one for the past five days, but the pain is still there.
She's done several MRIs, Cat Scans, Pet Scans, etc. and they still don't know what's causing the pain. They keep saying that nothing alarming shows up on the scans.
Yesterday they started talking about hospice care, and that scared the hell out of me. I don't know what to make of it. I understand that her cancer is most lilkely terminal, but I am still hoping for a miracle, and the talk of hospice care shuts the door to that...
And to add more complications, I'm 3000 miles away. Unable to find work for several years in California, I finally agreed last year to take a job in DC. That's how I can provide for her and the kids, including insurance. We didn't want to move her so that not to disturb her treatment, her doctors; clinics and healthcare providers in the area know her, etc.
I've been going back every few weeks; I'm going home this Saturday for 8 days. I'm between the rock and the hard place And I don't know what to do...
Sorry for the long post, and thank you for reading...
10/19/10 8:19pm
hang in there eazman, i know what you are going thru and ill pray for you. keep checking in here and we can maybe help you get thru this. I'm praying for you right now. i have cancer but i can pray too! and i love this site. im going home where there is no computer, but ill be thinking of you and your family and praying for God to release the pain and cancer. take care...bonnie girl.
3/ 4/12 4:31pm
Yes I agree with u prayers can help.I was dignose in Oct of Stage 4 breast cancer.
3/ 4/12 6:11pm
Tee, know that peole who read your comment here at HealthCentral are keeping you in their prayers. We hope that you have found appropriate medical treatment to do everything possible to reduce or stabilize your cancer.
5/21/11 7:51pm
All of these stories are both heart felt and scary for me, since my mom has stage iv breast cancer and it has spread to her lungs, liver & brain. Im her only child & we are terrified of what anymore scans could show. Though the doctor says it's treatable & the spots aren't plentiful, it's still very alarming & he feels like he has let us down. We keep praying & hoping for the best. She had a mastectomy last year and is on her 2nd chemo drug. It's hurtful because none of this would be happening if it wasn't for an irresponsible doctor from Kiaser (BeWARE) telling her that the lump she felt was "normal." 2 years later we found put it was cancer. I will keep all of you in my prayers & no matter what, we have to keep fighting for a cure & spread awareness!
5/21/11 9:11pm
I'm so sorry you and your mom are having to go through this; I hope the chemo holds the cancer at bay for as long as possible. With stage 4, there's no telling what will happen, especially when it's spread to multiple locations, as it has with your mom. Take it day by day, week by week, and try to stay positive, to believe the drugs are working and you and your mom still have some good days ahead of you. I'm sure many women here will be keeping you in their prayers, too... Take good care - PJH
4/ 5/12 5:27pm
Hello my name is liz my mom was recently diagnosed about a year ago with stage IV breast cancer mets to the pelvic and spine she is currently taking arimadex for hormonal therapy and zometa for bone inhancement. what is the life span on a patient with my moms condition??
4/ 5/12 6:41pm
There's no simple answer to that question; there are a lot of things about your mom's diagnosis and treatment only her doctor knows. Some survivors pass away fairly quickly once they're in stage IV. Others live for years, even decades, continuing to treat the cancer as needed; it becomes a chronic disease, like diabetes. Hopefully your mom will live a good long time; I'm glad you're there to comfort and support her. Take care- PJH
4/ 5/12 7:44pm
Hi Liz,
My sister was diagnosed with stage IV breast cancer that spread to the bones two years ago next month and the doctors think she had had the original tumor at least 2 years before that. She has taken several types of treatment on and off for the past 2 years and her most recent scans look really good. She has had alot of damage to her slower spine from tumors and her bones are weak but she is alive and the cancer is shrinking and even gone from some spots. There is hope...believe me! She walks like a little old lady and she is only 43 but she is hanging in there!
4/ 5/12 8:38pm
Thank you soo much it has been along journey with my moms battle against cancer. she will continue her battle against this disease in hopes one day there may be a cure. at times she is very sore only when it comes to getting close to treatment. when she was diagnosed a year ago i felt my whole world falling down right before my eyes over the past year i have learned so much about her disease. im currently studying digital imaging that way i can help others with this disease. again thank you for the info and god bless.
