TRIPLE POSITIVE GROUP
Comments
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Shore,
It is for women with positive lymph nodes 1-2. Since you didn't have any positive lymphs, I don't believe you would benefit from it.
Frankly I was surprised to hear they let anyone get through that dept without rads...lol. They told me in 2010 that a single node was getting radiation even though it wasn't standard care yet.
Since one of the women I talked too is 77, I am assuming they might not have been as aggressive with women over 75..and skipped rads. Now however, the benefit far outweighs the risk because they're calling them all back.
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klb I wouldn't bother ettin a hospital bed unless u really fin them comfortble, geeze when I'm in the hospital I sleep and sit on a recliner but to each his own. I'd always go for the recliner.
I' m glad so many of u had a choice cuz u'r all young and a choice was a good thing for u.
And moon I really feel bad for u with all this mix-up
Special K I didn't realize how close u were and are to all that happened wow--and u should be so proud of u'r husband and son.
I go for some tests tom. but just simple ones so it won't take long.
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shore and camillegal - thanks! I am poud of them both. One of my prized possessions is a picture of them together, my DH in his Air Force service dress uniform and my son in his fire department dress uniform, that we had taken along with our family portrait. At DH's military retirement ceremony he presented his folded flag to DS - who wore his fire department uniform to the ceremony - it was pretty cool.
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Kltb I was never comfortable in a recliner. I think I'm just too small. Even though I'm 5'6" my height is all in my 33" inseam legs. When I sit I'm the same height as someone who is 5'4"/5'3"
I bought lots of cheap pillows at Target. Made a giant wedge. As I felt better I would remove pillows lowering the angle. Worked well for me. I sat in regular chairs. Never understood the folks that got a hospital bed… I hated the hospital bed. Kept sliding down.
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I did not have a recliner either - just lots of pillows, but I know that you can rent them from medical supply houses. A lot of people use those foam wedge pillows.
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You can try renting a chair. I brought a lift chair/ recliner because of my bad knees. I could barely get off a couch or chair anyway and not using any ARM or chest muscles makes it really hard to do. Good luck on your decisions.
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Thank you very much for your inputs. Nobody's opinion/decision is wrong. We all decide what we think is best for us after careful, objective, and subjective considerations.
TonLee, i kinda like my good boob, too, for the exact same reason!
SpecialK, my BS is even more conservative. However, both BS and MO are considering ooph. So i, too, am seriously thinking about that.
Lago, thank you for the link. I was doubly interested to read since my best friend has just been diagnosed with ADH.
For now, Ashla summed it all up for me. It will be the boob or something else which will keep us awake any other night.
Ktlb, good luck with your docs/tx's/surgery. And yes, a hospital bed is not a furniture! I never liked being in the recliner during infusions. Always took the bed if available. But a recliner at home, in front of the tv, is one of the best places to be!0 -
I lasted in a recliner for about 4 days. I couldn't get comfy either too much. My rear end would get numb.
I did have the foam medical wedge pillow in bed and loved it.
Reading all the tamoxifen stoppages has me a little paranoid. My PS only says to stop it a day in advance. I am having some more lipo and fat grafting next Friday and wondering if I should just make the decision to quit this Friday.0 -
Fluff,
I didn't stop Tamoxifen at all for my Ooph. And only stopped a couple days prior for reconstruction because I read it here....my PS said I didn't need to stop taking it.
All that to say. I think you'll be fine
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More good news on the BC front especially for us Her2 pos girls.
Looks like there is a new test that can accurately predict whether Herceptin will work for us! It tests tumor response and can be done prior to treatment. It's a small study though.
I've posted this several times but I repeat..I have a dear female friend who is a world renowned researcher and professor . Her life time of research was in the field of hormones with an emphasis on female fertility. She is also a 12year breast cancer survivor. She said if you had to have cancer..right now the best cancer to have is breast cancer. There is enormous progress being made and it seems that the science with regard to HER 2 is leading the way. Let's try to remember that every day.
