My (perhaps controversial) thoughts as a "newbie" to CA.

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  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    HI ALL--Am sorry again that I've not begun my messages back to you with your name attached!  I'll remember next time...trill

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi again LIndaKR--

    At the moment I'm borrowing a friend's computer and the room is a bit rowdy. Am looking forward to taking in all the new posts including yours when I get on my own computer again--hopefully soon.  In the meantime, thanks for this.

    Found out today--as a friend went over my path report and did some research--that mine is an invasive and aggressive type.

    So,of course, many tears. As they say: first, you cry...

    You all make me feel so much better and so not alone...

    trill

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Dear Suersis-- Good to hear another story...I appreciate it...makes me feel less alone...

    Well, I found out today I have an aggressive and invasive type. See my doc on Tuesday--hear he's very good and so is his nurse. I like that it's a dedicated breast cancer center.

    Have much to read on this site!  Wowie--am getting an education!

    Thanks!  trill

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited November 2015

    Hi Trill! Awwww, my cats were my best doctors during treatment! My short term goal is to outlive them, they are both 4 as well. Long term goal is to live forever lol. Cancer treatment is terrible, but really, it's 8 months out of your life, if you decide to go that route. Whatever you decide is the right decision! Pantaloon sounds darling, have you seen the Cats cats cats thread?

  • Tomboy
    Tomboy Member Posts: 3,945
    edited November 2015

    Okay, Trill. But in your original post, first you said he said there were no estrogen receptors, but further into your post, you state that he pretty much wanted to do everything, including hormone therapy. So I am wondering why if it is true, that you can't simply start with the lovely little pill. I mean, cut it out, too. And I have heard that some docs nowadays want to give hormone blockers to women who have even 1 or 2% estrogen receptors. Good luck

  • Tomboy
    Tomboy Member Posts: 3,945
    edited November 2015

    And finish that novel, but let us know where to find it when you are done. If you get done.

  • wrenn
    wrenn Member Posts: 2,707
    edited November 2015

    Trill, I have "an invasive and aggressive" cancer and "failed" chemo after one dose so I have had no other treatment and intend to stick around for a long time. I am 68 and feel that a heart attack or stroke will take me first. I feel guilty sometimes when i see friends enduring side effects from chemo when I got up after double mastectomy and just continued to get healthier. At no point after surgery did I need pain medication. Simple plain tylenol the day after and that was it.

    I am glad you found this forum to help you navigate this new information. Keep coming back once you get your internet up and running. Take care.

  • dtad
    dtad Member Posts: 2,323
    edited November 2015

    Trill1943 Hi there. Sorry you have to be here but welcome. I'm 62 and was diagnosed 6 months ago. I'm all about quality of life and do believe there are worse things than death. I had a BMX but no chemo and refused the anti hormones. I'm doing alternative methods to lower my estrogen. IMO even if you decide to refuse most treatments you should definitely have surgery to remove the existing cancer. Good luck and keep us posted ....

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Thanks, Tomboy---The novel will get done and will let you all know about it when that happens....

    I haven't yet had an appt with either breast surgeon or mo or anyone else beyond the mammo doc and biopsy doc and then this path report I have...so have not heard anything yet re treatment...just know I am triple neg....see breast doc tuesday and am gonna get a 2nd opinion at Hopkins...

    Still don't have my computer and sorely miss it--borrowing one and trying to read/write while a bingo game is underway in the background is pretty wild...

    bye for now...t

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited November 2015

    The great thing about TN is it often responds very well to chemo. Like, dead and gone, never see it again well.

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi there little blue flowers--Good to hear another cat person extoll their virtues, which are many. Got out novel notes and looked them over and am set to bang away at the book...will keep you posted... thanks for comments regarding tn....good to know...t

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015


    Hi wrenn-- You sound like one lucky camper--no pain meds!!?? Wowie...that's amazing.   Can't praise this site enough. You guys have lifted up this once sorry soul.  Am glad to be a part of it. t

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi dtad-- Yes, am definitely having this removed, just how much will go with it's the thing.

    I'm gonna connect with a doc at Hopkins for a 2nd opinion and see what a disinterested outsider has to say...although I may end up liking her so much I'll go with her!

    Thanks for your perspective on this very very loaded-with-info topic..

