TRIPLE POSITIVE GROUP
Comments
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Dragonfly: congrats on getting a MO you connect with and what a great report you gave! Thanks!
My new MO called today while I was at the gym and told my DH that she spoke with my pathologist and the 1.3 cm core from the biopsy was not the invasive cancer...it was " precancerous"
So she sending out for an oncotype, and if it reflects low risk, she will only suggest the Arimadex (like the first MO)...... But if it's higher, she'll recommend the chemo/Herceptin treatment. I won't get the results until I get back from Italy....so I'm just going to put it in Gods hands and try not to think about it until I return! I still feel better about this MO..... And that's worth celebrating!0 -
Good info Dragon. Thanks for the thoughtful post. Anyone use melatonin for sleep issues? Is sit compatible with chemo.?
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Kitchenella-I used melatonin during chemo for chemopause sleep issues with no problems.
NMoss-Acupuncture has helped me with 90% of the tamoxifen SEs. I did not gain weight, but I do find it's a little harder to get the weight off now.
Dragonfly-Your jump video inspired me. I finally did it myself, what an amazing experience!
I'm getting an MRI today to get to the bottom of rib and sternum pain. Hoping that it's nothing.
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Yay dragonfly. So is your onc considering you young or old?
I feel those of us in the 40-50 range at diagnosis are in that strange area of not being young but not old either although still young for breast cancer.I also wonder about the "most young women will have a recurrence within 3 years if it's going to happen while those who are older can recur later." Younger women tend to have more aggressive grade 3 cancers. Maybe the recur because the chemo didn't work for them. Hard for them to recur later if they haven't made it to 5 years with no distant mets. Older women tend to have less aggressive (grade 1 or 2). Maybe chemo works a bit less often but the hormone therapy is the big gun so that extra 5 years keeps it at bay if it were going to recur.
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nmoss,
Tamoxifen DE-creased my appetite...so that was a good thing
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Lago MO put me in the "young" category and seemed to categorize 40-50 as young for BC. I agree that it's logical that younger women may have higher rates of recurrence because they tend to have more aggressive BC-makes sense to m.
Nmoss I'm also doing acupuncture to deal with SEs from Tamoxifen and so far it's the only thing that has helped me sleep (previously I was waking up multiple times at night in pain but now I only wake up once, if at all and the pain is toned down)
Sunflower What a beautiful tattoo! Nice to meet a fellow skydive enthusiast:) I actually jump every year to celebrate my birthday. Jump #4 is coming in June...
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Dragon,
So glad you are happy with your new MO!!
My experience is a little different, tho we are the same age, and both highly ER positive.
My OB said the reason younger women tend to recur more, in her opinion, was as Lago said, the cancer tends to be more aggressive, and she defined aggressive as estrogen positive/Her2/grade. Since they can't test to ensure Tamoxifen is working (though the data show it returns more often in younger ER positive women (having periods)... there are no guarantees it is. Therefore the "risk" of estrogen eating cancer returning/forming is higher for women whose ovaries are producing estrogen again because Tamoxifen doesn't work for all of us. (Some of the literature puts that # as high as 50% and as low as 12%).
There is literature that compares "young" women (young defined as ovulating...and still having periods) who just take Tamoxifen to women who have an Ooph/Lupron, with differences in survival/recurrence up to 30%....so I am a little suprised your new MO didn't mention it. It's not new data.
But frankly, she probably believes as my Onc, there is no need to borrow trouble today for something that hasn't happened yet. My Onc said the exact same thing about an Ooph, until my periods came back....
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I deleted that post because it wasn't very encouraging!
Sorry ladies.
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TonLee - it's not all sunshine and roses. I didn't see your comment but I think we are all pretty aware of that and you shouldn't have to always be "up" around here?
Jenn (46yrs at diagnosis so also in that inbetween age...)0 -
I missed it to. TonLee PM me. I'm now curious 0
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Ton Lee
I think I read the post you deleted and although I don't remember it clearly , there was nothing to apologize for.
We should all know by now what we're dealing with.
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Lago - did you not do rads? It's not listed in your signature. Even with MX I thought the ROs try and push rads for us triple positives...
Just curious because I am having to make a decision on what level/type to have starting in June.
Jenn0 -
Hi Kay - At my centre the moment they see the triple positive thing they "throw everything at it". If I had chosen a MX they still would have wanted to do full breast rads!
Always interesting to see what happens elsewhere.
Jenn0 -
I had a UMX and am having radiation, but I had one positive node. My say it's the node that determined my need for the rads.
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Jenn: Mine too....I had no positive nodes but still got the whole gammit....chemo, herceptin and rads and the hormone sucking pill for 5 years. My onc saw the triple positive and that is what was recommended.
