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Medical Forum / Diseases and Disorders / Breast Cancer / October 2005Bad news today, advice needed
Forgive me plunging in without lurking, but I need some advice. Today I was told that I had breast cancer. I was completely stunned, because I was sure it would turn out to be a benign growth such as I had 10 years ago, and hadn't really allowed myself to consider what I would do if it proved to be cancer. I simply couldn't believe that after all the horror of the core biopsy when I bled for 30 minutes, I would have to have surgery after all, because I was convinced that it was benign. I am going to have an operation on Thursday and by Wednesday afternoon I need to decide whether to have a lumpectomy or a full mastectomy. The surgeon said that ordinarily he would suggest a lumpectomy but it appears that the nipple may also be compromised, they won't know for sure until they've removed the lump. The additional problems are that I have an atrial fibrillation, so he's reluctant to expose me to surgery and anaesthetic on more occasions than necessary and I also have Type 2 diabetes which makes me more susceptible to post-op bacterial infection. These sort of infections are causing a lot of problems in hospitals in the UK at the moment, so this is a serious consideration when I might have to have a second operation. I just can't make up my mind what to do. My husband says lumpectomy, so does my best friend who is also a midwife and ex-theatre-sister, my sister says have it all off, my grown-up son who lives at home can't decide what he thinks but is very upset about the whole thing. I asked the surgeon what his advice would be to his wife and he said if she had the same problems as me he would advise the full mastectomy. The breast care nurse said that she didn't know what she would want but pointed out that once the breast is gone it can't be put back. At present I'm veering towards lumpectomy, but still with a big fear at the back of my mind that I might have to go through it all again. My main reason is that I can't bear the thought of a prosthesis. The one I saw today was horrible and it felt awful to the touch. It was heavy, although the nurse said it was actually one of the lighter ones. I thought I'd probably prefer to put a pair of socks in my bra. I found the whole thing horribly creepy. I'm a large woman, so going bra-less isn't an option unless they remove both of them. When I told my husband that if I couldn't decide by Wednesday I'd toss a coin, he was horrified. I have to say that I'm quite horrified by the thought of a month's worth of radiation therapy as well. I'd really like to hear the opinions of other women who've already been through this, and how they came to a decision. Geraldine > The surgeon said that ordinarily he would suggest a lumpectomy but it > appears that the nipple may also be compromised, they won't know for [quoted text clipped - 7 lines] > > I just can't make up my mind what to do. ----------- The only question you should be asking yourself right now, in my opinion, is which choice will offer you the greatest probability of survival. Everything else is secondary. I personally had a mastectomy, and I had radiation afterwards. I'm not gonna lie to you; it was extremely unpleasant. But I endured it because I know it gives me a better chance of staying alive. And I want very badly to stay alive. Best wishes, Eva > Forgive me plunging in without lurking, but I need some advice. > [quoted text clipped - 49 lines] > > Geraldine Speaking from the point of view of a man who's wife had a mastectomy and wore a prosthesis, I tend to agree with your surgeon. The nurse may say it can't be put back, but half of it can't be put back either, so for major surgery, that it rather irrelevant. Lumpectomy is generally more complicated surgery than mastectomy, healing can be more difficult, radiotherapy is mandatory, and while the overall outcomes are similar, lumpectomy has a higher rate of local recurrence requiring further surgery. The prostheses do seem a bit shocking at first but you quickly get used to them, and they are remarkably undetectable in normal situations. I think is also rather easier and more satisfactory to make a prosthesis for a whole breast than for part of a breast, if lumpectomy involves removing a lot of tissue. There is of course the possibility of reconstruction, although if you want to minimise surgery that is not the way to go. Personally I think it is overrated anyway, but to be fair, I don't actually physically know anyone who had it. My wife had one breast, my mum has one breast, etc. There is a lot of psychological "getting used" to the change in your body to be done for both you and your husband, it is quite hard work and and this will apply whether it is disfigurement or total removal of your breast. So put that aside for now and concentrate on the clinical aspects. Don't let cosmetic issues or denial get in the way of making a good recovery. Tim Jackson > There is of course the possibility of reconstruction, although if you > want to