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi from Trill, or as I like to call myself the Ex-Let-Go-And-Let-God-Girl--

    Finally have my phone and internet...

    Am back from two appointments and thought I'd drop you helpful, interested, knowledgeable, unselfish folks a line or two or three about them.

    I liked the director of the Mercy Hospital Breast Center. He's a bright, neat guy, very passionate about what he's doing, and the Center itself is gorgeous.

    I learned I'm a Stage 1. Don't know more than that but will ask for more details down the road..there's so much to take in.

    People kept telling me I should get a 2nd opinion. Dr F at Mercy had laid out the choices I have to make surgically. He didn't go into the chemo aspect of treatment but then he's a surgeon and I know that someone else would handle that.

    Today I went to JHH (Johns Hopkins). I've never had a woman doctor and this one was so nice and spent an hour going over things with me. Then she turned me over for another hour to a Nurse Navigator who is herself a double mastectomy survivor and was full of great spirit and knowledge. She talked about things like the drainage bottle they attach to you after mast and that you keep track of, contents-wise. Thus lessening the bandaging necessary. One ick traded for another ick. Hah!

    I asked Dr Jacobs at JHH about this thing that Dr Friedman does--IORT--and that he'd told me about yesterday. I asked him about success of this method and he said he'd treated 100 pts this way and there was a 2 (or maybe he said 3--have to learn how to rewind this little recorder I borrowed to tape all the sessions!) recurrence. Dr Jacobs frowned at these results and said something along the line of not liking those numbers as they'd been doing this for 3 years. I didn't know what she meant by that. She said that JHH doesn't do IORT because it, in a sense, and in my words, hasn't yet earned its stripes. More studies need to be done.

    OK, so that's out.

    As of this minute I've decided to have a mastectomy of that breast and therefore--if nodes are OK--not have the radiation. Then chemo. That's how I feel at this point. And am happy to go with JHH....I loved the Nurse Navigator idea--and all the booklets, print-outs, even a lanyard to keep the drainage bottle in place... Any of you worked with this gadget and have any suggestions?

    Into the fray!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2015

    Glad you found good people to work with you. Stage I is VERY GOOD! Your cat should not have to worry about finding a new home EVER!!!!

    I had a lumpectomy so only had a drain for a couple days. I was home those days so can't remember doing anything special to keep it in place,

  • mvspaulding
    mvspaulding Member Posts: 446
    edited November 2015

    Not going to lie, I had 4 drains and I couldn't wait to get those suckers removed. They were just a nuisance and my surgeon didn't want me to shower with them. I didn't use a lanyard, I used safety pins and attached to my bra. I also found this great product called Pink Pockets online that you can attach inside your shirts and the drains fit right inside there. I'm glad that you are stage 1! That is great news

  • grammakathy
    grammakathy Member Posts: 407
    edited November 2015

    We will all keep our fingers crossed and prayers going for you during this process! It all sounds good and you are taking it step by step and making one decision at a time. The drains are doable and it is better to drain the fluids away than have them build up inside. I had drains after my first mastectomy for ten days. I hung them around my neck on a lanyard when I used a hand shower on my lower half until they were removed. The key thing is to limit your movements - especially your arms - while you have them. More movement means more drainage. And the goal is to get the drainage below the amount the doctor specifies so they can remove them. Keep up the good work and we are here for you!

  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2015

    Trill -

    Another Stage 1 Triple neg gal here, coming on board to wish you a kind and uneventful journey with your treatment. My nodule was 1.2 cm in my right breast, no nodes, no vascular. Have had mammos every year since 41 and never even a call back - until the mammo of 2009. I was 62 - with absolutely no history of any type of cancer in either side of my family, let alone any BC. Ended up having a large batwing lumpectomy and then back in to reopen it all to remove one dirty margin. Then went on to have 4 A/C, 1 round of Taxol (got instant neuropathy) and finished off with the 3 remaining doses of Taxotere. Six weeks of radiation - 28 sessions plus 5 boosts. I am still here alive and doing real well 7 years later. While it truly was a horrid year of treatment for me as I had every side-effect known to man and then some - I would do it all again in a heartbeat. Without it all, I'm pretty sure I would not still be here writing this to you. Know that you will be surrounded by loving, knowledgeable and caring women on this site while you travel your path and that you will never be alone. Couldn't have done without this site! Best to you - always.