And I also had a lumpectomy which is why the rads were recommended according to my onc and BS. Seems there is no standard.0 -
Jen I did NOT do rads. There are so many different things to consider. I was in a gray area. Typically those of us with tumors larger than 5cm, node positve or lumpectomy do usually get rads. I was node negative so that worked in my favor. My rad onc felt I was getting such aggressive treatment [6 tx of TC with H for a year, 5 years of estrogen sucking drug (ESD/Anastrozole)] that she gave me a pass. I also think because my tumor was located in the upper outer quadrant of my left breast the risk to my heart probably played into it as well. I'm sure the fact that you were node positive factored into your rad treatment.0
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I didn't get rads. Makes me worry to think there's something else that maybe should've been done, but my MO based it on negative node. Only if nodes had been positive would I have gotten rads after bmx. She never said triple positive would be a reason for rads. Also specifically said LVI didn't warrant rads.
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Chachamom .. I'm a little confused. You were told your cancer idc cancer was pre-cancer? If you oncotype is high you will received chemo and herceptin for pre-cancer?
I'm not sure what pre-cancer of the breast is but I do know all DCIS and IDC is cancer. Your signature says IDC with the HER 2+ factor. If your final path report is different you might want to change your signature unless the biopsy removed all of the IDC with the Her2+ cells.
Let us know what happens.
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Young bc women have more recurrences and more aggressive cancers? From what I know this isn't always true. I am in my sixties and I have 4 bc dx within 4 years. Each time the dx worsen, being the last one idc with the her2+++. That's pretty aggressive. If I live out my life time I could live another 35 yrs.
I've spoken with other women in their sixties and seventies who have been dx with idc triple negative and the her2+++ . Unfortunately older women do not handle harsh cancer treatments as well and are more likely to die from the treatment or side effects of the treatments.
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Thanks ladies! Tonlee, please repost. I come hear for the truth and holes the docs do not cover.
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evebarry sometimes LCIS is referred to as "precancer." My port surgeon actually referred to it as that.
There is a woman in her early 60's in my building that was diagnosed with triple positive, stage III. We have the same team. She got the same treatment + rads. Yes there are plenty of older women that get aggressive cancers but statistically more younger women get the aggressive (especially triple + and HER+) than older. The older you are the more likely you are to get luminal A breast cancer (hormone positive).
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Ok NMoss...
For all you ladies who have your periods come back and are seeing MOs that say it doesn't matter....I went through this and did my own research, and frankly it DOES matter, even with the advent of Tamoxifen.
I did my research and encourage you to do yours. I'm supplying a few jumping off points here, but there is a LOT of studies out (from all over the planet) showing the benefit of Ooph with Tamox/AI over just Tamox if your periods come back.
Before I post links, I just want to say, I realize this is a personal decision, despite the data. I am in no way PUSHING Oophs for premeno women. It bothers me though when I see someone highly ER get their period back and say their MO says it's ok...tamox will deal with it.
It MAY be in their instance, but the data show overall ...women who get their periods back, and keep them, do NOT fair as well (and the stats slide from 5% to 35% with new data) as women who combine Ooph with Tamox/AI.
I approached this issue as I did chemo, rads, and surgery. I looked at the data and weighed the risk. Frankly, for the obvious % advantage of an Ooph, I figured why not? Isn't this whole tx thing about reducing the chance of recurrence? And an Ooph certainly does that. And by measurable amounts (in some cases higher than chemo!) In fact, in some countries women are forgoing traditional chemo and doing Ooph/Tamox instead, but that is a whole nother issue and deserves its own research/topic.
My next post will have the links that should help start the research process (don't want to make a super long post no one will actually read)....I had all of it saved (I thought) on my computer, but can't find it now. (Of course!) So I quickly found ones I recognized.
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These are not old....all within the last ten years, most within the last 5.
Here we go....
Although early randomized trials of ovarian ablation suffered from small sample sizes and design flaws, a meta-analysis of their results through the Early Breast Cancer Trialists' Collaborative Group demonstrated a clear benefit from ovarian ablation as a single intervention in the adjuvant treatment of women less than 50 years of age with breast cancer.
http://clincancerres.aacrjournals.org/content/9/1/486s.short
Moreover, there are recent data that the reappearance of ovarian hormones may stimulate occult tumor cells in hormone sensitive breast cancer. Therefore it seems necessary to inform breast cancer patients about the possible negative effects of preservation of ovarian function.
