Team ILC Warriors
Comments
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Fitzy, I am sorry to hear of your progression. My aunt had liver mets almost 2 years ago and they responded really well to 4 or 6 rounds of taxotere.
As a fellow 3b, may I ask if you were on femara for the usual 5 years or for all of the 9 years? Also, was your 'B' from chest wall or skin involvement?
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Smrlvr, I have also opted to stay flat rather than do recon. At first it wasn't really a choice. My doc told me to wait 2 years with recon. During those 2 years (early on actually), I realized I did not want recon. I would love new breasts, but since it is not possible to get new breasts, I will pass on going through a lot of surgery, pain and misery to end up with 2 lumps on my chest that do not work and do not look anything like what my breasts used to look like. It is also a surgery that seems to have an unacceptably high failure and/or complication rate (especially if you have had rads) and most people seem to need minimum 2 surgeries, sometimes many more.
I have seen a couple of beautiful recon jobs. Typically they are done in connection with prophylactic, skin-sparing BMX or very early stage cancer, not requiring rads. All the rest that I have seen do not look like anything I would invest pain and surgery to have on my chest. I am a quirky type and I know that anything other than about 97% perfect would make me way more upset than the honest scars I have now. But that is obviously a very personal thing.
Finally, and this may be what Fitzy is getting at, I am stage 3b. My chances of living to 100 are severely reduced by this DX. Maybe I will be lucky and get 9 years too before I have to deal with this mo-fo again, maybe I will get more, maybe less. I do not choose to spend any of those years in a hospital, in pain, with bandages, unable to play with my dogs and have a nice dinner with my dh. I do not like hospitals, and unfortunately I can be almost certain that there will be plenty of hospital time in my future at some point.
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really helpful comments sgreenarch - I would love to fast forward and see my attitude to recon in a few years - I was adamant I wasn't interested at the start and 6mo on I still very sure I do not want more surgery Although I am not sure enough yet to deal with my dog ear - that would feel like the point of no return and I seem to pull back from that step
Momine -apologies for not commenting sooner ...... you mentioned awhile back that I should ask onc about AI instead of T for me as more effective in ILC ... I think since I was premenopausal before chemo that it is too early for me to go straight onto AI. Wouldn't be strong enough for the amount of oestrogen my body is still making. Probably in 3 or 5 years time she will move me across to an AI
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Momine, thanks for your insight. more and more I am thinking like you. I am still going through chemo, then I have rads. So this will have taken a year from my life and I can't imagine another year with surgeries taken from me for a fake set of boobs. I am a teacher, so it would have to be done in the summer. Summer is precious to me and I don't want to waste another summer.
Even though I am stage 2, I also am prepared to meet this mo-fo,again too. I don't know when. I just hope I have time to see my girls get married. But, I have seen women on these boards who were stage 0 get mets so it really is a crap shoot. Even the doctors don't know why it happens to some and not to others.
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smrlvr, the other thing I always remind myself of is that I can always change my mind. Perhaps one day I will decide that I am up for it, or maybe they will come up with some fabbo new recon method that seems like the perfect thing for me. I dunno. The main thing is that for right now, I am really OK with how things are, so why mess with that.
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I am ok with it now too but I think I am still so traumatized about the BC that reconstruction seems unimportant. I think my husband wants me to do it, but he is in no rush either. I don't want to do it just for him, though.
I brought up the whole AI vs tamoxifen for lobular thing with my MO last visit. He said I could not be on an AI unless I was post menopause. He said if I did not get a period one year after chemo he could put me on an AI. Unless, of course my. BRAC test comes back,positive and my,ovaries are removed. MO said if I do not get a period for one full year after chemo he could switch me to an AI. I asked about Lupron to chemically put me into menopause and he was reluctant to put more chemicals into my body. So how bad is it to be on tamoxifen for one year? I get my BRAC test results in 2 weeks.
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Hello
Just wanted to chime in on my reconstruction. Though it looks good, it is a constant source of dull pain. I hope to retire in 2 years and the first thing I will do is get the implants out. I had one put in the other side to perk it up. I really dislike the feeling. My DH loves them but I would have done things differently had I had the time and knowledge when the diagnosis hit.
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We each go into this at different ages, with different personal and family health histories, different thoughts about our bodies before and after BC, different relationship dynamics, etc,etc,etc. It's no wonder we all feel differently about reconstruction.
Reconstruction was a no-brainer for me, I never even considered not going for it. Lumpectomy/radiation wasn't an option for me (multiple tumors) so I didn't have radiated skin to deal with and I was lucky to be able to have nipple-sparing surgery. It hasn't been a smooth ride by any means (3 surgeries and a stretch of dealing with tissue necrosis), but I've never regretted my decision. I suppose I am a success story because I do not deal with post-surgical pain or lymphedema and my DH and I both think I look very natural.
So....reconstruction can and does go well for many women. I am thankful every day that I am one of them. I just feel obligated to put that out there for any newbies dealing with this decision. Unfortunately, there are no guarantees. Try to find the best PS you can who is willing to communicate with you, to hear your expectations and explain to you whether or not they are reasonable. Ask a million questions and create a plus and minus list. Be prepared for a roller coaster ride, there are bound to be some bad days. Speaking only for myself, reconstruction was worth it.