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi LRM216, grammakathy, mvspaulding, and ruthbru (and of course any other interested readers)--

    Many thanks for your interest and words of support. They are, well, priceless.

    Just got back from a session with my therapist who was wondering why they are saying chemo (she's a very great believer in the Less is More dictum and thinks radiation and chemo are such a load for the body and could lead to other problems).

    I didn't tell you all and just learned more details about my tumor and found out I'm a Nottingham Grade 3--and a 9 in the 3 at that--plus a triple negative. That's why they steered me toward chemo in their talks at Hopkins. These are scary numbers and facts... I think the only things I have going for me are that I'm Stage 1 and I have great health care in this town and good friends, etc. And want to live. And then there's Miss Pantaloon.

    My therapist said that regarding IORT that the reason the doctor at Hopkins didn't like the numbers Dr Friedman gave me regarding its results is that they've only been doing this 3 years, which is not enough time to judge it. I listened to the recording of that session with him and he had one recurrence out of a hundred IORTs he's done.

    But she's not a Less is More regarding mastectomy. She got me thinking about the one-sided-ness of having just a left mastectomy. Her mom had a one-sided and it's somewhat skewed her posture and she's sorta twisted, but then her mother also had a stroke (she's in her early 80's) and thinks this might be the cause.

    In any case, I'm beginning to think a double mast while I'm having the other done makes sense. Fitting a bra for one side to match the other? Difficult. And the off-balanced-ness. And I'd also like these things--that once were just pimples on my chest but are now these low-hanging pendulous fruit that, when I take off my bra, swing and sway and are to me HUGE. I never had much sensitivity in them, and sex-wise they weren't part of the picture, at least for me, so I'd be happy to be 14 again, chest-wise.

    Does anyone know if Medicare helps toward chemo wigs and prosthetic bras?

    bye for now, trill

  • wrenn
    wrenn Member Posts: 2,707
    edited November 2015

    I don't think your therapist should have give that advise regarding chemo unless she is familiar with your type of tumour and the research regarding how effective certain chemos are for that type. Even then the decision has to be yours and I hope you don't feel 'influenced'.

    I am triple negative and had a double mastectomy for balance and my surgeon said she was glad I had made that decision since final pathology showed pre cancerous changes in the other breast.

    I was supposed to have chemo but developed diverticulitis from the first dose and the oncologist said that since taxotere had been know to perforate bowels it was too risky to continue. My daughter had read about side effects of the chemo and was relieved that I wasn't going to continue. Since I am 68 I am now happy to have skipped some of those quality of life demons. I did develop peripheral neuropathy from that one dose but that doesn't happen to everyone.

    I was told by my oncologist that there was a 30% chance my cancer would come back if I didn't do chemo and a 20% chance it would recur if I had chemo. I like the 100% vs. 0% take on it. Either it comes back or it doesn't.

    My government (Canada) does cover wigs and prosthetic bras and forms and I have forms but just go flat.

    I think once you have decided what to do you might feel better.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited November 2015

    They do offer chemo for triple negative even at stage I because it tends to be a more aggressive and since there is nothing else medically you can do after the initial treatments (if you were hormone positive you could take an anti-hormonal to continue to reduce your recurrence risk), you need to hit it hard right off the bat (the 'good' thing about triple negative is once you have made it to the 5 year mark, your recurrence risk will drop way off the chart)....so you want to what you can make sure you get to that point.

    Beesie is one of the resident experts on the Boards. Below I have copied her impartial and very thorough list of things to consider as you make your decisions about surgery.

    "Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.

    Before getting to that list, here is some research that compares long-term recurrence and survival results. I'm including this because sometimes women choose to have a MX because they believe that it's a more aggressive approach. If that's a big part of someone's rationale for having an MX or BMX, it's important to look at the research to see if it's really true. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:

    Lumpectomy May Have Better Survival Than Mastectomy

    Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

    Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

    Now, on to my list of the considerations:

    • Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
    • Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
    • Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
    • How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
    • Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
    • If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
    • How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
    • If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
    • If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
    • If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
    • Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
    • Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
    • Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
    • How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast?Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
    • How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?

    I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have. So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options. Good luck with your decision!"