"
20/20 GeneSystems, Inc. (www.2020gene.com) will present results this week at the Breast Cancer Symposium 2012 (San Francisco) of a 45 patient study showing the usefulness of its PredicTOR ™ test in predicting response of breast tumors to the drug Herceptin®. That drug blocks the HER2 pathway which is activated in many breast tumors. However, about half of breast tumors treated with Herceptin® do not respond to that drug, often because a second cancer causing pathway, mTOR, is also active. 20/20's PredicTOR™ test measures key proteins in the mTOR pathway in order to suggest that tumors may also benefit from treatment with a drug that targets that pathway.
Using tumors surgically removed prior to Herceptin® therapy, the 20/20 test correctly classified 28 of 32 tumors that ultimately responded to the drug and 10 of 13 tumors that failed to respond. The company plans to further validate the test in the coming months using samples from several hundred patients, and if successful, hopes to make its test available to oncologists by this time next year. Those patients with a positive PredicTOR ™ score would likely be prescribed an mTOR inhibitor in addition to Herceptin®. Currently two drugs that target mTOR are approved in the U.S. with several others in late stage development."
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this week at the Breast Cancer Symposium 2012 (San Francisco)
So that's why my onc wasn't around when my scans came back yesterday. BTW all is fine with my liver scan (leasions/cysts stable). Don't know if I will need to be scanned again. Have to wait till my onc comes back.
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Lago, I am happy for you. Yay!
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Lago, Yay! great news on the scan
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Lago - great news!!
ashla - thanks for the article. I need to have some of you do all my research and take you with me to my next RO consult. Oh well, guess I will do it myself - not like I don't have time on my hands
shore - hope your revision went well.
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Hi all! Had my left 1st & 2nd level node removal on Tuesday. Back home now in St Augustine recovering. Just wanted to give update. Doing well. Painful, but pain meds helping. Feeling a little loopy from them. Not sure how many nodes removed yet. Waiting on path report. My plastic surgeon closed my incision, so hopefully pretty. Lol! He's a great guy. Having some numbness back of my arm. Forgive me if I'm rattling, pain meds are hitting. Hope everyone is doing well. I need to catch up.
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Fluff, my PS said I didn't have to stop tamoxifen for exchange or the revision I had yesterday. I wouldn't like to miss a day so im glad.
Kltb, thanks it went well.
Lago, happy you had good scan.0 -
Ms Tori I only had level 1 node (10 nodes) on the left. I still have some numbness but not too bad. It took over a year I think for it to recover. Look at it this way. As long as your numb you don't feel pain.0
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MsTori, heal fast!
As for me I am out of the hospital(waiting for the nurse to get here to give my antibiotics) and back home lopsided again. Decisions to make, like do i try a third time? And if not what do I do with the other halfway inflated TE? Just want to be healthy.0 -
Lago- l hadn't thought of it that way. Haha! Weird feeling liking its itching, but numb.
Guess just the nerves acting up.
Slowly catching up on posts- congratulations on the negative scan :-)0 -
Hey, we are getting close to 10,000 posts!
Ashla, thanks for the info, and I do like hearing the new stuff. Especially when it is GOOD!
Shore, I'm sorry, I missed your post as I've gleaned from others response. But I hope everything went well and that you heal fast! Much love. Sorry if I have missed anyone else, been a bit busy myself. LOL0 -
KayB, um, as a person who could definetly donate some of that fat you are looking for, I am playing a sad song on a very, very, tiny violin..:.... LOL.