minimise surgery that is not the way to go. Personally I think > it is overrated anyway, but to be fair, I don't actually physically know > anyone who had it. My wife had one breast, my mum has one breast, etc. -------------- We should point out, though, that if you are going to have radiation, you cannot have immediate reconstruction. I had hoped to have reconstruction, but it's now been 9 months since I had the mastectomy, 5 months since I finished radiation, and the plastic surgeon says my skin has *still* not recovered enough to proceed with reconstruction. We're looking at another 6-month wait, probably. But the women I've met in support group who've had reconstruction are very happy with it. Eva Hello Geraldine, I'm so sorry you are having to deal with BC. It's an awful shocker to get that kind of news. And then one has to make important decisions about treatment..... I agree with Eva about there being only one basic consideration.....What will give you the best chance of long term survival? Were you given any statistics? This is such a personal decision that I'm certainly reluctant to suggest a specific course. Back when I was diagnosed (almost 22 years ago), in our area, mastectomy was still being done more frequently than lumpectomy with radiation. I also had a fairly large tumor, so I went with my surgeon's recommendation and had a modified radical mastectomy. I followed this with a year's worth of chemotherapy and then reconstruction with a tissue expander. I felt like I had done everything I could possibly have done to beat the cancer and knew that I didn't want to look back in regret. Guess that's saying that whatever path you choose, you'll need to believe that you've done the right thing FOR YOU. It helped that my husband was fine with the mastectomy decision, but I've since come to believe that I'd have had to do what seemed right at a "gut level"--no matter what he thought. It wasn't easy, but certainly "doable", and I'm still here! :-) I wish you well, Geraldine and hope that you'll stay in touch with this group. There are lots of very wise and compassionate folk here. We'd like to know how you are doing. You will be in my thoughts.... Barb > Forgive me plunging in without lurking, but I need some advice. > [quoted text clipped - 49 lines] > > Geraldine Hi Geraldine, I had a lumpectomy in 2000, along with 35 radiation treatments. I have had no re-occurance in the breast, but have had in my bones. I think I wouldn't recommend a lumpectomy. I have a certain amount of discomfort in the breast . Quite a lot of tenderness when I sleep on that side. It seems to get in the way. When you have radiation to the breast, the breast gets hard (like when you were about 13 years old) The Rad. Onc. said some of his patients wanted rads on both sides so both would be firm. Of course He didn't do that. I had drains in the breast for about a week. I don't know if you have those with a mast. Of course they removed all the lymph nodes on that side as well so that probably accounts for some of the discomfort. If I had the choice again I would get the mastectomy. I think it would be more comfortable and easy to heal from..Depending on the type of cancer found, I think I would get both sides done at the same time..If that would extend my life... Just My Humble Opinion.... Pat from Apple Valley, CA I was as shocked as you when I was told that I had breast cancer in August of 2004. Because there was more than one tumor, I opted for a mastectomy as my best chance. I have never been sorry. I did invest in the heavy prosthesis but have since given it up for the "softie" inserted in a mastectomy bra. It works just fine and is comfortable. I did not find the surgery difficult although the drains that I came home with were a bother for a week. Although reconstruction was an option, I did not see a reason to undergo more surgery than was necessary for the "survival" aspect of the whole thing. I think that the nurse who commented about "putting it back" comes across as unprofessional. This newsgroup has helped me tremendously and I urge you to keep in touch - it makes a big difference! Greta > Forgive me plunging in without lurking, but I need some advice. > [quoted text clipped - 49 lines] > > Geraldine It is a very personal decision. The chances are about equal whether you do mastectomy or lumpectomy. With the lumpectomy, as Tim said, radiation and usually chemo is pretty much mandatory, but they are advising that with mastectomy now, too. It seems to give a little more edge. My wife, who was small-busted, opted for bilateral mastectomy because a cousin had BC at an early age and an aunt had it also. Her surgeon thought it was overkill, but she has been quite happy with her choice. She opted for no reconstruction, figuring she had enough surgery, thank you. She initially thought she would use prostheses, but decided no to. She has had a little trouble finding clothes that drape well, but that's an excuse for more shopping, which is her favorite sport anyhow. I can't spot the reference, but I think one of the earlier responders pointed out