TRIPLE POSITIVE GROUP
Comments
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robin - no such thing as too much support and good wishes! Thanks!
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Best wishes SpecialK!!!!0 -
Arlene - thanks! How is everything in your neck of FL?
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SpecialK. Adding my thoughts and prayers. You are indeed a SpecialK..
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No kathy I dont have no mets please dont jinx me lol.....It was only in lymph nodes. Can anyone tell me what resconstruction is better after radiation. Im afraid of hernias with tram flap!! Anthoner thing is why is it harder to lose weight when ur menopuse! Next is my TSH is low so does that mean hyper or hypo, when i first had issues woth it they told me hypo. WBC is low too now not sure why? Im done chemo&radiation& only on herceptin
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Hey ladies, I have a hypothetical for you and would like to know what you would do in the following situation:
You are:
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in your 20's,
triple positive IDC Grade 3-- highly hormone sensitive,
originally had a 2-2.9 cm tumor and 1 positive lymph node,
had neoadjuvant chemotherapy: TCHP,
had an excellent response to chemo, tumor disappeared completely by second infusion,
now a pCR,
and will receive Herceptin and Perjeta for the remaining 7 or so months and will shortly begin Tamoxifen.
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So, the question is do you now get radiation even though you are T0N0M0?
Remember: you are only in your 20's so you have a much longer time to develop secondary cancers like sarcoma (chances of secondary cancers from radiation get higher and higher the further out from your treatment). This is a very topical question as neoadjuvant chemotherapy and pCR are becoming a common occurrence among BC patients. Ask our medical team and/or get a second opinion you say? Done and everyone is divided with mixed opinions abound. I simply post this to see what YOU would do. There is currently no standard of care for this situation as illustrated in this short article from leading experts: http://journals.lww.com/oncology-times/Fulltext/2...
And now you know our situation lol. I guess it's better having the question than having a worse outcome at surgery and having our choice clear. I appreciate you ladies!
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...if it was me, i wouldnt. i would save it for later, if necessary. even though i came through it like the breeze, i still wanted to save it for a recurrence. but they would not let me.
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ben50 There's a lot of info we don't now but if I had a lump or no surgery I would definitely do rads. You don't know what the technology can't see. They assume they got it all but who knows how the tumor shrunk and what it might have left behind.
If I did have an MX then it would depend on location and what other collateral damage. I was in a grey area and I got a pass. My guess is I would lean more to not doing it.
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Ben50 - will you be having any surgery? Such a hard decision - especially at such a young age. Dang I am 57 and worried about the side effects from my regime effecting my quality of life - can't imagine how this must weigh on you. But I think I would most likely go no rads.
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Oh I'm sorry, failed to mention that bit of important of information. My wife indeed had a BMX (two weeks ago from today actually) - that's how we discovered the total pCR. I'm talking about radiation on the lymph nodes and chest wall.
You gals are bringing me some comfort/relief as you're mirroring our current feelings of leaning away from radiation at this time. As the point-counter point article I link showed, there is evidence showing that one positive lymph node before surgery which then becomes N0 responds and has recurrence rates akin to never having a positive lymph node (of course the counter point to this was the sample size showing this was not very big).
It's kind of funny, our initial diagnosis of T2N1 that became T0N0 is like the perfect stage of unknowing with no clear medical guidelines. With consideration to our age -- it just sucks! We have a long time to get a recurrence -- which is why radiation could be useful -- but we also have a long time to develop a secondary carcinoma from radiation!
The good news is achieving a pCR puts us in good shape, regardless - we try to focus on that
. Thank you for your replies!
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Hi Ben - with that info i would definitely swing towards no radiation in my mind - agree so much time to reoccur but radiation doesn't mean no chance of recurrence - unfortunately nothing gives any of us that assurance. And you are right to have a pCR is great!! I wished I'd had the option of neoadjuvant chemo - but didn't qualify - I think it must be some comfort to know that what you go through is actually working. Good luck with whatever choice you two make.
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linda505, i am wondering why you didnt qualify for neoadjuvant? they even offered it to me, and i guess somehow, i was under the impression that they actually preferred to do it that way, so they could really know for sure if the chemo was working. i know in my case, they wanted to shrink it, at least, because they were afraid it would leave the big divot. was bigger than an inch, and with clear margins and all, was quite a chunk.
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Hey Kathec - I didn't qualify because I had bilateral breast cancer and one was HER2+ and one wasn't - for some reason that left me out of the regime.
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Eileen - thanks!
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Anyone know if you can have an echocardiogram hours after a petscan?
I now have both scheduled for Monday. Echo for MO and Herceptin follow up. Petscan is stat for RO after my CT scan showed a suspicious lump. Possibly scar tissue from drain tubes or rogue node.