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Hello all,
Thank you for your comments re: reconstruction. I'm weighing both sides now. I thought I was going to have immediate reconstruction - going in stage 1... but I came out stage 3 so it was a trip to chemo and rad town for me. The radiation is a problem because I had decided that I only wanted reconstruction using my own tissue/fat. No implants for me. Never even considered them. I'm so tired of being touched by strangers that I dread the thought of another surgery. So up in the air right now.
Kay
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I chose to have reconstruction post rads with nipple sparing surgery because I had complete faith in my surgeons and have a close relationship with both of them. All surgery was successful, my PS is "agog" at my reconstructed breasts esp the radiated one which he says looks "amazing" (not hard, or off-looking, or anything). The surgery for BMX/immediate recon with no expanders was a non-event. I had nearly complete range of movement immediately, and got out of the hospital a day early because I demanded it, I felt so good and was so bored in the hospital. Little to no pain. Mind hyperplasia found in the "good" breast and not seen on any scans that convinced me I did the right thing.
Just a success story for you. You will find your own path. Note that I waited almost 2 years from dx to have the surgery done.
Claire in AZ
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I am glad we have options. Some people are fine with no recon and others want recon. I chose recon using my own tissue and I'm happy I did it. I feel more "me." BC is so hard. There are many ways to deal with it. No judgments here.
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Jeannie, how long is the recovery for a DIEP flap reconstruction? I am not jumping into reconstruction. I want to take a break from hospitals and surgery. I do want the best reconstruction at some point, but with the least recovery. D nt know if that is possible.
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smrlvr, DIEP has a long recovery period, six weeks at the least. Somebody on the DIEP 2013 thread went to work after 3 weeks but that's pretty early. You're tired. It is usually not as painful as MX but you are in the operating room a long time (12 hours for me!) and it takes a while to recover from that. Some ladies, not me, have to walk bent over for a few weeks because your tummy is pulled tight, causing back pain. I only walked a little bit hunched, no problem. I had a lot of belly fat, though, so probably didn't need to be pulled so tight. Even though the PS doesn't mess with muscle, your belly is sore for awhile. You just want to baby your new boobs for awhile, too. There is tons of info on the DIEP 2013 thread. There is a new DIEP 2014 thread, too. I waited five months after chemo ended to build up my strength and did a lot of squats before surgery since you can't use our arms much. I had to get those painful tissue expanders OUT! I don't mean to hijack this thread.....
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Don't remember if I posted here when the thread first started, but don't think I did...Just wanted to say hi from a relative "old timer"....In 2 weeks, I will mark 8 years since I heard those dreaded words!!! Karen
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Karen,
Thanks for the uplifting update. Nice to hear, Congrats on your 8 year anniversary....
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Hi all,
Yes, it's always great to read good news on these threads. Congratulations Karen!!!
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Thank you, Karen! Love hearing your good news!
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Happy Anniversary Karen! That is fantastic news!
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Thanks Karen and congrats!!!
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Congrats Karen on 8 years! Now that is some fantastic news! Yesterday marked one year for me since I got the call no one ever wants to receive. I posted it on Facebook and everyone was congratulating me for making it to one year and being so brave and such an inspiration, yada yada yada, and I was feeling "meh." Still feeling kind of "meh." I hope it passes.
Hugs to all!
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On the 31st of this month I'll be 3 years since DX.
Karen 8 years is great to hear!
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28th Jan 2010 was the day for me, aged 45, seems like 4 years on, I am the only one remembering! Waiting for results of Mammo and hip MRI, and due left side MRI next week. Fingers crossed all is clear. Hugs to all!
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Betty, congrats to you and best of luck with your MRI!
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Is anyone else kind of afraid to count years and announce them publicly? I'm a bit superstitious about celebrating my anniversaries. I know--completely illogical, but true.
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Claireinaz, a lady posted on another thread, her 5 year cancerversary. I know it's a big deal, but hard to say congrats. We all wish everyone the best, and yes we need to celebrate our survival, but that is a word that is usually used for something we achieved, like a degree, a marathon, childbirth. I had my 6 month anniversary last week...yikes, no celebration here. I guess time will make this less confusing. I do get it that we are saying Congrats on your survival..
Flwarrior & Bettyboo, Congrats, thanks for posting your milestone...
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Claire, I am not exactly superstitious, but I'm also not entirely comfortable announcing anything just yet. I had every intention of posting here after my first scans back in October and November (all clear), but I didn't (well, I guess I just did!). And I'm most candid about this whole crazy cancer thing on this site -- I don't talk a whole lot about it in "real" life. It will be a while, I think, before I feel like this experience is behind me.
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It's not so much a celebration or looking for congratulations, more an acknowledgement of the years gone by since dx, dealing with the collateral damage of treatment which isn't really very visible to others around and still leading a regular life whilst wrapping your head around the fact that any time this fragile peace may come to an end. Quite a challenge.
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BettyBoo......so true...
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if only they would publicise this instead of so many of us struggling enormously thinking there is something wrong with us, i really dont like this different world at all......its a completely different life and i miss my old normal body
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I'd like to hear from people who were posting here in 2008-2009, when I started posting, I would expect most of them to have good news,
In my case I was encouraged when I noticed in the fourth year of followup thaf my team of phsicians were beginning to lose interest in me. Later I learned that the rate of recurrance drops sharply after the third year, which makes me wonder why five years is given so much weight..
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