4/ 5/12 10:22pm
Good for you, going into digital imaging! The cancer experience - whether you're going through it yourself, or with someone you love - seems to open your heart to others, and wanting to help. I hope your mom can remain relatively pain-free, and that you have many days together still to come... PJH
4/ 5/12 10:20pm
Jen, thanks for posting about your sister here - it's gret that you can give hope to others going through this... much appreciated. Take care - PJH
6/16/12 2:50am
Hi my sister was recently diagnosed with stage lV breast cancer, it has spread to her spine, shoulder, collar bone and rib. Right now they are doing radiation and giving her the cancer drug rimidex. She is having lots of back pain and can barely stand. She has an appt at Dana Farber in Boston for a second opinion, she'd like to get in a clinical trial. I wanted her to go to the Cancer Treatment Center in PA, but they do not accept her insurance. Just Awful!
This week another sister was diagnosed with stage 3 melanoma, she will need chemo for one year and is also seeking a clinical trial at Dana Farber in Boston. This is all scary for me seeing my sister's go through this they are 53 and 55 and I am 50. I'm praying for them and I am here for them.
6/16/12 5:31am
Susan, I'm so, so sorry for what you're all going through. Luckily, your sisters are accessing one of the very best cancer facilities in the country; they'll get the best treatment possible at Dana Farber. Stage IV breast cancer that's spread to the bones, as has your sister's, is often treatable for quite some time, so I hope the docs find something that slows the cancer's progress, as well as effective pain relievers.
As you know, your sister's breast cancer increases your risk; so you should be more vigilant than ever about keeping up on your mammograms, noticing any new lumps, etc. Again, I'm sorry this is happening, but so glad you're there for them. Take care - PJH
6/16/12 8:14am
Susan, I know all of this is very scary, and I am sorry that you and your family have been hit with two life- threatening illnesses at the same time. Fortunately, at Dana Farber, your sisters will have access to some of the best cancer doctors in the country. Breast cancer that has spread to the bones has the best outcomes of all the Stage IV breast cancers. I know people who have lived for years with bone mets. As a Stage IV patient, your sister will probably always be on some form of treatment, but there is a good chance that she will be able to live for years with a high quality of life. You will know more after talking to the doctors at Dana Farber and getting their opinion. I follow melanoma news because my husband had it. I don't know enough to give you specific details, but I know there are new treatments offering hope on the melanoma front. I hope the doctors at Dana Farber will have some good news about treatment for your sisters.
6/16/12 12:58pm
Susan,
My sister was diagnosed 2 years ago this month with metastatic breast cancer with tumors on her hips, spine, shoulder, femur and she has undergone several types of treatment including chemo, insulin therapy, radiation, etc... she has severe back pain and pain in her hips but the tumors have either decreased in size or some of them have become undetectable. She looks pretty good and is able to socialize etc with proper pain management. For her, the biggest problem seems to be finding consistent energy to get the every day stuff done. But when I saw her recently I was amazed by how healthy her hair and face looked despite her treatments. I am sure your sisters are fighters and will get the support they need to get through this!
8/ 5/12 4:28pm
hi, my name is connie and I was diagnosed last nov. with breast cancer. Than it mets to my pelvis in may of this year. I did take arimidex and now on faslodex. I'm 70 and very worried. I had colon cancer in 2000. Just WHEN is it going to my bones?
8/ 5/12 7:54pm
Connie, it sounds like the cancer has already traveled to your bones. But don't despair - with proper treatment, many women with breast cancer that's metastasized to their bones live a good long time. Please ask your doctor about Afinitor, a new drug just barely on the market that, in combination with the aromatase inhibitor Aromasin, is supposed to work well in stopping further metastasis. And, if you haven't done so already - see if you can get a second opinion at a Comprehensive Cancer Center. These are cancer canters designated "best in class" by the government, and women treated at them generally have better outcomes than women treated at local hospitals. I'm sorry you're having to go through this – please come back here any time you need support. We're here for you. PJH
6/ 1/12 1:04pm
We should not lose our hope. Mental sprit and prayer are very helpful for survaiving well. We should remember that all we are leave this world, some are early and some are late. But we must leave this world, so we should worry for that.
12/28/12 7:16am
My wife has been battling breast cancer now since Nov 2010 and was has stage IV with 9 tumors in her brain. They foudn them 6 months after her chemo treatment ended. She is trying every thing she can to fight the cancer. Even to the point of changing her deit to all natural foods. It is just hard to look at her some times knowing that she is this sick and does not act sick 80% of the time. She was told that her life expectancy was a year maybe 2. We are coming up on her year in june and I dont know what to do.
12/28/12 7:24am
Brandon, I'm so, so sorry for the pain you're both going through. Cancer is vicious, and some of us draw the short stick – just randomly, it seems. There comes a point when there's nothing you can do; you can only keep moving forward, and see what each day brings.