I am glad you had good news though.0 -
lago - yay on the good scan - liver stuff is a nervous-making thing, so glad it is all good!
mstori - glad your surgery went well - as lago said, it took the better part of a year for the node arm to recover normalcy. You will most likely feel pins, needles, itching, burning, odd sensations when parts of the arm are touched - like you are feeling it on another part of the arm. The thing is, all of that is normal so don't let it alarm you. I kept that arm quiet for a while, like maybe two weeks, so as to try to reduce the risk for LE, did not lift anything or put my arm over my head. Did you receive any instructions like that? I didn't really, but had read it on this site. My arm has normal feeling now, the only thing I notice is that when I shave the underarm on that side I get a zing on my shoulder blade - weird, but I am used to it now.
kayb - glad your nodes are good - had to be scary - and yes, I am officially jealous of your low body fat. I look small in my clothes, but I seem to have some flubber where there used to be muscle, lol!
moon - glad you are out of the hospital, and so sorry that you are once again facing TE complications.
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Hello everyone! This is my first time posting, so I hope I don't commit any faux pas. If I do, it's not intentional.
Was just diagnosed on September 5 with ILC. It all started with my annual mammogram on August 8. I was called back for a diagnostic mammo the following week. They referred me to a breast specialist because of suspicious calcifications. Had an excisional biopsy done on August 31; they couldn't do the nonsurgical biopsy because of the location of the calcifications (deep, next to my chest). So, now I am a member of the pink sisterhood!
From what I have seen, it looks like I am sort of an uncommon combination: ILC, Triple +. Met with BS yesterday for pre-op. I am conflicted about whether to have a lumpectomy with chemo, hormone, herceptin and radiation or mastectomy. If I decide mastectomy, I would want bilateral and reconstruction. Yesterday was leaning toward lumpectomy because my understanding is that there is not a difference in recurrence between the two surgeries; also avoids more risk of infection, complications with the more involved surgery. I know this is a personal decision, but any thoughts/rationale you could offer would be appreciated. It seems to me like more people on this forum have opted for mastectomy.
Already, I feel honored to be among this group!
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Great news Lago ! Yippee! Welcome home Moon and Tori a speedy recovery.
Nice new pic Lago.....you get prettier all the time...inside and out!0 -
Welcome powermom....
Leave the Emily Post stuff aside because you're among friends here. If my experience is any indication...among the best friends you can ask for during this bc odyssey.
I chose lumpectomy...after neo adjuvant chemo.... after much serious consideration. My medical team advised me and all the research shows the longterm survival benefits are virtually identical. At first my thinking was that it would alleviate the worry. As I read through this and many other forums I realized that the w orry never really ends no matter what we cut off and do. My BS also told me not to panic if it should recur. I will be monitored carefully for life and that recurrence in the breast will not kill me.
Right now I'm at peace with my decision.0 -
Hi power mom and welcome
You asked for opinions regarding mx or lump so here is mine from my own experience of choosing a lump.
Early testing (mammo & ultrasound), sized my tumour at 2cm on the outer portion of my breast. If you imagine the u shape of a boob, my tumour was at the bottom of the letter u.
I had large breasts so was offered a lump with combined breast reduction OR a mx.
I decided on a lump because I felt psychologically that it was better for me to wake up with some of my original breast. I knew that it would have taken me longer to get over a complete removal even if I had opted for reconstruction, because that would have happened later. I was never offered removal and immediate reconstruction so cannot comment on that.
I healed very quickly and was on holiday 4 weeks later. BRILLIANT IN TERMS OF RECOVERY And I had a great cosmetic result. I did know that eventually I would have to face a reduction on the other size, but to begin with there was no immediate size difference. Now, 18 months later, after rads, I am a good cup size bigger on the other breast.
I also based my decision on the fact that there is no significant difference in survival between mx and lump with rads. I felt glad to have the opportunity to follow surgery with rads as well. Recent research has shown an important survival difference with radiation post surgery, so I was pleased I had opted for this route.
negatives: I didn't get it all over and done with in one hit and I have had a cyst. However, this is being drained shortly and I've been told it isn't too painful.
Hope this helps. Just my experience.
