TRIPLE POSITIVE GROUP
Comments
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Jen404, I think a week is a bit premature. Your docs will know.if you are going in the right direction, so I'd depend on their interpretation rather than what I read here about things that are so different than what you face. I mean, these boards are great for a lot of things, but not for my tumor is gone so should yours be! Each one is so different.
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Jennifer404 of course ladies would brag if they got complete response. That's why you see so much of it on these boards. Check with your onc but I think complete response is not as common as you think. My BS explained that chemo can shrink tumors in a way that makes them "Swiss cheese." So in fact a lot of your tumor might be gone but the foot print is the same. I know a gal who was treated (same onc) with neojuvent chemo, tumor same size, HER2+ but hormone negative. She didn't have complete response. I think they also found traces in the nodes. That's what surgery and/or radiation is for.
On the other hand I had chemo first. I have no idea if any of the chemo/herceptin did anything to my tumor. So at least you know that is had an effect.
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When I asked my BS if we had relied on chemo alone to get rid of my positive nodes (I had my BMX before we knew about them) what is the percentage of PCR he said about 60%. This was his reason for the ALND. I know that radiation might have eradicated what was left but I was not originally prescribed rads, nor did I want it. I would imagine that this percentage applies to PCR in a breast tumor as well. So many factors influence chemo effectiveness - if you are getting a response from neo chemo with surgery to follow I think you should find that reassuring.
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Yes, you are all correct. The last time I saw my BS he reassured me that I was making progress. I just started thinking that it is the norm for the tumor to shrink to where it could not be felt at this point or completely for that matter. So after each treatment I have been checking it waiting for it to see if it has gone down more...and it has, but, not as much as I would like. I will see him within the hour at my appt and have him look over it again just to make sure he is happy with the progress.
Lago-I have heard about the "swiss cheese" thing (maybe from you) and that makes perfect sense. It makes me feel more at ease hearing this.
Kayb-yes, I started herceptin with my chemo...I think I am just OVER thinking everything. I need to relax a bit and let my doctors do their jobs.
Thank you for all of your input. It helps me so much...it all seems so new still.
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Jennifer404
I had neo adjuvant chemo too....mine didn't disappear immediately as far as could tell either.It changed shape and felt harder though. I tried not to get too caught up in at the time because truthfully even a partial response is great! My doctors never said a word about it during chemo but I was afraid to ask because I felt the lump They just said they knew chemo was working. Even just beore my surgery there was still lump....but it wasn't cancer. It was scar tissue.0 -
Jenn 404..
While I was in the middle of treatment I emailed John Hopkins to ask this question because I was feeling the same as you are. This may be a response to someone else but the essence is the same...
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Are there any studies or numbers available regarding overall survival and/or distant recurrence
for a neoadjuvant chemo complete response versus a chemo partial response for breast cancer?
Are there any studies or numbers available regarding overall survival and/or distant recurrence
for a neoadjuvant chemo complete response versus a chemo partial response for triple negative
breast cancer?
Thank you.Replied JHU's Breast Center Reply 1/25/2012 not that i am aware of. go to www.pubmed.com however and see if there has been any articles on this that might contain a little stats info. we are always thrilled to see any response however complete response deserves a party. 0 -
hi ladies
been catching up on all the posts - I have some questions/comments
1. My MO said i have to go off tamoxifen for 8 days prior to surgery - surgeon said its not necessary because tamoxifen stays in our system a long time and even 8 days will not clear me of it. I believe the risk is blot clotting with being on tamoxifen. My question is to all the ladies who have had surgery on tamox - did you go off of it and if yes when did you re-start and how long before did you come off of it?
2. same question about Herceptin. My surgery is booked Oct 01 (bmsx with TE's) and my second last H (Yay!) is on the 3rd - I will still be in the hospital. Problem is that I am having my surgery at a different hospital then where i get my H. Will they give it to me so soon after surgery?
