Q: How painful is a sentinel node biopsy (from someone who's had one? Why don't they numb it first, like with a needle core biopsy?
Misty, I had a sentinel node biopsy; it was done at the same time as my lumpectomy, the area was numbed, and there was no pain afterwards. Did they tell you they wouldn't anesthetize the tissue under your arm? That sounds pretty darned barbaric, doing a biopsy without some kind of painkiller. Have you asked your surgeon why nothing to numb the area? Perhaps you could ask whoever's in charge of the breast program at your hospital to put you in touch with others who've had the procedure with the same surgeon, at the same hospital; they could give you the best feedback, I'd assume... Best of luck to you - I hope it goes better than you expect at the moment. PJH
Maybe I've just blocked out the pain, Misty, but I totally remember getting the dye injection, waiting, then going into surgery. I know some women report it being very painful, but honestly, I can't remember it - and if it was THAT painful, you'd think I would. Must be the dy that stings... But I assume they'll be giving you valium or similar prior to surgery, so maybe you'll have that first, and if it's painful you just won't mind so much?
It's not at all unusual for the surgeon to be in charge at first. My surgeon handled everything up through the surgery and reconstruction (same time), then handed me off to the oncologist. That's the way it goes. Did you try emailing, as well as calling? some docs/nurses respond better to email than phone calls these days.
Once you get your oncologist (different than a hematologist, I assume), be sure you feel you can develop a good relationship with him/her, as you'll be seeing this person for years. Don't be afraid to ask for a different doctor if you don't like who you're seeing; it's worth the effort and self-advocacy. And... come vent her anytime! That's what we're here for, to support and guide AND listen. Best of luck to you - PJH
PJ, thanks for the encouragement on the pain. It would be nice if they'd give me something to relax me during the procedure, and while waiting for surgery. I'll ask my surgeon, if I ever get through to him.
My surgeon specifically stated my test results were sent to my hematologist, who's in the same dept. as the oncologist. I expected to be turned over to an oncologist, myself, but he didn't seem to know I was already this dr's patient because he asked me if I'd met him yet. Perhaps they'll change this after surgery, during the staging procedure. I'll check when I'm there Tues., because I really like my hematologist and we get along just fine. I've heard nothing but good about the two oncologists there, so I'd have no qualms about either of them taking over my case.
I'm sure I'll be asking more questions, and am so glad I found your site. Your quick response is most appreciated since everything is happening so fast. Thanks, PJ!
Misty, it's true - the initial cancer diagnosis is followed by a series of decisions and actions that happen FAST. Leaves your head spinning, doesn't it? And it's frustrating, because not only are you dealing with this shocking news, you're trying to make these critical decisions with basically no knowledge, and no time. Glad we can help you through this!
I think an oncologist will be directing your care, rather than the hematologist. So it's good the two you can choose from both sound like viable choices. I look forward to hearing back from you - best of luck Tuesday. PJH
Hi PJ, thanks. I decided this morning to cancel the Mon. appt. with plastic surgeon because somebody dropped the ball and didn't get Medicare's Ok on the out-of-network plastic surgeon. My regular surgeon's out of town 'til Mon, and I've talked with his nurse at length this morning, and told her I'm willing to skip the reconstuction if a double mast. would be better for me. He can make his decision on Monday, and I'm not going to concern myself about it in the meantime.
I'm 65 and in a supportive (10 years) relationship, so I'm not concerned with appearance as much as I am in avoiding unnecessary surgeries and procedures. Any input you have on this would be appreciated. I'm not looking for medical advice, but the counsel of another woman who's as knowlegeable on the subject as you.
Thanks, PJ, and have a great weekend!
PS, how does this "heart" thing work when you see a helpful answer from someone? I've tried it a few times with no success, but I'm sure it worked for me once. I'm easily confused nowadays, which I'm sure you understand.
Misty, a double mastectomy is very aggressive. And it doesn't reduce your risk of dying of breast cancer - though it does reduce your risk of recurrence in the same breast (not eliminate, since some breast tissue always remains; but it reduces your risk by about 90%). So, in deciding on a double mastectomy, you'd want to balance the reduced risk of recurrence with the possible damage to arms/shoulders/chest muscles; and possible long-term (permanent) discomfort. The plus is, with a double, you can go without a prosthetic if you choose, and will feel "balanced" and steady on your feet. The negative is as I said: aggressive surgery with possible long-term side effects.