Good luck
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Kayb I think TonLee takes the cake when it comes to being in shape. "Ton" stands for "tone" and "Lee" stands for "Bruce Lee"
Powermom There are pros and cons to both surgeries. One thing I have learned with this disease is the glass is always half full AND half empty. I didn't have a choice. Big tumor small boob means MX. Had stuff in the other side (LCIS) so I did the double. My chances of having a new primary is much less now that I had the BMX. Once you've been diagnose your risk does go up for a new primary but they watch you much closer than before. I know 2 women that did have a new primary and they are both doing well. Both times they did lump. BTW just so you know once you do radiation that area can't be radiated again in most cases.
ILC & triple + Yes that does sound more unusual but ILC in general is not as common as IDC. I would also chat with some women who have ILC too. The risk of recurrence or new primary might be a little different than IDC. I'm not as knowledgeable on ILC so I hesitate to comment. The more information you have the better informed your decision will be. Just be sure to check with your doctors about all the info you get here. Not all of it is accurate and many times it's just misinterpreted
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Ashla- thanks for the info. It has been a tough week for me as I had to go into the hospital this week for some complications. I find that when I am down physically I am down emotionally...so reading that article continues to give me hope.
Lago- yay for the scan! And your new pic is beautiful.
Kayb-I am working had to get my fat down. You are an inspiration. It is soooooo hardddd....
Mstori and moon- hope you both are feeling better.
Powermom-it is a personal decision. I asked these ladies the same question about a week ago and they are such a wealth of information. I decided on a bmx. For a few reasons, mostly because I have dense breasts and fibroids, and I already worry about every lump and bump, and I am just not convinced that they won't find anything in my "good breast". I have made the decision and know that come what may, I am at peace with it. And that is the most important thing.
Special k-I know it is late...but, I found your story touching and wanted to say thank you for sharing:)0 -
Powermum - lumpectomy usually goes with radiotherapy afterwards and that can have quite serious long term effects. Ask your doctors or nurses for information on the risks and research it yourself.
I initially chose lumpectomy not realising that rads could be so harmful and am now going back for a BMX after quitting/refusing the rads.
I started a thread here called "Remind me why keep the breast" you could look up - sorry, am on my ipad and cant link to it from this message.
Jenn0 -
Wow. Thanks Lago...lol. As I sit here eating a faux hot fudge sundae! I was just getting back into upper body strength training when I caught my son's cold. I can't ever remember being this sick with a cold. Stuffy head (and ears!), chest congestion.....when I do cardio, just a tiny exertion gets my heart beat up above my 95% range.....I wonder if the EF problem plays into this.....Anyway, I've got some work to do...my triceps are jiggling...well, were jiggling....I spent the last week doing a LOT of dips.
Powermom, I am so sorry you are here. Here is my experience.
I opted for a skin sparing MX (they leave your skin), cut off the nipple and scoop out the breast tissue, with immediate reconstruction using alloderm with TE placements. Chosen primarily because I didn't want rads. But I had positive nodes. So I took rads anyway. lol
Knowing what I know now, I would have opted for the lumpectomy. Don't get me wrong. The frankenboob looks great, I don't regret it. But I don't think it was worth all the pain from the TE, and the time involved. And no matter how great it looks, it's not MINE, it doesn't move like a real breast. I can't feel anything...and that's a big minus for me. Turns out the MX was just a little too high maintenance for me. I don't know about anyone else but the one thing breast cancer made me super conscious of is time. If I had it to do over again, I wouldn't have spent so much time on the frankenboob. And all the downtime it caused. I'd choose a lumpectomy, and three weeks later be ready to roll and not have to deal with all the reconstruction blah blah blah. Totally not worth it in my opinion.
You may be a candidate for a nipple sparing MX if you decide to go that route. My advice. Consult a plastic surgeon before making your decision. It really helps because he/she can tell you what they can and can't do for you.
Good luck!
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