Phyllis, I understand exactly what you are going through. Last year was spent with numerous scans for me also. I had bilateral mastectomy in Jan 2009, with the Inflammatory BC on right side and 4 out of 15 of the lymph nodes removed still positive for cancer after chemo. I had 33 radiation treatments after surgery. Last year I started having alot of rib pain so the oncologist ordered a bone scan. The scan lit up on my right ribs and sternum so he ordered CT scans of my thoracic and neck. The CT did not show cancer so he had me go to my neurologist. I have neurapathy from the Taxol and the idea was that I have nerve pain from damaged areas in my ribs from the radiation. The neurologist ordered MRI's of my lumbar and thoracic area to make sure there wasn't something else causing the nerve pain. They found 6 slipped discs, 3 in thoracic and 3 in lumbar. I then was sent to physical therapy for 6 weeks. Meantime I also had a strange lesion under my right arm, right along the scar line so I was sent to the breast surgeon. She had never seen anything like it and did a biopsy. The biopsy came back as burst blood vessels. Weird. The lesion is finally healing, after 6 months! The neurologist had me try Savella, which made me sleepy all of the time. Then switched to Lyrica, which makes me dizzy. Now I am back to Savella. Neurologist wants me on both. The thinking also is maybe I have fibromyalgia, since I have other pain as well. The slipped discs haven't gotten any better after PT, and I also have numbness in my legs if I sit too long, or lay on my back too long. So I am a mess but I am NED! I had been on 3 month follow ups and since my blood work comes back good I have been moved to 4 months. The oncologist says that with IBC after 3 years the chance of recurrance drops dramatically. He is very hopefull. I still have alot of pain with the neurapathy. It is a good thing I'm not working because I don't think I could have worked last year with all the tests and PT I had. I'm hoping that 2012 is much better! I am praying that all goes well with you!
I'm sorry you are having so many side effects and hope 2012 is indeed better for you. Your doctor is absolutely right that your chances of IBC recurrence go down dramatically after three years. In fact, most IBC recurrences happen in the first two years. Your chances of staying NED increase even more at five years.
Keep working with the physical therapists and other doctors to manage the side effects. Physical therapy is such a slow process that it is easy to get discouraged. You may see a big improvement as you get farther out from treatment. I felt much better after four or five years. Now recently I've hit some set backs, but for years 5 through 13, my side effects were been minimal and manageable. Thank goodness my employer has been very understanding about all of my medical and PT appointments lately. Thanks for sharing your experience.
This is so helpful to put my mind at ease. As soon as I finished chemo last year I felt like everyone in my life was like "You're done? Oh, good, so you're okay now?" & what I heard was "I don't need to hear about it anymore, right? We can all move on & pretend it never happened?"
Drives me crazy because I am still battling implant & surgery discomfort as well as extensive chemo side effects (PTSD, depression, nerve damage, arthritis, confusion & memory loss, etc etc etc). Everyone asks if I'm "cured." I'm free of cancer. I tell them that no one would tell me for sure & I pushed for scans after chemo because I was panicking. The only answer I got was "No Evidence of Disease". I'm 35 years old. I really hope that I make it at least 13 more years before I get so much as a scare. The pain I deal with now is bad & I was denied disability. I taught preschool & some fools seem to think that my dizziness, mood swings, random sleepiness/narcolepsy type symptoms, sciatica, neuropathy, depression... that these would be ok to have while caring for 20 small children. No one outside of those of us who've done this (including the damn doctors) understand what surgery, chemo, radiation, Tamoxifen, and all the other meds do to us long term. It sucks! Thank you for posting this. I will sharre with friends and at my hearing for disability! Hope your shoulder is feeling better.
This is so helpful to put my mind at ease. As soon as I finished chemo last year I felt like everyone in my life was like "You're done? Oh, good, so you're okay now?" & what I heard was "I don't need to hear about it anymore, right? We can all move on & pretend it never happened?"
Drives me crazy because I am still battling implant & surgery discomfort as well as extensive chemo side effects (PTSD, depression, nerve damage, arthritis, confusion & memory loss, etc etc etc). Everyone asks if I'm "cured." I'm free of cancer. I tell them that no one would tell me for sure & I pushed for scans after chemo because I was panicking. The only answer I got was "No Evidence of Disease". I'm 35 years old. I really hope that I make it at least 13 more years before I get so much as a scare. The pain I deal with now is bad & I was denied disability. I taught preschool & some fools seem to think that my dizziness, mood swings, random sleepiness/narcolepsy type symptoms, sciatica, neuropathy, depression... that these would be ok to have while caring for 20 small children. No one outside of those of us who've done this (including the damn doctors) understand what surgery, chemo, radiation, Tamoxifen, and all the other meds do to us long term. It sucks! Thank you for posting this. I will sharre with friends and at my hearing for disability! Hope your shoulder is feeling better.
No Evidence of Disease is as good as you are going to get. Even if your doctors order every scan possible, they can't tell you any more than that. Cancer cells have to grow to a detectible level before a scan can pick them up. Living in the first few years after cancer treatment is an exercise in faith Of course, you will have scared moments. When I made long-term plans at first, a voice in the back of my head was saying, "if I'm still alive." Anxiety is a part of being a cancer survivor. It's important to acknowledge the fear and then try to put it away so that your can enjoy life today. If it turns out your life will be shorter than you had hoped, you don't want to waste the time you have worrying. If you can't enjoy life because of worry, ask your doctor about medication to help with anxiety and depression.