that lumpectomy leaves a very distorted breast that generally requires a prosthesis. My wife's cousin had a mastectomy and a later lumpectomy (part of the reason my wife went for both at once), and rather wishes she had opted for a mastectomy the second time around, also. I am sorry you find yourself here, but you are quite welcome. How awful for you, and I'm so sorry. My surgeon advised a lumpectomy, which he did. But the pathology came back with no clear margins. So I had to go back in a few weeks and have a mastectomy after all. I wish I had had the mastectomy in the first place because one operation would have been easier than two. I'm also a type 2 diabetic and get infections easily. My surgeon put me on a course of antibiotics 3 days before the surgery, and I took them for ten days. He also gave me an antibiotic injection immediately after surgery. Your life is the most important part of your decision. By the way, after my lumpectomy my breast was so small that I would have had to wear a prothesis anyway. You get used to wearing them, for the most part. Marni > Forgive me plunging in without lurking, but I need some advice. > [quoted text clipped - 49 lines] > > Geraldine I'm sorry you're having to deal with breast cancer, along with your other health problems... Yes, I agree it's a personal decision, but one that can only be made with a thorough understanding of the implications of surgical options/treatment, taking into consideration the stage, grade, tumor size, lymph node status and whether localized. Also, estrogen receptor status needs to be considered; e.g., ER and PR positive or negative, when it comes to appropriate followup drug treatment. One other comment, if I may. Only in certain circumstances are chances (survival/recurrence) about equal for a mastectomy and lumpectomy. Here again, they vary, based on each individual's own very unique immune system, dna structure...response to treatment, etc. Many factors have to be considered, such as tumor size, breast size, and, as above...grade, stage, lymph node status and whether localized. In my case, early stage, small tumor, large breast, negative lymph nodes, ER/PR positive helped in my making a decision to have a lumpectomy, followed by Tamoxifen for 5 years (in a clinical trial) That was 8 years ago. As it turns out, the trial concluded the standard of care following lumpectomy would continue to include radiation treatment, in cases such as mine. According to "statistics" of the 1,000 women in the study, I was on the "losing end" of the statistical result, but...in reality, ended up beating the odds, so far that is. I'm just noticing your original post was almost a month ago. I hope you were able to arrive at a decision that proves to work out in your favor. Wishing you well. I'm sorry you have to deal with this. I was diagnosed with bc in March of last year. I was shocked and didn't believe them on some level as I had none of the risks for bc. My surgeon recommended a mastectomy which I had with immediate reconstrucion, no radiation and no chemo. He said radiation was pointless with the breast gone and had a chart that showed chemo would only help my chances 4%. The way the reconstruction worked was the surgeon removed the breast and stepped back and then the plastic surgeon put in an expander before closing. Then I went back weekly to have saline gradually added to the expander. Then in Oct. it was replaced in day surgery with a saline filled implant. I'm glad I got it but am disappointed that it doesn't match very well. I didn't talk with my fiance about this as it was my choice. I just turned a young 70. Good luck. I'm also sorry that you are having to go through this. I recall very clearly when the doctor gave me my diagnosis - over the phone no less. This was nine years ago (my mother is a 19 year survivor, so I had a good role model to follow). I went completely numb for about a year. I think that everyone thought that I was being really brave, but I wasn't. I had checked out. My physician and I discussed this at length. We decided to go for a mastectomy. Not only did I feel that it gave me a better chance at long term survival but I also thought that if we left a bunch of breast tissue behind, I would constantly worry about the cancer returning. I think that the mastectomy has been great for my peace of mind. That said, my mother had a lumpectomy and radiation - but she was post menopausal, I was not. I wish you all the best with whatever you decide to do. You might want to snag a copy of Dr. Susan Love's Breast Book if you want to read up on the details of both options. She write for the layperson so it's easy for someone non-medical to understand. Please keep us posted and feel free to ask questions here if they should arise. Take care. ...lisa >I'm also sorry that you are having to go through this. I recall very >clearly when the doctor gave me my diagnosis - over the phone no less. >This was nine years ago (my mother is a 19 year survivor, so I had a >good role model to follow). I went completely numb for about a year. >I think that everyone thought that