As for the heart thing - I think you "drag and drop" the pink/red heart shown on the left side of the page into the little area at upper right on the post. I'll try it on this post, see if it works.... And you have a great weekend too, Misty, if you can. This, too, shall pass. "Cancer is a rock in the path. Step over it; the path will still be there." PJH
Wow, PJ, I'm so glad you gave me a heads up on this before I tell my surgeon that's the way I want to go. I was looking for "balance" as well as to avoid the additional need for a plastic surgeon to insert the spacer for a saline implant, since my insurance company isn't going to Ok an out of network specialist, the ball is now in my surgeon's court. They're willing to expedite things despite their 14-day extension, if he'd just fax them the info they've been waiting for, explaining why I need this particular plastic surgeon. I realize now the need to be pushy with something serious like cancer when dealing with too many phone calls just to get the simplest thing moving along.
I phoned BlueCare Advantage and got the straight story from them on what's going on. I asked her where the nearest network doctor is, and it's a 1-1/2 hour drive from here. I don't know how much extra it would cost me even if they do Ok the one I want here. By the time all this gets worked out, it might be impossible to get scheduled soon enough to have surgery before Christmas. Bad time of the year for that sort of thing, and I understand there's a severe shortage of medical supplies in our area until after the first of the year. The hospitals are swapping anesthetics and other drugs, or having to substitute with something they'd prefer not to use.
Also, after your suggesting about getting email addresses for my various docs, I've concluded they're all pretty backwards in this area because not one of mine lists any email info under "contact us" on their websites.
I should be fine the rest of the weekend since you've helped me make a big decision. I don't like the risks involved with a single mastectomy, as well as the pains that come and go for years, or the double chance of nerve damage. I'll stick with one even if I can't get reconstruction. I'm a total chicken when it comes to surgery now. In the past I just did what the docs told me, and didn't ask a lot of questions. It's not going to be that way anymore.
Thanks again, PJ!
Misty
Can't really work the heart thing... I dragged it but it wouldn't drop. Then all of a sudden it dropped into your post, above mine. WHATEVER... "Technology is our friend." 
PJH
PJ, I see the two red hearts by the comments as you mentioned. What I don't see is any other red heart to "drag and drop." I guess that should be one of the least of my worries now. I'll let it go for right now. Thanks for explaining how it works. Now I've just got to find the red heart to click on. All the "hearts" I see are ones that haven't changed to red yet. If I could find one of those red ones, at least I know where it belongs. lol
Thanks, PJ!
Misty
Misty, look directly to your left - on my computer, I see a big red heart in the area to the left of these comments, where a left nav bar would be. And I notice the feature works MUCH better in Safari than it does in Firefox, so it may be a brownser issue... PJH
PJ, I think you're right about it being a computer-related thing with my server or something. Maybe even my own security settings. When you have the response window open on my screen, text is a wide column down the middle, and empty margins on both sides.
Thanks for the input. I'll worry about those pesky hearts some other time. It's past my bedtime now!
Misty
Many cancer specialists are oncologists/hematologists, which makes sense because many cancer like leukemia are cancers of the blood. Although it's likely that the doctor you will see after surgery is board-certified in both areas, don't hesitate to ask. These days you can usually find out this information easily by searching the doctor's name on the computer. Most doctors have a website these days that lists where they went to school and their areas of specialty and board certification.
Phyllis, I appreciate your input. I've been seeing hematologists for two years for thrombocytosis and anemia. He has all my records already, so if those conditions make a difference in my treatment he'll be in the best position to bring the onc up-to-speed. I suppose I might need both of them after my surgery, depending on the path report from that. They're a great team, and I have confidence in them all.
Stay well!
Misty
It's taken a long time, but I'm back here again. I had surgery Dec. 27, 2011. Had both a mastectomy and lymph node dissection & removal. So far, I'm doing pretty good, but I'm not a "happy camper."
My path report shows one of my tumors (at 6:00 position) disappeared somehow. All they found was scar tissue in that area, and it was connected to quite a bit of skin. I haven't had what I believe to be an acceptable answer from any of my doctors. Have you heard of anything like this happening?
Finally saw my hematologist at the cancer center this past week. He and his p.a. both practice as medical oncologists, so they'll be keeping me for a patient. I was shocked to learn that my path results have changed since my core biopsy, when both tumors were studied. Then I was ER+ PR-, with estrogen overexpression.
I've now been told (following my post-surgical path report) that I am now ER+ and PR+, with estrogen overexpression. I've been staged IIa. My mo said they're recommending I have ACT chemo with Herceptin, which is much worse than my surgeon told me prior to surgery. I let him insert a port during my surgery, but now have some very big doubts about it.
