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Medical Forum / Diseases and Disorders / Breast Cancer / June 2008making a decision
I had come to the conclusion that I wanted to proceed with the lumpectomy/sentinel node biopsy and then, when the final path report is back about spread and need for chemo, I can decide to leave the lumpectomy alone and get radiation, or get the mastectomy. I don't want a mastectomy for cosmetic reasons--which was the surgeon's initial recommendation. I called her office and left a message that my vote was for breast conserving surgery, but I'd follow the tumor board recommendations. She called and left a message with my husband that the MRI showed no additional disease, the same 1.8 single cm tumor and the estrogen receptor status is 3+, which makes me an excellent tamoxifen candidate. She now concurs with the lumpectomy. I guess she called and said to him: "It's all good news." Which makes me realize what a toll this takes on her as well. My internist had called--she had just got the message, and we discussed the options, and she told me that she strongly supported my decision. She has also had patients and colleagues who had issues with reconstruction, and wouldn't chose a surgery based on wanting a reconstruction. With the lumpectomy, they can always take away more, when all the information--node status, PR/Her are back. Also if the pathology is suspicious. But a mastectomy for cosmesis just didn't make sense to me. For prevention of further disease, yes, but for looks--no. Judy >I had come to the conclusion that I wanted to proceed with the > lumpectomy/sentinel node biopsy and then, when the final path report [quoted text clipped - 21 lines] > prevention of further disease, yes, but for looks--no. > Judy Sounds like you have a plan..... good luck sounds like smooth sailing for you. >I had come to the conclusion that I wanted to proceed with the > lumpectomy/sentinel node biopsy and then, when the final path report [quoted text clipped - 21 lines] > prevention of further disease, yes, but for looks--no. > Judy I sent an e-mail with an address for BCANS--it might have died in yourspam filters. Nancy R did a survey of undocumented effects of tamoxifen you might want to be aware of as you start. Some get along nicely with it, but some don't. >I had come to the conclusion that I wanted to proceed with the > lumpectomy/sentinel node biopsy and then, when the final path report > is back about spread and need for chemo, I can decide to leave the > lumpectomy alone and get radiation, or get the mastectomy. I Hurrah! ... > She called and left a message with my husband that the MRI showed no > additional disease, the same 1.8 single cm tumor and the estrogen > receptor status is 3+, which makes me an excellent tamoxifen > candidate. She now concurs with the lumpectomy. Great news. Don't be put off by hard stories of tamoxifen, they're in the minority. ... > My internist had called--she had just got the message, and we > discussed the options, and she told me that she strongly supported my [quoted text clipped - 7 lines] > prevention of further disease, yes, but for looks--no. > Judy It's very hard for us, as mere survivors and not experts - even our beloved Tim doesn't know everything - to give unbiased opinions but I'm very glad that you've made a decision AND that you've decided what you have. I'm also very happy to read your measured words, it seems that you're much calmer now. It affects all of us when someone is very upset because it's so hard for us to find the words to use. We all have different experiences. I'm going to be away for the weekend but I hope to come back and find that things are still going well for you. In the meantime, continue planning for the wedding :-) Hugs, Mary > >I had come to the conclusion that I wanted to proceed with the > > lumpectomy/sentinel node biopsy and then, when the final path report [quoted text clipped - 43 lines] > > Mary Judy, It's great that you've been able to weigh this staggering amount of information and put it all together so fast. Considering I got my diagnosis a few days before you, you're way ahead of me. You mentioned having a breast MRI; does anyone know if they're the usual thing? I was told by the biopsy clinic that since my tumors are almost invisible on a mammogram, I should have an MRI to see what else is in both breasts. But yesterday, my physicians assistant said a breast MRI is not protocol and the program I'm on won't pay for one. I'm sure if I do get one, it will mean another two or three week delay. At the rate things are going, it'll be July by the time I have surgery. Glad you're getting some sleep, Judy. It must be a relief to know what's going to happen and when. Les > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 67 lines] > > Les Les, I read one article that said it should be protocol, but honestly it was the first time I'd heard of it, and I have far too many patients with breast cancer and I've never seen it done before. But I guess it's being used more and more. Ideally they like to do it when you're beyond mid-cycle if you have menses. They did it with contrast. Unfortunately, I'm not sleeping that well, but I think it's nature's way of sedating me.... Les, I pushed this through really fast, and I have excellent health insurance, and people cut me a break because they work with me--I talked to a psychologist today who works at the Breast Health Center, ironically someone I've known for 20 years and he happens to work there, and he tells me that some women ask to slow things down, while others need a more rapid pace--psychologically. And for me, there was the pressure of wanting to be at my daughter's wedding, while personally desiring some action be done to address the diagnosis. I just heard from the surgeon, and while she's still not happy about cosmesis, she's agreed to the lumpectomy tomorrow. My daughter is struggling to be happy about her wedding right now, and I've tried to tell her that a celebration of love