When do most recurrences for HER2 happen
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Hello ladies--
Last week, I had a hysteroscopy and D & C to check out some very light breakthrough bleeding I was periodically experiencing. There were fibroids that he couldn't totally remove. Before the procedure we talked about the possibility of having a hysterectomy out of concern that the fibroids could someday turn cancerous, especially since I'm on tamoxifen (have been for about a year)
(note: I'm ER/PR + and Her 2 +)
I see my ogbyn Friday to talk about the results of the biopsy on the fibroid, and next steps. I happened to see my oncologist next week as part of the neratinib study.
I just want to be prepared for both visits: Are there questions you ladies suggest I ask both docs so I can be prepared? Or weigh in on hysterectomy or no hysterectomy? I thought only BRCA 1 or 2 women needed them in the treatment of BC?
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Hi geminihalf. I had a hysterectomy in February this year. I am BRCA-. My onc suggested having my ovaries removed to keep me from having my periods return (I was 44 at the time and premenopausal but in chemopause for many months). Also, I had a history of uterine polyps and she was concerned about that with Tamoxifen, etc, so we went with the complete hyst. I had a LAVH - laparoscopic assisted vag hysterectomy. I stayed in the hospital one night but not all docs require that. I was in pain the first day/night, and then felt pretty good after that, although continued with restrictions for several weeks regarding lifting, exercising, etc. I really didn't ever need pain meds after the first day. I have 3 tiny scars where the scopes went in, but they are not noticable. I have had no real side effects from the surgery (I was already having lots of hot flashes from chemo). My bone density is fine, etc.
The choice to have the surgery certainly depends on your docs recommendations, your age, your fertility hopes (I was done having children). But if you do choose to do it, I highly recommend the lap surgery - and I had to go to a new gyn for the surgery b/c my gyn doesn't do them. So maybe check if yours does and if its an option for you physically.
Best wishes for good results on your fibroid biopsy, and surgery decision. I'm happy to answer any other questions you might have.
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Saralmom--
Thanks for the great info! And your willingness to answer questions.
Did the fact you are er/pr + and her2 + (like me) factor into your decision? Or was it because of your history of polyps and the fact you're on Tamox.I'm a "young" :-) 43, and have not had kids. I think that train has left the station. So I KNOW rationally, that I don't need the plumbing, so to speak. But the idea of lopping off these body parts--I dunno--it just makes me uncomfortable.
Did your onc weigh in on the decision at all?
What sort of drugs or treatments--if any--have you had to take as a result of the hyst? What are the long term effects? Did it change your sex life at all? How long after your treatments
ending did you get the hyst? Just so I'm clear, why is it important for your periods not to return?
Again, thank you thank thank you!
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Hi geminihalf - here are some answers to your questions above:
My ER+ status def played into the decision. As a way to limit the amount of estrogen being produced in my body. My onc did weigh in, but her concern was more about staying period-free - she said that premenopausal women who stayed amenorrheic had "better outcomes." In fact, my brother in law who is a GI doc had sent me a study saying just that last year. So those 2 things were what sparked the discussion about ovary removal, and then add in the history of polyps and I was the one who suggested the complete hyst. Docs agreed. I am not on any drugs or treatments as a result of the surgery. Still just taking Tamox and Vit D. I had the surgery 6 months after chemo, 3 months after rads, and during my year of Herceptin. I would say that cancer sort of changed the sex life part generally but not drastically, and the surgery didn't really affect it more than that. I never really thought of it as lopping off body parts, but I know that's how it feels for some women, so I can understand it. Just wasn't my experience.
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Would you say that staying amenorrheic if you are NOT hormone positive is also a factor in terms of outcome. My period came back last month and is on again for this month. But I am ER- and PR- (well I was actually slightly Pr+, but is was less than 10% of cells so they said clinically this is negative).
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kathleen1966 - I honestly don't know about the effect on ER-. I am trying to find the study my bil sent me, I thought I saved it. But it seems logical that it would make more of a difference in ER+ since its a hormone thing. And also, I'm guessing that there are plenty of studies saying that it DOESN'T make a difference at all or that they just don't know enough about it yet! I'm sorry if I made you worry about your periods returning.
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Kathleen1966,
I am also ER/PR -, HER2 +. As my oncologist explained to me, our BC is not fueled in any way by ER/PR, so it makes no different to our outcome if we are producing the hormones or not.
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Kathleen1966
I'm hormone neg and her2 + as well. To me, it stands to reason that if tamoxifen ( which decreases your estrogen levels) is not helpful to us , then our own natural hormones do us no harm.
. Estrogen doesn't cause breast cancer, it just stimulates the exsisting hormone positive cancers to grow. There are some studies that support normal estrogens are protective against actually getting a new BC ,
I think the only "negative" correlation between menses and breast cancer is that BC in premenopausal women tend to be more aggressive than in post menopausal women. I believe being under 45 years of agae is one of the factors that puts me in the higher risk category.