Jennifer in regards to your question about neo chemo. Mine could not be felt after the 2nd round -about a week after the second round. But i could still feel a thickening even towards the end. I thought for sure i still had a tumor left but i did have a complete response at surgery. Being highly triple positive i think it is rarer to have a pcr but i must have had some bad ass fast growing tumor
on the subject of ER positives recurring longer out then ER negatives (both her2) what is interesting is that i have read a few studies (very small) that the prognostic significance of having a pcr is more relevant in ER- than ER+. So if you have a pcr and are ER- the chance of recurrance is extremely low. However that is not the case with ER+, so what this may tell us is that ER+ Her2+ cancers are different and that the er component can be fueling this cancer even if the her2 component has been addressed (chemo and H) Since you can't elimate all sources of estrogen in your body it makes sense that ER+ and Her2+ can reaccur years out. The good news is for people who don't have pcr with ER+ you still have hormonals in your arsenal.
not sure if this makes sense but i am on her2support.org and there have been several studies posted on this. I asked my surgeon about this since i had a pcr and thought that this was great. He said the prognostic significance of pcr great regardless of hormone status so I am not sure what to believe!
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What does pcr stand for?
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pathological complete response - it means there is no invasive cancer after surgery for those people who do chemo prior to surgical removal of their tumor
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rozem - I am not on Tamoxifen, was on Femara (have since changed to Arimidex) at the time of my exchange, but my PS wanted me to stop at least a week before and not start again until at least a week after the surgery. AIs also have a clot risk, but it is not as high as Tamoxifen.
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solitantio - yes depressing for me too - 95% ER positive with a complete response - didn't want to read that! probably just means that if (hopefully praying NOT and knock on wood)IF there are any cells left after all this horrid treatment that our AI's or tamox will starve them
chemopause started for me after 2 doses of chemo - I had 2 (very heavy ones) while on chemo and then thats it -NADA since then
SK - thanks - I guess i am going to go with what the MO recommends - its a big surgery and as much as i don't want to be without my tamox it scares the crapola out of me that there is a blot clotting risk - ahhhhhh the worry never ends
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Soltantio understand that not all ER+/PR+ highly or not recur late. Late recurrence isn't a given. You hear stories of women living into their 80's & 90's with no recurrence. I know this one woman in my building is a 30+ year survivor. They can't all be hormone negative.
If you remember the article I posted the other day stated that the risk after 5 years is a lot lower than we all think. Also remember this study didn't include Herceptin or an AI (which improve our prognosis). It also includes women that are only positive for hormone receptors and also may have a low grade (higher risk of having a late recurrence). Note the article stated "low grade" not "moderate grade" for late recurrence.
The odds are really in our favor that we will be OK. Just don't do anything stupid like start smoking, take HRT, gain a ton of weight and stop exercising when your treatment is done.
No guarantee but there is a really good chance you're going to live to have something else kill you… like old age.
Here's the link to the article again.
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When you're still doing treatment I found a tendency to focus on the "what ifs" at first. Then I started to really force myself to understand that these "what ifs" are just than and not "whens"
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Roze,
I stopped Tamox 7 days before my exchange. Started back 7 days after.
Hope that helps.
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On a personal note. I find it ironic that the very tools (statistics) that said I wasn't at risk for BC, are the very same sort I turn to for comfort about it not coming back.
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Does anyone stop Tamoxifen before flying to reduce the risk of clots with that? If so, only long flights? Or all flights?
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Ok...went to see the BS. Been talking about my breasts all day. Lol. I think he was a bit disappointed in my mx decision. But, was respectful.
Lago-my BS and my PS agree with you;) they really seem to think the odds are in our favor. It makes me feel better.
I asked my BS If i would need a scan before surgery and he said I would not have another scan/MRI til I was done with herceptin?????sounds like so long. He also said that even if the tumor was not gone...there would not be any cancer left after chemo. Wish I had taken notes while we were talking.0 -
Lago - thanks for the reminder about "what ifs." Im still struggling with that so much - its like a daily battle with myself not to get dragged down into those thoughts. I searched for your seatbelt speech the other night because I needed to read it again -- ha ha. You're the voice of reason - thank you
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lago - Here is the article I was thinking about. It's a small study but interesing in the way they divide the HER2+ patients according to ER positivity and then look at the pCR.