and hope is a good thing at this time. Judy Judy > > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 94 lines] > > - Show quoted text - Judy, This is going to be quite an emotional time for both you and your daughter. It's all very dramatic; you should feel like a couple of war horses by the time it's done. Like you say, the wedding should be therapeutic after what you're going through, as long as other people take care of the arrangements. The slow pace of my treatment is not my idea. I really wish I could get things done as fast as you are. The fact that my tumors were shredded and beaten to a pulp during the biopsies makes me very apprehensive about cells spreading. A lot can happen in the months between my biopsies and the surgery. I'm hoping I can do without a breast MRI, simply because I know it'll slow things down even more. I'm basically a poor hillbilly living in a rural backwater, on the bottom rung of the medical hierarchy, so I can't expect much. I can't sleep either. The main reason I took estradiol for two years was because it stopped the night sweats and helped me sleep. It was a real blow having to stop that stuff cold turkey two weeks ago. I've noticed how much easier it is to have a good attitude after a good night's sleep. Did you take hormones before your diagnosis? Hope it's all going well for you. Les > > > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 121 lines] > > Les Les, Had the surgery--lumpectomy with sentinel node biopsy on Friday, under local with IV sedation. I feel much better than I had expected. The surgeon, as she helped me onto the table, told me I made the right choice. But, I'm allergic to ceftin, and I heard her give the order to give me IV ancef--a cephalosporin--and I had to tell them, to change it to cleocin.... I was a bit awake despite the sedation. and the last thing she said was that she wasn't happy with the looks, and I opened my eyes, and said "But I don't care about looks." In recovery, she told me that she's my neighbor, gave her cell number and said she'd come to the house this weekend if there was a problem. This being a small state, the recovery room nurse is my patient, and the woman in the next bed told me that my husband is her dentist. So much for privacy. My receptor status is very good: ER+3/ PR+3/ HER-. if there's no spread and the oncogene number is low, the next step would be radiation (and the radiation oncologist told me there's a protocol for partial breast irradiation that sounds promising) and tamoxifen. Yesterday I was sleepy and sore, and fell asleep in the middle of trying to watch "Spaceballs" with my husband and daughter. Today, it's my older daughter's college commencement--she actually graduated 6 months ago, but I encouraged her to do the ceremony, and I'm home and kind of pacing around. Did take a shower and see the cosmesis--so what? A bit upsetting, but my husband is a trouper and so supportive. No body is perfect. I just want to be here for my family and myself, and I know the surgeon did the absolute best she could. Through this initial process, some people amazed me--my internist has been wonderful--thoughtful and kind, family and friends have been great. work colleagues as well, and my gynecologist has been a real disappointment. Oh well. Les, do you qualify for Medical? I only know a bit about California, because my family lives in the bay area, and my younger sister is a Kaiser executive. My older sister is a starving artist, but pays for her own Kaiser. Judy > > > > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 162 lines] > her own Kaiser. > Judy Les, I forgot to answer you--never took any hormones, not even the pill. I'm 49 (50 next month, and still in the peri-menopause), I had my first daughter at 26, second at 29 and breast fed both. My family history is of some older great aunts getting breast cancer in their 70's. I once went to a lecture where they said the majority of women who get breast cancer don't have the classic risk factors. You do the best you can, but things happen. Judy > > > > > > "judy.n" <judy.nudel...@gmail.com> wrote in message > [quoted text clipped - 173 lines] > > - Show quoted text - Judy, Thanks for thinking of me, and congrats on getting your surgery so fast. It sounds like you're getting along great. I'm envious of course; every step has taken so long. A month's wait to get in for referral to a radiologist after feeling my lump, then a couple weeks to the biopsies, then more weeks for my first doctor appointment, then a cancer specialist the week after next. I hope they don't tell me I need a breast MRI, because of the weeks that will add. I've been assigned to a medical oncologist, so will call him about the possibility of pre-surgery chemo. As of Wednesday I'm on a federal program, the Breast & Cervical Cancer Treatment Program. It's a lot better than nothing, even if I'm on the lowest level of the medical hierarchy. Actually, the lowest level is for women whose households make over $22,000 a year and have no health insurance. I've lived my adult life in remote rural areas where health insurance is a rarity and there are no HMOs. Only full-time government jobs include insurance. My husband and I only worked part- time. At least it looks like I don't have an aggressive cancer, though I am worried about the fact that my tumors were shredded and beaten to a pulp. My bigger lump was quite round and visible before; now it's all flattened out. I'm 55 and maybe three years postmeno, though it's hard to know because of my hysterectomy for cervical cancer. I took a half-dose of estradiol for 2 years for my severe symptoms--which are back with a vengeance. I have few female relatives, none with breast cancer. They all had babies by age 17 so maybe that saved them. There's some smoking-related cancer in the family. My mom has leukemia. My major risk factors are having no children, being tall, and toxic exposures like the 814 nuclear tests, two oil refineries, and upwind incineration of the Army's chemical