Bottom line, I am happy to have just a smidgen of hormone back and since the docs don't recommend tamoxifen for me I'm going to enjoy my hormones guilt free lol0 -
I agree about having the estrogen available. We still get to reap the benefit that estrogen provides for us for heart problems and appearance.
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Many, many thanks for sharing your experiences and information. I had to go back and double check my original path reports in preparation for the obgyn tomorrow. My ER was 100%/ PR 85% and of course, HER2 +, stage III, grade III, 4/18 nodes affected.
Hearing your stories, I'm surprised that my onc has never raised a hysterectomy as something to consider down the road. I thought my Zolodex shots (similar to Lupron) combined with tamox was taking care of the ER+ piece. I assume the VERY light breakthrough bleeding I've experienced is due to the fibroid I know I have. But I'll know tomorrow.
Does anyone know if fibroids are more likely to turn malignant as opposed to polyps?
Anyway, you all have given me lots to consider and prompted questions to share with my obgyn tomorrow and onc next week. Thank you
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And Saralmom, my apologies for the "lopping off body parts" comment. I realize it was insensitive to you and possibly others, and doesn't really reflect my true feelings on the matter, either.
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geminihalf - my understanding of Lupron etc. is that it functions to turn off the ovaries - and is a good option to ovary removal.
And I wasn't offended by your comment at all. I just literally had no attachment to those organs at all, they have done what I needed them to do. So it never occurred to me to keep them for any reason other than physical side effects, which I am prepared for (I think!!) if they do show themselves. My mom had a hyst. at 42 (I was 43 at mine), and she hasn't had any issues with side effects of low estrogen, so I'm hopeful.
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I asked my onc when I could consider myself "cancer-free" and he said "in 2 years" so I'm assuming that he feels if I don't recur in 2 years, I probably won't . . . which isn't to say we can't recur after that. Just that the first 2 years do seem to be the most worrisome for those of us who are HER2+.
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Hi there
Here's a quick update after seeing my (substitute) oncologist today--he was out of town.
So they are recommending an ooferectomy, since my cancer was 100% ER + and HER2 +. After they are removed they would put me on an AI. Explained that in some cases, Zolodex may not work in turning off ovaries completely (in like 15-20% of patients). Since its unlikely I would get pregnant and have kids after all this, I guess the idea is, "why not remove them?"The uterus is up to me and my gyn. I think I'm going to have the fibroids resected and see what happens.
Since I had a new doc, I took the opportunity to ask about HER2 and recurrence rates. Since I'm ER + and HER 2+, my cancer can come back at any time. If I were ER negative and HER2 +, then the 2-4 year window of it LIKELY coming back would hold true. And your comments are right, that in women 40 and younger, Zolodex and Tamox are usually very effective. I'm kind of right on the fence.
Now I'm trying to find the latest greatest ways to remove ovaries--I assume its laprascopic.Any ideas?
BTW, I went back into my old path reports and I noticed that my HER2 + grade is a "3"--does anyone know the scale and how "bad" that figure might be?
Thank you all
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I have my own thread under HER2 + and I find this thread very useful. For those who have not read my thread, my wife had a BMX on 10/14. Her final pathology report in the right breast had HER2 + ER + node negative IDC with 3 foci - 3.5 mm, 1 mm and 1 mm. The first oncologist recommends chemo (TCH with Cytoxan instead of Carboplatin), Herceptin and Arimidex. The second oncologist recommends no chemo, no herceptin and focus on Arimidex. My wife is a 52 year old Asian woman. These are two of the best oncologists in Central New Jersey. We are now going to go to a major city nationally-known cancer hospital to get a third opinion. Our first stop will be the University of Pennsylvania. My wife is leaning toward the no chemo/no herceptin focus on Arimidex. The NCCN guidelines also recommend this. For me, reoccurrence risk is a key factor in analyzing the pros and cons of this very difficult decision. What would be very useful for me for anyone who is has not been on my thread would be to describe how you are monitored for the possibility of reoccurrence - just doctor visits or full body scans, blood tests, etc. I am going to read this thread carefully all 376 posts because at least there are quite a few women who have lived for a long time with HER2 positive hanging over them. Thank you all in advance and I wish you good health.
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Dear geminihalf - I asked this question my self to the oncologists. There is no scale. There is a cutoff. Above the cutoff is positive and below the cutoff is negative. So for example, a HER2 5.0 per the FISH test which is my wife's result is not supposed to be any more dangerous than a 3.0 or some other number, The real key point is the cutoff point for positive and negative. That is my understanding from my wife's oncologists.
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I saw my oncologist today for my 3 month check up. I asked her about recurrence with Her2+ and ER+. She said that Her2 does usually recur within 2-3 years if it is going to. And when I asked about ER status she said that a very small percentage of ER+ patients recur down the road, whether or not they are Her2+. She said she focuses on Her2 and feels good when a patient does not recur in 2-3 years.
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Wheww!! Thank you Saralmom! With that thought in my noggin, I am logging off for awhile. I needed that!!