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Hey I'm not perfect either. I have my moments. The last 3 days I've woken up with slight headaches. Seems the Excedrin works but not as fast as it used to. Now I could get all freaked out but then I turn on Ms Rational. I realized that this is probably because I'm grinding my teeth. Tonight I have to wear my night guard.
BTW brain mets seems to be one of the last places bc likes to go.
Omaz thanks for the link. I just read the abstract. It talks about pCR but it still doesn't say how this effects recurrence.
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Omaz I don't have a subscription. I assume this is a pay sub.
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Sorry, I have institutional access - I can email to you if you want?
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omaz thanks for the link, i guess my pcr is rare since i am so highly er positive
didn't want to be a downer on the whole reccurance thing, I was just pointing out that ER+/Her2 positive tumors behave differently then ER- as seen in pcr rates (like in the article that omaz posted)
lago - I have been told my several MO's that those with pCR have very good outcomes but of course, like all things cancer there are no guarantees.
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I probably know this already and have forgotten on my chemo brain, but if the tumor is invasive, even though small, how can cells not be in your blood stream? If you are told you don't need chemo due to size, but it's invasive, aren't the cells going somewhere?
I scheduled my final fat grafting today. September 21. I was going to wait a couple of months, but my husbands company is shopping new insurance companies. I have maxxed out everything for this year, so didn't want to miss my window . After that, I am done, except for the tattoo touch up I need.
I haven't seen the BS since I found my armpit lump, and that was the only reason I saw her. I'm on an as needed basis there. My onc, I am seeing everything three months and twice a week at yoga. I hope he never cuts me loose. I don't think I could handle no contact or monitoring.
I head down Sunday for my sixth and final for the year, vaccination trial atWake Forest. I have to say I will be glad not to make a trip every three weeks and get back on a normal schedule. It has been fun though and so interesting. Then, I am done until next May.
Seems weird to be Contemplating a total return to normalcy. There is a study at IU Med Center on post chemo tiredness. I am looking into it. I still have days, like today, where I run a bunch of errands and come home wiped out. I can still work out the same, but it is a weariness.0 -
Sol - Sure. Sorry about the downer but on the other hand the second article shows that those with higher ER expression respond better to tamoxifen. So maybe its a balance thing between chemo/anti-estrogen and the HER2/ER.0
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Thanks for the advice on gas, ladies! I will look into all the suggestions. Also good to know that I should expect this for the next 1-2 years. You guys are the best sources of information!!
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Just reporting in that I've finished Rads. Had a Herceptin treatment also yesterday. My blood counts are still below normal. I suppose that is why I have no energy. Hopefully they will gradually get back to normal. I'm still digesting the fact that Chemo and Rads. are over.
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rozem - my BMX with immediate recon is scheduled for the 28th Sep and my PS said to stop Tamoxifen 10 days before. No idea for how long after yet though...
Jenn0 -
Hi rozem,
Your 1. I have been on hormonals at surgery time and was getting preventively anticoagulants (Pragmin) for some days. Please speak with your surgeon about!
Best
Usha
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Many of us who are not high ER/PR and on Tamoxifen were concerned because we have read that Tamox may not work as well on us. But it sounds like it may not need to. Those who are HER2+ but ER/PR- have the highest chance of early recurrence as we know.
So IMO it almost balances out when you put both late and early recurrence in one bag.
I still feel it's better to be ER/PR+. Like I said before late recurrence even if you are highly ER/PR+ isn't as common as you think. Many oncs are keeping women on AIs or Tamox an additional 5 years. I wish I could find the article but it said that this is most beneficial for luminal A cancers but not so much for lumina B. For those of you that are highly ER/PR+ I would ask your onc about this.
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