I hope you can try to live in the moment; worry and stress are eviscerating, and it's hard to avoid them in your situation, but all they do is make things worse than they are. I pray your wife continues to feel well much of the time, for as long as possible. And I'm sending you both strength to get through this as best you can. Please come back here if you feel the need for support, any time; we're here for you. PJH
P.S. You might find our Internet Resources for Breast Cancer Husbands a useful way to connect with others going through the same situation.
12/28/12 7:55am
We are trying to. We are going to Mexico on the 17th for a week so that she can go to the mayan temples "one of bucket list things to do." And she goes in for a whole body scan, a bone scan and a head MRI in march to see if there is any new spots of cancer and to see how the 9 tumors are doing in her brain after gamma knife surgery. Thank you for your prays and I will look at that resource. I just feel lost but trying to stay positive as I can for her and our son.
12/28/12 7:55am
We are trying to. We are going to Mexico on the 17th for a week so that she can go to the mayan temples "one of bucket list things to do." And she goes in for a whole body scan, a bone scan and a head MRI in march to see if there is any new spots of cancer and to see how the 9 tumors are doing in her brain after gamma knife surgery. Thank you for your prays and I will look at that resource. I just feel lost but trying to stay positive as I can for her and our son.
12/28/12 8:47am
Brandon, I am so sorry that you and your family are going through this terrible time. Keep in mind that no human knows how long your wife will live. I know so many people who lived years after the "expiration date" the doctor gave them. If you have not consulted with a comprehensive cancer center to make sure that she is getting the best treatment for her brain mets, you might consider doing so. Even if they have nothing better to offer than her current treatments,you would feel confident you had done the best you could. It sounds like you may not need it yet, but I would also suggest that you talk to your local hospice about the resources they offer when the time comes. Knowing that there are people who are experts in pain management and grief counseling may ease some of your anxiety about how you are going to cope when she is no longer feeling as well as she is now. I hope that she continues to have more good days than bad for a long time.
12/28/12 9:22am
Oh I know that no one can really tell how long you will live. My worries are more coming from how fast it moved after treatment to her brain. She stopped her chemo in the end of jan of 2012 and had 6 tumors in her brain on june 11, 2012 and a month later when they did the gamma knife surgery after 10 treatments of wbr they found 3 more. And did all 9 of them in one treatment of gamma knife. Which from what I have read they dont like to do more then 3 at a time. For going to comprehensive cancer center the Dirctor is already working on her case along with her team of drs at the cleveland clinic. And all of them are also working with her homeopathic dr. Thanks for all the extra info about hospice and I will look into that as well. I also know that she is one of the stongest 32 year olds i have ever meet and will not go down with out a fight.
12/28/12 11:23am
Brandon, the Cleveland Clinic is an excellent facility, and I'm sure she's getting top-notch care. Please know that Phyllis and I are in your corner, sending positive energy. PJH
12/28/12 7:07pm
As PJ says the Cleveland Clinic has an excellent reputaion. I hope the next set of scans show good results from the gamma knife and that your upcoming trip is a source of relaxation and joy for you both. Thank you for connecting here. We want to hear how you both are doing.
3/ 2/13 9:09am
Well the mexico trip went very well and i am glad we did it when we did. Her whole body scan was yesterday and the found 4 new spots of cancer on her bones and maybe one more in her lungs. She goes in for an mri of her head on tuesday to see how the 9 tumors are doing and then to see the dr on wed to talk about treatment on for her bones. I will let you all know what happens after the Dr visit.
3/ 2/13 12:32pm
Bradon, so very glad to hear your trip went well - that must have been a very important experience for all of you, and I'm glad your mom came through it OK. Best of luck as you all continue to navigate this difficult journey - PJH
3/ 3/13 4:31pm
I hope the doctor has some good options for her when she talks to him on Wednesday. Each day brings new treatments, some of which may work for her. It's good that you were able to have that special time together in Mexico.
3/14/13 9:25am
Here is what happened on wed. They told her that she has a lot of spots that the cancer has moved on her bones (to many to count on her spine, both hips, both shoulders, her right ribs, both knees, both ankles, and shoulder blades), a spot on her liver, and a couple of spots in her lungs. She started Chemo again Friday and was told that she would be on chemo till things change. On one week off 2 weeks. With all of that she has 4 new spots in her brain and will be doing gamma knife surgery on Monday for those. The 9 old one have gotten a little smaller but all oare still there. She is still high spirts and the will to fight so we will see what happens with all the new treatment but she is in a lot of pain.