I was being really brave, but I >wasn't. I had checked out. Thank you all for your kind advice. I've been getting a lot of support, not least from my own doctor, and the people at www.breastcancercare.org.uk have been wonderful too. I posted on their site at 23.30 last night and someone telephoned me at 8.30 this morning and arrnaged for another couple of people to call me this afternoon and discuss the options in view of their own experience. Everyone has been very helpful and I now feel that I really know what I need to make a good decision and face what is ahead. Thanks to everyone. Geraldine, I just had a lumpectomy for a 1st stage cancer.I am 84 yrs.old so opted for no radiation but am taking Arimidex. I feel very lucky and thankful. I think if I were younger I would have had a mastectomy as I feel the more you get rid of the better. Good Luck.......Purry >Geraldine, I just had a lumpectomy for a 1st stage cancer.I am 84 >yrs.old so opted for no radiation but am taking Arimidex. I feel very >lucky and thankful. I think if I were younger I would have had a >mastectomy as I feel the more you get rid of the better. Good >Luck.......Purry Thanks for your input. I am veering more and more towards mastectomy. > >Geraldine, I just had a lumpectomy for a 1st stage cancer.I am 84 > >yrs.old so opted for no radiation but am taking Arimidex. I feel very > >lucky and thankful. I think if I were younger I would have had a > >mastectomy as I feel the more you get rid of the better. Good > >Luck.......Purry This doesnt really make sense, the younger one is the more reasons there are to keep your breast. > Thanks for your input. I am veering more and more towards mastectomy. To clear up a few misconceptions, as it seems the majority of posters here are in favour of mastectomy: 1) If you find a good surgeon (word of mouth, ask to see his results) there is no or just minor disfigurement of the breast after lumpectomy. 2) Mastectomy doesn't guarantee you wont need radiation (or chemo for that matter). 3) Obviously if there is massive involvement of the nipple it might have to go, but a good surgeon can solve the cosmetic aspect. Minor infiltration of the nipple can be dealt with by radiation, ask the rad. oncologist about an electron boost and/or brachytherapy. 4) Mastectomy and lumpectomy + adjuvant therapy offer about the same survival- and local control rates. 5) The lymph node situation is independent of the breast operation, however in practice mastectomies are associated with bigger tumors, which more often have positive nodes than small tumors. 6) Support newsgroups tend to attract mastectomy cases, as these women have to live with a considerable disfigurement and need more support because of this. 7) Consider something I see regularly: The business woman that has a lumpectomy, gets her radiation done while holding down her job or (more often) running her own business, and switches straight back to her normal routine when its over. She usually gets her radiation very early or very late so as not to have to take off work. She comes to follow-up for a few years and spends as little time as possible in the department. No need or time for support outside her circle of family and friends. Her colleagues and especially her employees seldom learn of her illness. 8) Partners may say: 'its your choice, do what needs to be done to increase your survival chances' but lets be honest, men generally prefer fondling a pair of breasts (even if one of them is a bit smaller/ darker / denser for a while) as opposed to running their fingers tenderly over your ribs. This is not an objective criterion, obviously. 9) In the event of a local recurrence after lumpectomy a mastectomy is still possible, reconstruction is however not possible or much more difficult. 10) Having a mastectomy does not spare one having to go to the yearly mammography. Obviously, having less breast tissue to be x-rayed means less worring about equivocal reports, fewer biopsies. I guess you've had your op already so I hope you based your decision on rational arguments and can can live comfortably with it.  Signaturemadiba My biopsy lump was removed completely---hope I don't have to go through it again. As long as he was going in........told him to remove the lump. Wiser, so that I won't have to go through it twice Bonnie Geraldine, PLEASE read everything on at least one of these sites. You don't have to be afraid. http://www.alternativecancer.us http://www.cancertutor.com http://www.wtv-zone.com/intelligent-health/intelligenthealthindex.html http://www.curezone.com > Geraldine, PLEASE read everything on at least one of these sites. You > don't have to be afraid. [quoted text clipped - 3 lines] > http://www.wtv-zone.com/intelligent-health/intelligenthealthindex.html > http://www.curezone.com Only a bit better than your post two years ago with cat or dog testimonials, when you said you wouldn't post again. Those websites were about as interesting as watching my hard drive defrag. The latter being more informative and reliable. . J |
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