I read your comment about what you would do if your cancer recurred, and you said you'd probably make a different decision, and that 10 years after chemo you're still suffering side effects. I am thinking very seriously of declining ACT because I've read up and it sounds absolutely awful. At my age (65) I'm about to back out of treatment, and have my port removed. I told everyone that I would at least try the chemo, but that was before finding out it would be ACT.
I see my surgeon for a recheck Tuesday, then back to my mo at the cancer center for further consultation. I was told by the pa there that if I don't start chemo right away, I'll need to come in and have my port flushed. Even that sounds horrible to me. My surgeon said nobody is to use my port yet, and he'll let me know when it's going to be Ok to start.
I'm worried about not making it through 12 months of chemo, and so worried that I'll have long-lasting side effects, like you say you have. Any advice for me? Or is there a forum here that could answer my questions better? I'm being pressured and they make me feel like I'm running out of time.
Thanks for any guidance you can give me. I need to know as much as I can before making a treatment decision on something so serious.
Misty
Hi PJ. I had my surgery Dec. 27th, without the sentinel node biopsy. I discussed it with my surgeon just before Christmas and he said that he didn't think the sentinel node biopsy was really necessary since we already knew the node that was so swollen was cancerous, so he did a mastectomy with sentinel node dissection and removal.
Surgery was Ok and I'm recovering, and being pushed into starting chemo ASAP. They want to give me ACT plus Herceptin. After reading up on the ACT, all the side effects scare me quite a bit. I'm 65 and have serious doubts I'd survive chemo, let alone make it through the first 5 years. The chemo will take 12 months.
Any advice for a woman my age before I make the wrong decision? I wasn't told until after my surgery that ACT was even being considered. If I'd known, I would not have had my port placed during surgery, and had opted out but changed my mind. I'll probably need to have it flushed before my chemo even starts, and that sounds creepy enough to me. I'm having serious second thoughts on chemo, and trying to find out whatever I can first.
Thanks for all your help. So far, I've gotten the best information from this site, so I'm back here asking again, and surely appreciate all your help.
Misty, it's good to hear from you. Yes, I have heard of tumors disappearing by the time of surgery although I don't know how often that happens. Your experience with a change in ER or PR status is more common. What happens is that tumors are often mixed. The biopsy samples only a tiny bit of the tumor. After the mastectomy, the pathologist can test a larger sample.
I am almost 64, and I would not hesitate to have chemo based on my age. The Adriamycin in the ACT can be hard on the heart, but before the doctor would give it to you, he would do a special heart scan to make sure your heart is strong enough. If you have some underlying health issues, then you need to have your oncologist talk to the doctors who manage your other health problems to make sure that the chemo is safe.
I understand how distressing it can be to find out that your cancer is more serious than you thought before surgery. The same thing happened to me. Two previously undiscovered tumors were found on my chest wall and 16 of my lymph nodes tested positive for cancer. I was very upset and very depressed. It was at that point that I decided to seek a second opinion from a Comprehensive Cancer Center. I am so glad that I did that. The doctors there explained exactly what my prognosis was with each of my treatment options. Their treatment recommendation was the same as my local oncologist had already suggested, and I was able to proceed with much more confidence that I was doing the right thing.
Don't let your doctor push you into chemo or a particular chemo. There are several options, and some have fewer side effects even if they may be less effective. On the other hand, don't feel that you are too old for chemo. When I sat in the chemo room while I was in treatment, I was the youngest by at least 20 years on most days. Most of the patients were well into their 70's and older.
Talk to your doctor frankly about your fears and concerns. Get the facts about how this particular chemo helps women with your particular chemo profile and find out what the risks are for your age group. Consider a second opinion and once you make your decision, don't look back. I wish you the best as you go through the next stage of your recovery.
Phyllis, thanks so much for your quick response. You must have sensed how tense I've been over all this. It's like it's all rushing at me so quickly.
First, thanks for explaining, in terms I can understand, about the "missing" tumor, as well as the mixed ER and PR status and its possible causes. Now it makes more sense to me.
I did talk to my cardiologist about being healthy enough for Herceptin infusions, since that was the only treatment I had been told about. He had done some extensive testing on me earlier in 2011 because I had dizzy spells and was passing out. He based his decision on my earlier test results, but did not run any further tests. Do you think I should see him again and ask about the plans for ACT? If Adriamycin is harder on your heart than Herceptin, I'd certainly want his opinion on that, specifically.
Will my MO be requesting other testing to see if I'm healthy enough for chemo? Some days I feel as if one hand doesn't know what the other is doing, and they don't do everything they were supposed to. For instance, I was supposed to get a flu shot before going to the hospital. Nobody bothered to do so before I was checked out. Same thing happened at the hospital when I had my surgery last month. I was supposed to get a flu shot before going home, but it never happened.