3/14/13 10:54am
It's good news that the spots are getting smaller. Knowing that a treatment is doing some good helps one cope with unpleasant side effects. The gamma knife should help even more. Be sure to level with the doctor about her pain levels, so that she gets as much help as possible to control that. Thanks for sharing your update.
3/14/13 11:06am
She has, they put her on slow released morphine pills for the pain.
3/14/13 3:49pm
Brandon, sending you all positive energy as you get through this together. The morphine should definitely help her pain. Take care - PJH
4/28/13 11:36pm
My mother is 57 years old and has recently been diagnosed with 'Metastatic lobular carcinoma of breast'. This has a very atypical presentation and up to 3 months back she had no symptoms what so ever. Let me try to explain the recent course of events.
somewhere in mid/end of Dec 2012 she started to loose her appetite and also her weight, initially she liked it as she was slightly overweight (84Kg, 5ft 3 in) but then we noticed that she was really not eating anything and that lead to acidity and vomits. we took her for a checkup and they found some Minimal ascites and few enlarged Lymph nodes largest measuring 2.0X1.2cm in the abdomen. On a closer examination they found few more Lymph nodes on her under arms. An Biopsy conformed the "Metastatic adenocarcinoma" and later IHC also confirmed it as consistent from Primary from breast. An PET scan was done in the mean time to identify the origin and extent of this spread and it only showed spread to lymph nodes all over the body and no other organs were effected except a 2 X 1.5cm Spiculated soft tissue.
This I was told was a very atypical presentation for a Breast carcinoma and we were advised to do an second Biopsy to rule out Lymphoma which is what they suspected could be the reason for the enlarged lymph nodes all over the body and Biopsy of "right inguinal lymph node" though showed up as a "Non-Hodgkin lymphoma - high grade, features are suggestive of Diffuse large B cell lymphoma." in HISTOPATHOLOGY, but the IHC confirmed our worst nightmare "Metastatic lobular carcinoma of breast". its ER 90% and PR 30%
I have been trying to go through the internet to understand more about this, but there is nothing that talks of a spread like this or may be I don't understand the medical jargon. In the mean time our doc started her on FAC palliative chemo yesterday (6 cycles with 3 wks interval) to relieve of her weakness and symptoms and advised to continue on Femar 2.5mg after that. But he was not able to give us any information on how the prognosis are as its very unusual presentation.
I was wondering if someone on this forum has come across such a case and could help us better understand of the treatment plan and may be about the general prognosis we can expect.
4/29/13 5:25am
Kiran, this is indeed a very atypical presentation; I hope one of our readers can help you with some information.
If you're in the U.S., please check this list of Comprehensive Cancer Centers. These are hospitals government-designated as "best in class" and, as such, they've seen more cancer cases than other hospitals, and thus have more expereince with treatment. Your mother will get the very best treatment possible of it's directed by an oncologist at one of these hospitals; she would also probably be able to get information about a particular hospital or oncologist familiar with this diagnosis.
I'm very sorry you're all having to go through this; I wish her the very best of luck with treatment, and you as you help her through it. PJH
4/29/13 6:07am
Kiran, sometimes the first signs of breast cancer do show up in the lymph nodes. One way this can happen is if the breast lump is too deep in the breast to be felt or show up on mammography. The doctors can tell it is breast cancer by examining the cells, which would look different from lymphoma cells. Anytime breast cancer has spread beyond the breast, the first treatment is chemotherapy, and FAC chemo would be one good choice. Femara or other hormonal drugs are standard treatment for cancer that is ER positive like your mother's. Because prognosis statistics are based on looking at how long people with similar cancers survived, it will be difficult to find statistics for your mother. I would think, however, that her chances would be similar to other ER positive Stage IV breast cancer patients. That is good news because ER positive breast cancer is highly treatable, and even Stage IV patients sometimes live for years. I hope her treatments work well for her.
4/29/13 6:32am
PJH - Thanks. Unfortunately we don't live in U.S. currently, however I'll see if I can get access to someone in there who would have seen such a case earlier through my friends there. In the mean time I hope the chemo works. For some reason I see her face a bit bloted after her first cycle on saturday, but the doc asked her to wait and watch for couple of days. Just hoping she gets through this next 5 cycle without much hassle and may be the ILC is contained for many more years.