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Im three years out from chemo, i had chemo first with no herceptin, and a complete response, then I had herceptin
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Funny seeing " fightinhrd123" here just now...:) as we were..... " chemo/Herceptin/rads" sisters in 2008...............:)
I was going to post just what she did also.................. so I second Fightinhrd123
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Hello everyone,
Thanks again for all the great comments. I received in the mail the results of my estradiol test, to give us some more data prior to a final decision on ovary removal, hysterectomy, none or both.
I got the results in the mail--so haven't spoken to my doctor yet--but it looks like my estradiol level is >15 pg/ml. Which, if I'm reading correctly, would make me post menopausal. I don't know exactly what this information means in terms of my next steps, so I welcome any input.
Prior to the test, my onc said they typically let a pre-menopausal woman stay on tamoxifen for 2 years before figuring out next steps. I've only been on it about 14 months, so I think I have some time before making a decision.
If anyone cares to weigh in about what the test results means with respect to some of these surgical options--I'd welcome them. And, does this mean I can go off the zolodex injections?
Cheers--
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geminhalf my onc felt I would not get my periods back so she put me on Anastrozole from the start but tested my estadiol for about 5-6 months to be sure. On Anastrozole my levels came out >10 pg/mL. I guess that means that the Anastrozole is working AND I'm staying in menopause.
Post menopausal according to my print out is 23-130 mIU/ML
Not sure if she will have me tested again in the future.
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lago - on your printout does it say what the pre menopausal levels are?
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BlairK - wanted to weigh in for you on your question about monitoring in light of your wife's HER2+ cancer. I was dx'd in '01 with a grade 3 IDC, just over 1 cm, ER/PR/HER2+. Nodes were negative, but there was a question about vascular invasion. I was 32 at diagnosis. I had lumptectomies, 4 cycles of adriamycin/cytoxin, 6 weeks rads and was on tamoxifen for 5 years. At that time, herceptin was in clinical trials for early stage BCs and I didn't qualify b/c my tumor was too small. I was followed with mammos and breast MRIs annually, alternatiing (so every 6 mos. either a mammo or a MRI) and manual breast exams. My oncologist feels the tumor markers are unreliable and that full body scans are unnecessary. I saw my BS annually, oncologist every few months initially, then to 6 months, then to annually - still see him annually and I am 10 years out from that cancer. He has said that the first few years post-dx were the ones where he was most concerned re recurrence, but as others have said here, it can happen at any time.
All that scanning paid off in spades (although it was annoying) - in June I was dx'd with a completely new, low-grade DCIS in the other breast that was less than only 3 mm!? Found on a MRI. In discussing various options for treatment, we were told that the majority of second cancers are found at VERY early stages if you're diligent about getting your screening/checkups.
So - net/net - no recurrence after 10 years now, despite my HER2+ status, young age, no Herceptin. That said, times and treatments have changed, and it's great you're getting a 3rd opinion. I wish you guys all the very best - this is a very hard stage in the process!
Sarah
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Omaz it says:
Male 1-10 mIU/mL
Follicular 1-10 mIU/mL
Mid-cycle 7-18 mIU/mL
Luteal 1-6 mIU/mL
Post-menopausal 23-130 mIU/mL-------------------------------
and at the bottom for me it saysESTADIOL Value <10.0
Comment: Normal male: Prepubertal <10 pg/mL(Still no signs of a penis growing though!)
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post deleted because it was confusing!0
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I think my test must be in different measurements.
Estradiol <15 pg/ml
Female:
Follicular 11-165 pg/mL
Midcycle 146-526 pg/mL
Luteal 33-196 pg/mL
Postmenopausal 0-37 pg/mL
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geminihalf - I think my estrdiol was measured in pg/ml and the distribution you posted makes sense to me - thanks.
lago is your distribution for FSH perhaps?
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SAOlsenberg,
Nice to meet you - I too never had trastuzumab (dx 2001 by bx and Jan 2002 by surgery) and remain NED.
Even though I never had trastuzumab (and apparently didn't need it), I feel it is extremely unfortunate that HER2 positives are routinely treated with chemotherapy and Herceptin. It is another example of medical failure to THINK, and massive overtreatment. The system is biased toward the use of chemotherapy in that because chemotherapy has been the standard treatment, despite the lousy success rate of chemotherapy it continues to be required in order to get trastuzumab.
This results in skewed information about the question that is the focus of this thread. As long as we still don't know which group(s) of HER2 positive bc would benefit from trastuzumab used ALONE, we cannot know how much the addition of chemotherapy to trastuzumab increases or decreases recurrence.
With earlier diagnosis being more common now, there are fewer women diagnosed with later stage bc. Early stage bc is the group that gets the least benefit from chemotherapy.
As breast cancer patients we do NOT need the extra torture, the extra expense, the extra hassle of going through chemotherapy, the extra chemotherapy support drugs that we get because of the chemotherapy, or the long-term risks for things like leukemia and cardiac disease due to the added chemotherapy. Yet oncologists (who assumably do not generally go through treatment themselves) continue to fail to scientifically address this question.
I'm no genius, but I CAN think.
AlaskaAngel
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