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kathec I asked why I wasn't getting neoadjuvant. I was told my tumor wasn't big enough by my BS. Speaking of BS that's what it was because a friend of mine (that actually lost her battle a few weeks ago) had a tumor the same size as mine. The difference is she had it in her nodes. Maybe my BS didn't want to put me under twice. Once to do the SNB then again after chemo to do the BMX. He thought I would have it in my nodes but micromets. All the imaging said I didn't.
Either way it doesn't matter. Both are just as effective.
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Funny, lago, cause that is what i called MY BS B'Ser! i do have a new one am getting to know HOW she is... yeah, my ol one was Pissed at me for not wanting to do chemo first. then she seemed mad again at me when i refused to do node mapping with the blue dye, when we already knew it was in many nodes. i just really didnt want to, esp when she told me they were going to yank them ot regardless. Today i am just so angry about the whole thing all over again. I mean, i never went to docs, before this, and now, after TX, i have so many new and wonderful things happening to me, NOT, and they just scratch heads and say hmmmmm never seen THAT before!?! wthat the muffin phuck?
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How did cancer change me? Odd. Several have asked me that question lately. Like Pbrain and others, am less tolerant-as I put it-of crap. I realize how precious time is-and I refuse to spend what little free time I have with those who irritate, embarrass, or wish to spend their time talking "about" rather than talking "of". While I do not have the finances to do the bucket list due to the #$#@ ex-husband-I am letting go of the anger and enjoying what I can do. And letting my attorney handle the property settlement with the offer of paying extra if he manages to complete without me having to see the withering bag of worm bones. If I start a book and do not enjoy it-I do not force myself to finish it. I just stop. Would never have done that in the past. I have spent many many Saturday afternoons napping. And a w/end watching every episode of Orange is the New Black. And did not do any grading or work for the university during. Just watched. With real popcorn. And beer.
I am letting guilt go. And adding more love to those who are special. Not trying to add fixer uppers to my life. I am NOT going to find one more male species who needs fixing. Or who wants to fix me. I am good. Thanks.
And if my cancer comes back. Well. It just does.
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I thought of one BIG change for me. I actually let people take pictures of me, and I post them places. I never think I take flattering pictures.
Then, when faced with my own mortality, I decided I didn't want to have some kind of funeral and people would be looking for pictures of me and there would be few to none, lol.
Now I'm just glad to be here and don't date how they look, as long as it shows how happy I am.
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"the #$#@ ex-husband-I am letting go of the anger"
SusanHG you're almost there but not quite. Granted that one will take some time.
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lago, maybe because that is just because it has become his first name, over time!
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Robin - thinking of you and praying and hoping for scar tissue!!
SpecialK - I am in your pocket today - here is to fast healing!
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Question for you all - I saw my MO prior to my surgery as there was time while I was waiting to get in so I was able to have that neoadjuvant discussion with him - he did actually try to get me approved for it - but was a no go.
Anyway - at that first appointment - prior to surgery - he ran the full battery of blood test and my CA27-29 score was a 9 - so totally normal. At that time I had two tumors - one in each breast - each over 1 cm - I am concerned going forward that this test will be useless in monitoring my body as it sure would not have indicated a problem that we absolutely knew was there - I do intend to talk to my MO about it - but was curious what you all think
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Linda my MO doesn't do tumor markers because they are unreliable. In some people they are accurate but others they are not so she doesn't bother. I've never had one.
Kathec you have a point
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Thanks Lago - so I guess then you and your MO just rely on symptoms to signal a need to look into things. That kind of scares me especially since I really didn't have any tests other than the bone scan to even have a bench mark.
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all the doctors in the us follow nccn guidelines as to which tests you get for each stage. mostly. i think. i dont' know how to make a link to them, i guess some one else might?
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Thanks Kathec - I found a link to the guidelines using my good friend Mr. Google
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yeah, they are pretty interesting.
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linda - my MO did a pre-chemo PET, a post-chemo PET, and a PET one year after treatment, but I was node positive. He also does a full battery of blood work prior to each appt. - ask about doing a CEA, it may provide some info for you. It looks like CA 27/29 is not a good indicator for you, mine does show ups and downs, but if affected by inflammation - it was twice the high normal right after chemo - we freaked!
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I have missed so much in the last couple weeks! My mom decided to do chemo, mostly because she is hoping it will clear up the pleural effusion she has due to the cancer. After all the pre chemo drugs, she had a severe reaction to taxol just 10 minutes in. Turned beet red, couldn't breathe and had severe back pain. Needless to say they stopped the drip right away, gave her more benedryl and steroids and things calmed down. She was then able to get the carbo and Avastin. She will get the Neulasta shot today. They are going to try her on Taxotere in 3 weeks. That is if she decides to continue the chemo. I got the report of her PET and basically she is full of cancer from her neck to her groin, including a spot on her breast. I don't think the MO even told her about all of it, which is ok. I have seen her decline in the last few weeks. I really don't think she will make through the summer
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