http://www.springerlink.com/content/r6v4m18651j17550/
A more recent meta-analysis by the Early Breast Cancer Trialists' Collaborative Group of 12 properly designed randomized trials found significantly greater disease-free and overall survival rates for women under the age of 50 (with Oopherectomy/Lupron), regardless of nodal status,
http://theoncologist.alphamedpress.org/content/9/5/507.short
Vietnamese and Chinese women with hormone receptor-positive operable breast cancer benefit
from adjuvant treatment with surgical oophorectomy and tamoxifen.http://jco.ascopubs.org/content/20/10/2559.short
Together these data suggest that, in hormone receptor-positive patients, adjuvant treatment with oophorectomy (by surgical or LHRH treatment (Lupron)) and tamoxifen is likely to be of
equivalent or greater efficacy than either hormonal therapy alone or standard cytotoxic chemotherapy regimens. These data are the basis for the recommendation of the International Consensus panel that oophorectomy plus tamoxifen should be a therapy of choice in receptor-positive premenopausal women.460 -
There are so many things to consider. Printing out thee research links TonLee will provide and discussing with their oncs is a good thing but every person has different histories. Heart disease can kill you and osteoporosis has major issues too.
Don't assume Tamox will not work. Those of you who don't get your periods back will be switched to AI.
NOTE:
I will admit I haven't read the research but it's all in the details. I also was peri-meno and my onc assumed my periods weren't coming back (and did test me) so I was put on ESD not tamox.0 -
TonLee - thank you for posting that information! I of course will do my own additional research when the time comes for me to make this decision, but I so appreciate the leg up you have given me on starting this. After my first TCH I still had my period...so we'll see what happens after I'm finished...but I will definitely be learning more about this once I get through the chemo phase.0
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Oh and Lago I just saw your post - I appreciate your valuable input as well. These are difficult decisions we all make and having all of the data/input is extremely important.0
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Tonlee I always appreciate your input and especially the links to info. So far I haven't had to make a decision because my periods have not returned after 14 months (although I still think it could happen). In the meantime I keep asking every doctor their opinion as I weigh the options and consider the possibility and what I would do. One of my Oncs did in fact say that getting my period back is a bad indicator and would need to be dealt with (while 2 others have said they would not do an ooph if the periods return). However, she also qualified her opinion by saying that it's a really tough call if you are in your early 40's and that if I'm over 45 when it happens having an ooph would be a more obvious choice.
It's clear to me that if my periods come back I'll have to push for an ooph if I decide to go that way because none of my current providers have a strong stance in favor of it. At least now that I have an amazing MO who will actually have a rational conversation with me, I could take the research to him to discuss if I face that decision knowing that he would take a serious look at it. I'm really hoping that my periods just stay away and I don't have to figure it out-I know that's a cop-out but I'm just weary of the never-ending treatment decisions.
Oh, and Tonlee don't hold back on your posts whatever they may be. I really think that what we experience and think (good, bad or even controversial) has a place here and could potentially help someone. I feel very fortunate to have this forum where I can be totally honest and get supportive, well-educated/researched and caring feedback from all of you who are also dealing with these issues.
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Amen to that, dragonfly! Any and all information helps with decision making. We have to take the responsibility for our own treatment, and the more input the more clear the decision we make for ourselves. Even if the info is controversial, we each make the choice to exclude or include it . So please keep posting all info you find that helps you make your decisions, and we will continue to use our own filters on it. That is what I think, imho. Much love to all facing these very hard and personal decisions.
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Evebarry: I was told that the biopsy core was 1.3cm of IDIS which yes IS cancer but the message was left with my DH who heard it as "precancerous". I also had multiFoci IDC but the largest one was 3mm
So that's what they use to stage it. I voiced my concerns about the HER2+ status and my 1st MO said no need for the oncotype due to the HER2+ staus....my second MO is ordering the Oncotype due to the multiFOCI and "gray area" of the size with HER2+.
Yesterday I spent the day getting a bone scan and CT scan due to an elevated CA27-29 level.
I'll update my profile when I know what I really am!! Lol0 -
Chachamom, I would not be surprised if the 1.3 cm is DCIS (ductal carcinoma in situ). Some docs will call this precancerous, b/c it does not leave the ducts/invade other tissues...it's a big controversy. Yet, it is still dangerous b/c it can mutate into IDC (invasive ductal cancer), and you will see no doc will leave DCIS in your breast. (At least none I've ever heard of.) They treat it like cancer except it does not require chemo b/c by definition it does not leave the ducts.
The 3 mm sounds like a small area that mutated into IDC that is HER2+. Sounds like you had several small areas (multifocal) that mutated.
I had 6 cm of DCIS, within that, a small 3 mm IDC area that was HER2+. That IDC being HER2+ was the game changer in terms of chemo/no chemo/Herceptin. As you know...it's all quite controversial with a tumor that small that is HER2+.
If you can get a copy of your path report that will make it very clear.
Best wishes on the scans!
Hope you are all having a nice weekend. DH has put together my container garden for me, so I am in heaven. Now I can watch my plants grow - didn't think that was gonna happen this year. Yay!!!
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