You are so right about other people not understanding about the long-term side effects of cancer treatment. In that respect, we share a bond with soldiers returning from war. Everyone sees them looking healthy and wants them to be the same as before. However, they have been changed in ways they find hard to describe and talk about. To some extent, we are in the same boat. We look healthy and treatment is over, so why can't we move on? You are wise to recognize that some of your post-chemo side effects could have a negative effect on a class of small children. You will probably see some improvement in most of them as you recover from chemo. One rule of thumb that some doctors use is that it will take a month of recovery for every month of treatment. Other doctors just say to plan on at least a year to get your energy back.
I think you will eventually be able to go back to teaching if that is what you want to do. Working in a team situation with another teacher who can lift a crying child and do some of the other things you cannot do might be a workable accommodation. In the meantime, some more time on disability might allow you to go to all the follow up appointments necessary to get the best treatment for your side effects. I wish you the best as you recover.
Thanks for asking about the soulder. I'm in physical therapy with an occupational therapist who is also certified in lymphedema treatment, so I know that she understands post-mastectomy issues. I expect the therapy will really help, and after a while we will repeat the scans to make sure the worrisome spots aren't growing.
Thank you for sharing your experience - I'm a 3+ year survivor and while I don't share my fears with my family (what's the point), I feel exactly like you and many of the commenters here. It is always lurking around that there may be some cancers lurking or new ones (I'm BRAC1+). So thank you letting us know that those of us that just 'can't get beyond bc' are not alone.
Thank you for sharing your experience - I'm a 3+ year survivor and while I don't share my fears with my family (what's the point), I feel exactly like you and many of the commenters here. It is always lurking around that there may be some cancers lurking or new ones (I'm BRAC1+). So thank you letting us know that those of us that just 'can't get beyond bc' are not alone.
You certainly are not alone. The thought that the cancer might come back does lurk in the back of most survivors' minds. At three years, I hope the fear is receding. If you find it interfering with your daily life, talking to a counselor, joining a support group, or asking your doctor about an anti-anxiety medication would be a good idea. There are quite a few ways to manage the normal anxiety that survivors experience.
Phyllis, I meant to add with my last post above (and not sure how come my font is so tiny!) that I'm really glad you went the full testing route first, instead of just physio first, given your cancer background. I think we need to trust ourselves when something feels significantly out of the norm, and to rule the 'big C' out first. My family doctor pushed for this same approach when I was experiencing the arm pain and finally went to see her in addition to contacting my onocologist. I know of enough situations where it's been the reverse approach and it's been the wrong one. For example, when I was first alerted to my lump by an intermittent throbbing in my breast, I went to see a physician who was covering for my family doctor. She said (because of my being so young - 'only 40') that it was probably nothing but arranged for an ultrasound and mammogram. I almost cancelled that appointment thinking I was over-reacting. It turned out to be Stage II breast cancer and, after extensive research on my family medical history which I knew little about previously, it was of the BRCA2 hereditary breast cancer origin.
Thank you again for raising awareness about breast health and being NED.
I'm so pleased that there was a simple explanation for your pain. You did the right thing by calling this to your doctor's attention. The tendonitis would have only gotten worse without treatment, and the doctors need to know for sure what they are treating. Good for you on getting back into swimming.
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Phyllis,I am VERY glad you're NED - for now, and hopefully forever. Your words here voice what we all feel - fear. sometimes a lot; sometimes barely any. But always present, nibbling away at the edge of our consciousness. My oncologist echoed what you said; when I asked him when I could stop worrying about breast cancer, he said, "When you die of something else." Cold comfort, eh? Yet, in this dark December, I choose to enjoy the lights and joy of Christmas, rather than dwell on what the future may bring, health-wise. Here's to a healthy new year for all of us - PJH
Thank you to both of you for all your support and for voicing what everyone is feeling, while at the same time being positive and giving people hope while you continue your own battles. You are very special ladies :-). We have to be optimistic but that awful feeling that we are vulnerable doesnt go away. I just "celebrated" my first year of being diagnosed with TNBC. I know its not that long. This Year One anniversary was no one's "celebration" but my own personal, spiritual one - i am trying put this year past me and try to look forward. My family has definately "moved on" some of them did not even blink an eye that i was at the one year mark nor even ask me about my first follow-up since the surgery. (That really hurt but I was OK with that. I refuse to fall apart) I believed it is my personal battle at the end of the day that only folks like you can understand. With the suspicious lump i know i have on my back rib cage, i have not mentioned this to a single family member and if I do have to go through another set of treatments, I will do that fight. In the meantime I enjoy my kids who are here for winter break (home from college) and thank God I have them to live for and they have bright futures. I want to wish you both Happy Holidays and wish you too from the bottom of my heart a healthy new year (and YEARS of good news) to come. HC
Time heals, HC; it really does. Gradually, the cancer specter recedes... And yes, it happens much more quickly for those around us, understandably. They're not personally dealing with cancer like you are; it's not what they think of every morning when they wake up. Cancer draws a line in the sand - you have it, or you don't, and it colors your world view forever. That's why this is a good place to come and vent, share, ask for help or information... we've all been there, and we'll continue to be here for you. Take care- PJH