Phyllis Johnson- I understand PET scan is the best tool available to identify the spread of any cancer in the body, though it picks up some false possitive at times and that in her case showed the cells all over the lymphatic system and only a very small nodule on the primary site on the outer wall.
May be its my Engineering mind working over time: I wonder if a PET can can detect the cancer cells in the body, why can't that same detection technique be used to find and kill the cancer cells.
4/29/13 7:52am
Kiran, I hope you have some luck finding someone in the U.S. who might be able to offer you some insight - some of the better cancer centers include M.D. Anderson in Houston, TX; the Fred Hutchinson Cancer Center in Seattle, WA; Sloan-Kettering in New York City; and Dana-Farber in Boston, MA.
As for why the PET scan can't be used to both find and kill cancer - that's the key issue right there, the "killing" part. Doctors know how to kill cancer cells – it's just that they can't pinpoint them closely enough to do so without destroying a lot of healthy cells in the process. When cancer has spread, it's always a tightrope to walk, trying to kill the cancer cells without killing so many surrounding cells that you kill the patient, as well. I hope your mother responds well to the chemo; as Phyllis says, many women do. I was diagnosed with ILC nearly 12 years ago, and I'm doing very well. There's always hope. All my best to you and your mother – PJH
4/30/13 11:44am
I posted her case on 'Ask an Expert' on the following forum: http://www.hopkinsbreastcenter.org/services/ask_expert/viewquestions.asp?id=999816238
unfortunately looks like our time is very very limited 
4/30/13 12:36pm
Kiran, I'm so sorry about this. One thing I can say, though, is this: never give up hope. The human body can react in unexpected ways. I urge you to help your mother through whatever treatment the oncologist advises, and hope for the best. She may surprise you.
And if her remaining days aren't as numerous as you all hope, please, please make the most of each one. Be there for her; it's hard when you're not able to "do" anything, but simply being there, being with her, is important. I'm sending you lots of positive energy for this journey ahead. PJH
4/30/13 1:06pm
PJH- Thanks , I really appreciate that.
5/ 2/13 5:47am
Kiran, in the 15 years since I was diagnosed with an aggressive cancer that kills most people within two years, I have met, both in person and on the internet, many women whose doctors told them to get their affairs in order because they had only months to live. Their doctors were probably thinking about the median life span for a person with their type of cancer. But to get a median, you have to also have a bunch of people who do better than average. Unfortunately, some of these women did die not long after their diagnosis, but others are alive years later and laughing at their doctor's prediction. No one knows how long your mother will live. You are in for some difficult days ahead, but you and your mother will get through whatever comes. I am hoping for the best possible outcome for you both.
5/ 2/13 1:05pm
Phyllis Johnson- You have no idea how much your response has helped us.
One question though, since you were diagnosed what changes did you make to your lifestyle. Its hard to believe that its only the treatment that helped you somuch.
5/ 3/13 5:23am
Kiran, I wish I could report that life style changes have kept cancer at bay all these years. My habits were fairly healthy before cancer--no smoking, little alcohol, lots of fruits and vegetables. Since my treatment for inflammatory breast cancer, I have tried to avoid preservatives and artificial dyes in foods, but I haven't made any huge changes. Although I had cancer in 16 of my lymph nodes, it had not spread as extensively as your mother's has. My main point to you is that while studies can predict how long an average patient will live, no one can predict how long an individual will live. Why one person responds well to treatment while others don't is still a mystery.
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More of a ? than a comment. My mother, 74, had her left breast removed July, 2009. The size - why she hid it I do NOT know! It became so obvious that I kept making comments, asking questions. She would snap, "It's just my bra!" She finally went to the Dr. when her bowels locked up. They said surgery right away. After surgery I saw the pictures. The growth inverted her nipple and looked like 1/3 head of cauliflower protruding from her breast. She has been taking bone treatments for 1.5 years now. There is a spot in her lungs, also. She is becoming very moody and bitter and speaks as if she wishes she could/would die. There have been things that have happened to depress her, I know, loss of her house or the inability to live there-condition and size of the yard. The bitterness really concerns me. Is this just a part to be expected? I have read several articles where life goes on for some, and not for others. Mom's age concerns me and the fact that they prescribed the bone treatment for two years. Is that how long they are allowed to give it, or is that the time frame they are expecting? I know, "Who knows?" I just don't know what to expect. Just give her all the love that she will let me give - not much it seems, sometimes, and hope, pray for the best. doviem@frontier.com