I was in the chemo room here locally last year when I needed some iron infusions. I noticed elderly patients who were rolled in on gurneys, and I couldn't understand why someone in that condition would be undergoing chemo when they didn't seem aware of what was going on around them.
You've given me some questions to ask both my MO and surgeon this coming week. They're both more than willing to answer any questions, but reluctant to offer the information I need unless I ask. It's as if they're afraid I can't take a straight answer from them.
Thanks again, Phyllis. Take care and stay well!
Misty, Phyllis is right on in everything she says. All I can add is this link to a list of Comprehensive Cancer Centers. If you haven't accessed one yet, see if you can; these are the government-designated "best in class" hospitals nationwide. They see tons of cancer patients every year, and thus have the experience and facilities needed to give you the very best treatment - including good information on options. As Phyllis notes, ACT isn't the only chemo available; and, while Herceptin continues for a year, its side effects are basically non-existent. A normal treatment of chemo (like ACT) would last for 3 to 4 months - still significant, but not as daunting as a year! Best of luck to you - PJH
PJ, thanks for the link to the various cancer centers. I have a booklet I picked up earlier this week that I can refer to. I also have looked into some of them, but truthfully I want to stay here in town. In Michigan this time of year, I hate being out on the roads. I also don't want to have to go and stay in a strange place where I would be there by myself. I know this is a bit irrational, but I also suffer from other health issues and prefer staying here, where all my doctors are in the same building as the cancer center (except my surgeon).
I sure am glad I have the two of you to help me out when I'm scared, unsure, and most of all confused.
Take care, PJ!
I hear you, Misty. All I can say is, time heals. It really does. You'll get through this, and go on with your life. "Cancer is a rock in the path. Step over it - the path will still be there." And grab hold of all those hands reaching out to you as you take those challenging steps! PJH
Worrying about the logistics of going to a big, new hospital isn't at all irrational, especially when you already don't feel well. I wasn't suggesting that you go there for treatment. I was suggesting that you see them for a second opinion that your local doctor can use to come up with the best treatment plan for you. But it still would probably involve a whole day of driving and sitting in a hospital. You would probably want to see if you could find someone to drive you if you decide to go that route. However, if you can get a good dialogue going with your local doctors, so that you understand the risks and benefits of each treatment plan, staying where you are will work fine. Let us know what you decide. We want to help.
Thanks to both of you. I'm not giving up. I've been "burned" by my pcp's office staff for dropping the ball when I needed authorization to see an out-of-network plastic surgeon, as well as when I required the breast MRI. I hate to count on them for much of anything anymore because their delays have caused big issues and roadblocks for me.
The biggest was trying to get the Ok for a local plastic surgeon who's not part of the BCN's approved physician list. Even with my involvement, they dropped the ball. By the time I got BCN's Ok I had already informed my surgeon that I would go ahead without the reconstruction, and we were proceeding accordingly. He initially told me I couldn't wait until after the holidays to have surgery, so I wasn't willing to wait for weeks on end for the two surgeons to coordinate my case with their respective schedules. I have little confidence in my pcp's staff, and not a whole lot for the doctor, herself, after finding so many errors and missing information she has in my chart.
She had me down as having my ovaries removed during my hysterectomy. This is not true. She'd kept me on Premarin for years due to my hot flashes. All I needed was an adjustment in my thyroid meds and the hot flashes went away.
Question: Would all this extra estrogen I was taking have anything to do with my HER2/neu ER+ status? Or does this have nothing to do with it? I was on it for most of the last 30+ years. Just trying to find answers, not trying to make accusations at her. I stopped taking Premarin on my own about a year before my diagnosis. As far as I know, she doesn't even know that I've just had a mastectomy. Not sure what I should do, if anything. Any suggestions on how I should handle this? I'm not very confrontational, but would like to give her and her entire staff a good chewing out for their incompetence. They need to get it together before they continue expanding. Their practice is much too large now, in my opinion. It wasn't when I started treating with her.
I did check to see what other doctors in my insurance group are taking new patients. Unfortunately, none of them are doctors I'd even consider as I don't have a very high opinion of any of them, and there are only a few to choose from. I think my issues with the pcp are mainly responsible for the negative attitude I've had since my diagnosis.
Do either of you have any thoughts or advice for someone dealing with a situation such as this?