  • flatnfab54
    flatnfab54 Member Posts: 44
    edited November 2015
    Medicare did not pay for my wig but do pay for prosthetics every two years and 6 bras per year.
  • LindaKR
    LindaKR Member Posts: 1,577
    edited November 2015

    Medicare pays for multiple bras per year and prosthetics every other year.  I had a unilateral mastectomy, I'm glad that I didn't have them both done at once, but I do think about having the other one removed every now and then.  I have a lot of adhesions and issues because my cancer was pretty locally advanced, and aggressively treated, my concern is that I could develop the same adhesion/pain issues on my non-cancer side, so that keeps me from having the other removed - that and the thought of surgery isn't very enticing. 

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited November 2015

    I have read that if your oncologist writes a prescription for a “cranial prosthesis," most insurance companies will cover it. Not sure if Medicare recognizes the difference as well. Never have the prescription say “wig."

    Two months post-lumpectomy, I've had some problems with seromas--one beneath the SNB incision that exploded (and is enlarging again even after the incision was sutured and a scar forming) and a massive one in the tumor cavity. The latter wasn't even noticeable pre-radiation, as it simply kept my breast the same size and shape as before. The lx incision was small and is already fading (never needed skin sutures). But the breast seroma began to swell appreciably after the first few radiation sessions, and now as I'm about to have my next-to-last treatment, is huge, cumbersome and sore. (But because fluid compresses more than fat, that breast still fits in my bras, albeit a cup size even larger). Considering I was a 38H or I before surgery, that's no small thing (pun intended). For a moment, I began to question not having had a mastectomy. But I realize that unless I had BMX, I would have had to have the left (healthy breast) reduced to match the largest mx forms and bras on the market--which are considerably smaller than I am. My bs' nurse warned me that breast reduction is quite painful and not without its own risks, namely long recovery, very visible scars, fat necrosis, calcifications, granulomas, infections, and--yes--seromas. In fact, I am such a seroma-former that I even had one from my core-needle biopsy. Mastectomy would have been a nightmare for me (especially being BRCA-negative), and even after drain removal I would likely have developed seromas anyway--whether or not I opted for reconstruction. No guarantee that even with bmx I wouldn't get chest wall recurrence or mets down the line--and especially with a low-Oncotype hormone+/HER2-cancer for which chemo doesn't work, targeted therapies are unavailable and AIs might eventually stop working, leaving no way to treat it other than long-term (hopefully) palliative treatment. Yes, my followups will be stressful (and if that seroma's still there a year down the road, probably painful)--but if my survival chances with lx+rads are equal to mx alone, why subject myself to a much more arduous surgery and all the issues that go with it?

    And I'm a tad younger than you. At 68, the degree of pain and discomfort, as well as the length of recovery and likelihood of complications are not insignificant factors to consider. Your doctor may decide not to do chemo--some, as with radiation, find the risk-benefit ratio too iffy after age 70 especially if you have comorbidities. (And practically speaking, you may be no stronger now than you will two years down the line). But there's one indignity you won't suffer, being triple-neg: the rough side effects of AIs or tamoxifen (some--like osteoporosis with AIs and blood clots with tamox--serious, not just unpleasant). You may feel at your age you don't need your breasts any more. That's fine. But can you handle the longer and more difficult recovery with the possibility of complications---reconstructions or not?

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi ChiSandy---

    Thanks for your input and the tale of your recovery ups and downs after lumpectomy.

    I've thought about the side-effects of lumpectomy and with it radiation and contrast that with the fact that bigger surgery is gonna be ickier and I'll be sore-er. And now here you are relating what you've gone through after lumpectomy--so it can be a rough road even with the lesser amount of cutting...

    I keep going back to just plain old wanting the thing off--and now the other one. I've healed well in the past after major surgery (hysterectomy) and my overall health is pretty good. And I really keep thinking that I'd be happy to have the bc breast gone and today began leaning toward just evening things up (sounds like I'm cutting someone's bangs, huh?) and doing both. The more I thought about it, the less I liked the idea of having to get the fake left to look like the real right (sorta like back when I was a flattie at U of Md and stuffed Kleenex in my bra: the endless adjusting and fooling with it in front of the mirror that made me sweat so much my French twist began to sink, the fear that the wad would shift out of my bra while I was trying to be a sophisticate sipping on her glass of wine...God, the hell we went through over stuff like that.)