weapon stockpile. I have the same hormone profile as you, though I thought that would be a percentage so am confused what +3 means. I'm also Her-2 negative. Thanks again Judy, and have a swift recovery. Les > You do the best you can, but things happen. That's absolutely true. At the weekend I was talking to a fellow trder, a musical instrument maker whose wife died of eye cancer last year. Kath's last months were full of determination, energy and she made things happen, knowing that her condition was terminal. He said it had made a big change to his life because, apart from her company, she made many decisions he didn't know about. But her death had also made a difference to many of his friends and colleagues, they suddenly realised that things come out of the blue and that every day was worth living and treasuring in case there wasn't another. There's no point wasting our lives worrying about things which might not happen. And if it hadn't been cancer it could have been something else. I always talk about 'the bus', it's just a symbol for anything else. Stuff does happen and none of us is immortal. Hugs, Mary Les, Had the surgery--lumpectomy with sentinel node biopsy on Friday, under local with IV sedation. I feel much better than I had expected. The surgeon, as she helped me onto the table, told me I made the right choice. But, I'm allergic to ceftin, and I heard her give the order to give me IV ancef--a cephalosporin--and I had to tell them, to change it to cleocin.... I was a bit awake despite the sedation. and the last thing she said was that she wasn't happy with the looks, and I opened my eyes, and said "But I don't care about looks." In recovery, she told me that she's my neighbor, gave her cell number and said she'd come to the house this weekend if there was a problem. This being a small state, the recovery room nurse is my patient, and the woman in the next bed told me that my husband is her dentist. So much for privacy. My receptor status is very good: ER+3/ PR+3/ HER-. if there's no spread and the oncogene number is low, the next step would be radiation (and the radiation oncologist told me there's a protocol for partial breast irradiation that sounds promising) and tamoxifen. Yesterday I was sleepy and sore, and fell asleep in the middle of trying to watch "Spaceballs" with my husband and daughter. Today, it's my older daughter's college commencement--she actually graduated 6 months ago, but I encouraged her to do the ceremony, and I'm home and kind of pacing around. Did take a shower and see the cosmesis--so what? A bit upsetting, but my husband is a trouper and so supportive. No body is perfect. I just want to be here for my family and myself, and I know the surgeon did the absolute best she could. Through this initial process, some people amazed me--my internist has been wonderful--thoughtful and kind, family and friends have been great. work colleagues as well, and my gynecologist has been a real disappointment. Oh well. Les, do you qualify for Medical? I only know a bit about California, because my family lives in the bay area, and my younger sister is a Kaiser executive. My older sister is a starving artist, but pays for her own Kaiser. You see, Judy? I knew you would be supporting others on the group before long :-) Mary > Les, > Had the surgery--lumpectomy with sentinel node biopsy on Friday, [quoted text clipped - 40 lines] > > Mary Thanks Mary, And wouldn't you know--my gynecologist called and told me she'd been thinking about me all weekend and was concerned. People do the best they can. The only advice I have right now, is don't log onto oncology sites without full information and try to run your personal risk rates-- guaranteed to do nothing but freak you out and yield no useful information. Mary thanks for your support during the last wild week. It's not over yet, but I took the first step. Hugs back at you. Judy And wouldn't you know--my gynecologist called and told me she'd been thinking about me all weekend and was concerned. People do the best they can. The only advice I have right now, is don't log onto oncology sites without full information and try to run your personal risk rates-- guaranteed to do nothing but freak you out and yield no useful information. Mary thanks for your support during the last wild week. It's not over yet, but I took the first step. Hugs back at you. Judy Sounds like the worst is over. Next step radiation and then you are done ! > Sounds like the worst is over. Next step radiation and then you are done > ! alas, no, surgery isn't the last step (for any of us?). The meds come next. I am not liking mine. ... > The only advice I have right now, is don't log onto oncology sites without full information and try to run your personal risk rates-- guaranteed to do nothing but freak you out and yield no useful information. They've never freaked me out, I just treat them with disdain. Your advice on that is sound - but before we know anything about the (ANY) condition we simply can't judge what is sound and what is not. There's also a lot of unsound 'information' on newsgroups, sadly. We're unbelievable fortunate here to have Tim, who isn't a doctor but has the great skill of sorting wheat from chaff and dismissing purveyors of snake oil. He puts 'risk rates' into perspective and shows that they can be alarmist by not putting the true picture. But in any case, one individual has the 'risk' (or opportunity) of being one of many who prove the tables. > It's not over yet, but I took the first step. It's not over but I really believe that if you continue to treat the matter with more subjectivity you'll find it an interesting process - and come to understand the differences in approaches of both practitioners and their patients. It can be a positive experience - if you let it be. I think your daughter's wedding will be even happier for her because of your growing strength, you'll be a fine example to everyone in your life :-) Mary
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