Thanks again,
Misty
Misty, when a study was done of hormone replacement therapy, doctors did find out that the women who were getting it had a higher rate of breast cancer, so the study was stopped. I would think that Premarin would not be a good drug for a woman with working ovaries, and today most doctors would hesitate to prescribe it for as long as you took it. It still has a use for women whose ovaries are removed long before their natural menopause date and for short-term relief of hot flashes. Whether taking Premarin caused your breast cancer would be impossible to say since so many women who have never taken hormone replacement therapy get breast cancer.
Nevertheless, your concerns about the competence of your doctor and her office staff are valid. Since you have already investigated the possibility of switching doctors and the options are not good, it sounds like your best recourse is a frank talk with your current doctor. Make a list of the issues that have bothered you the most. Put them in priority order. At the top of the list put the ones with the most serious consequences and the ones that she is most likely to be able to fix. Then ask for an appointment to discuss these issues with the doctor. To be fair to her, you might want to let her know that you have concerns about the management of your health care so that she has time to review your chart before you drop it all on her as a surprise. Because you don't like confrontation, you could even do all of this in a letter, and ask for a follow-up appointment to discuss ways to prevent the problems from occurring in the future. That will focus the face-to-face time on ways to make things better instead of on blame. Keep the tone of everything you say focused on the positive. "Doctor, I want to keep you as my primary care doctor, but I have been discouraged by these mistakes. I want to know how we can avoid them in the future."
If your insurance will allow it, another option might be to make one of your specialist doctors your main doctor. You could also show the list of doctors your insurance will cover to the specialist you trust most and ask which one he would recommend for you. Also check with nurses as they often are the best source of information about doctors. You don't want to leave your current doctor if there really is not a competent alternative, but it may be that one of the doctors on that list would actually turn out to suit you better than your current doctor.
Phyllis, those are excellent, sensible suggestions. I've printed your comments out for reference and am definitely going to take your advice.
My insurance does not allow you to have a specialist for your pcp. They are very specific on who is considered a specialist, and who is on their pcp list. My co-pay for the pcp is less than a specialist. I didn't realize until a couple of months ago when my special friend signed up for the same insurance I have. Suddenly he couldn't use the internist he'd been treating with for 10 years, so he switched to another Medicare supplement where he's not so restricted. I was too late to make the switch during open enrollment, and am concerned that with my pre-existing conditions I'd have trouble getting coverage.
I'm thinking of calling her office tomorrow and telling them I need an appointment to go over my treatment plan for chemo, as well as review my current scripts and bring her records up-to-date with documents she doesn't have at this time. If I can't bring myself to go into the issues with her staff at that time, I'll write the letter, as you suggested. It's not easy to get more than a short appointment, unless it's booked way ahead of time.
I may have to forego that and just write the letter, and ask for her first available appt. when I call tomorrow, giving her sufficient time to receive and read my letter before I come in.
You mentioned a nurse is a good source to check with when getting an opinion of what doctors to choose and which to avoid. That's funny because it was a nurse and a close friend of mine who both highly recommended her. She's in a large practice, and it wasn't this bad way back then. I was very pleased with her until the last few years. I really would like to work this out with her so I wouldn't feel any need to change.
Thanks so much, Phyllis!
Misty
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Thanks, PJ. All he told me was that it was really going to sting, but nothing about anesthestizing anything. This procedure is an hour or two before the surgery, when dye is injected in the area of the tumor to identify the sentinel node, He said it's so by the time he finishes my mastectomy he'll know exactly which nodes are affected and have to be removed. I think I'll be under anesthesia by the time he removes the sentinel node for biopsy. Are we talking about the same thing?
Could it be he does numb the area first, but that it stings real bad for a few seconds? He numbed me for my first (fine needle) biopsy and said that'd hurt a bit, too. It wasn't all that bad, so if that's what he's talking about I'll stop worrying so much. When the radiologist numbed me for my core biopsy, it didn't really hurt either. If I could just prepare myself by knowing what to expect, I'm pretty good at handling things as long as I know what to expect.
I haven't even seen my hematologist since I was diagnosed, and I was told he'll be in charge of my follow-up after the surgery. My next appt. is with his PA in December to follow up on my other condition. I called my surgeon's office with questions yesterday. He was not available, and I was told his nurse would call me shortly after 4:30. It's 24 hours later, and I still haven't heard anything from that office. I'm feeling like an orphan because, at this point, my surgeon seems to be the one in charge. He said to call if I had any questions, but I'm beginning to wonder what's going on.
I'm scheduled for blood work Tuesday at the cancer center. While I'm there I'll check at the front desk when I check in and see if someone there can give me assistance with who the "go to" person is in a case like mine. With Thanksgiving being next week also, I have my doubts about anyone's availability, but I'm certainly going to ask.
Thanks for letting me vent, as well as offering your advice and support!