    Don't, and probably won't, have word re chemo until path, node info from surgery is in....I'm inclined from how Hopkins doctor discussed chemo at some length--at least what she could spell out--as did the Nurse Navigator, that they'd want to do that. And I'd go for it, though, of course, not happily. But happy to get the ca deep-sixed in the ocean and not in me.

    Your seromas--I take it those are swellings filled with serous or serosanguinous fluid? Or something like that?--sound painful and I hope they subside asap. Be gone, seroma (Spellcheck, stop turning seroma into serum!)!

    Thanks again!

    T

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi ruthbru--

    Thanks so much for all you sent--lots of information to digest. I thought the question and answer portion really great.

    I read two of the four journal papers and found them fascinating. It's good to know that all those gals who have had and will have the more conserving of the procedures will have roughly the same results as the mastectomy patients.

    I'm pretty well set on a double mastectomy. I'm not too fearful about radiation--the one article talks about how their study shows that random beams that struck the non-cancerous breast and had no ill effects led them to deduce that the process was not having carcinogenic effects was interesting (hope I read that right), but I'd rather cut the treatment time down to surgery and chemo--even though I know that recovery from surgery itself will go on for a while and will be at first fairly intense. Plus an altered body to get to know...l

    So the call goes in tomorrow. I know the shakes will start as soon as I hang up--the reality of it, its assuming a 3-dimensional shape vs the two here on the screen, and on paper. But am ready.

    So appreciate your input!

    Trish

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi wrenn--

    You are right: now that i've made my decision I feel lots better. And you ALL were right when last week you said that when I had a plan in front of me and more information I'd feel better. And discovering this group made me feel like Alice tumbling head-over-heels down the rabbit hole and being caught by many down-reaching hands and pulled up out of that fall...

    I'm sorry to read that you had a bad turn with chemo but thank you for your relaying that as it does give me more info about the details of the chemo process and what can occur. Did you have diarrhea and cramping? More than that? It sounds like the stuff is so powerful and I do pause at what it might do to the rest of my body--I'm 72 and in pretty good shape but nonetheless... Maybe the things it puts you through and the fact that food will taste horrific will make me lose some weight!

    Everybody is different and different ages and different cancers and therefore given different chemo but a close friend had a double mast at 42 over a decade ago (doing fine) and had chemo and said that she was given a steroid ahead of time and this made her feel great the first day (not sure if she meant day of chemo or day after). The next day she felt like the flu had hit and she stayed in bed. But day three she was up and getting back to normal. Others say essentially the same--Ok, flu, back to normal...But reading yours I realize it might go a bit dicier.

    Lots to absorb.

    Thanks, wrenn!

    trill

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi flatnfab54--

    Appreciate your post about the topic I don't want to think about: losing my hair! Wow, that is a hard one. At 72 my hair is thinning and I do miss the thick bangs that I took for granted. Now you can see my scalp flashing through the sparser strands... But, I tell myself, this will give me a chance to get those bangs back. I found a wig site called Vogue wigs and they have bazillion wigs and among them is a bob I like.

    Thanks again,

    trill

  • Trill1943
    Trill1943 Member Posts: 1,677
    edited November 2015

    Hi again LindaKR--

    Yes, I've heard of adhesions forming. Is that why they say that you should do certain exercises after surgery?

    When I had an ovarian cyst removed back in 1968 ( a simple surgery and no complications but I was in the hospital for a week--today it would be In and Out in a day, right?) I recall the nurse telling me to be careful--that adhesions would form from the liquid stuff in the abdomen floating around following surgery and if I bent over it would get all up into my abdomen and stick together and form adhesions (or I may have hallucinated that on the pain meds).

    Is there anything you can do to relieve this? Would deep massage help?

    By the way: I love your photo. Every time I see your happy smiling face I want to jump into the photo and join you there on what looks like a nice warm summer day...

    bye!

    trill

  • jbdayton
    jbdayton Member Posts: 700
    edited November 2015

    As far as wigs. Check with your local American Cancer Society for a free wig and other free programs they offer for cancer patients. The Making Strides for Breast Cancer walks raise money for just these programs.


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