Concern about menstrual status and recurrence

comingtoterms

Hello everyone,

For some time I have been interested in the notion of how menstrual status affects recurrence. I know I'm not the only one out there in this situation and wonder what other's take is on it: 

My BC was highly ER/PR+ - I did  A/C/T chemo and approx. 1-1/2 years of Tamoxifen with a neglibly brief stint on Fareston. I went into approx. 9 months of chemopause and then regained menstrual function. I continued to menstruate during Tamoxifen and the SEs of a highly thickened endometrial stripe, heavy bleeding, multiple biopsies etc., led me to stop Tamoxifen. Same with Fareston.

Fast forward: I am currently not doing anything to prevent recurrence. I still am menstruating, albeit irregularly, at the age of 52. Obviously, my body LOVES estrogen! I wonder if there are others who would like to talk through this situation and share information. My Onc wants me back on Fareston. My GYN wants an ooph. I think an ooph is ridiculous at my age. What are you doing and are you concerned about a heightened risk of recurrence, as well? Thank you! Tammy

Anonymous

Hi Comingtoterms, wow !! chemo and Tamox did not kill your menstrual cycles, you are one tough lady !  Lol

If it were me, I would definitely do everything i can to slow down the estrogen production your body likes so much and enhance its metabolism by adopting some of the measures mentioned on the new thread started by Natkat.

I also considered oophorectomy when having to undergo biopsy after biopsy while on Tamox, but after much research i decided against it, quit Tamox and adopted many of the measures mentioned on Natkat's thread which are making me feel much safer overall.

Am crossing fingers that you become menopausal very very soon, hugs 

leggo

Personally, I'd rather be put into menopause surgically, than chemically. It's a very simple surgery, done laproscopically, with very quick recovery time. I don't think an ooph is ridiculous at your age. Mine was done at 32. If I where you, I'd do what I had to do to give me the best chance, and having the ooph is a good start. JMO.

Husband11

My wife is on tamoxifen and taking Lupron shots to suppress her ovaries.  She isn't menstruating, but periodic tests of her estrogen, LH and fsh show she is bouncing around in between menopause and not.  Estrogen goes below the readable threshold at times, and at other times jumps up to levels like 500-800.   The flucutating hormone levels are causing her problems, so hopefully this stabilizes it.  I don't think there is any clear cut evidence of the impact on recurrance.  Tamoxifen plus natural estrogen seems to do just as well as menopause plus AI's for overall survival.   Bev simply doesn't want an oophorectomy.

Anonymous

Comingtoterms, check out this study where an oophorectomy would have no benefit whatsoever if you've already had systemic treatment which makes me wonder why on earth...sure glad I did not go through with it...

"Finally, allocation to ovarian ablation or suppression (8000 women) also significantly reduces breast cancer mortality, but appears to do so only in the absence of other systemic treatments" 

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)66544-0/abstract

peggy_j

My MO said an oomph would reduce my risk of recurrence by 40%. (she also said if I were post-meno my risk of recurrence would be less). If your periods are irregular maybe you'll be in meno soon???

orange1

If using Lupron to suppress cycle please be aware that it wears off faster in younger people.  Timothy - that is probably why your wife does not stay suppressed.  Very risky to have those estrogen spikes imo (caused by flare when the next shot is given after the previous shot wore off...lupron is a GNRH agonist - it takes a couple weeks for negative feedback to kick in to suppress ovarian function, meanwhile if given to someone who is not suppressed, it causes a surge in estrogen production.  Therefore its very important to dose frequently enough so that there is continual suppression - so a flare won't occur when the next shot is given.  A solution... have the shots more often.  If your goal is to completely suppress the menstral cycle, it is impossible to overdose that drug  - there will be no increased side effects (except those caused by complete supporession of ovarian function such as hot flashes,).  

Lupron was originally developed to treat prostate cancer (for old men).  When later developed to treat precocious puberty (children), the dose had to be significantly increased.  kids still get monthly shots versus - the 4 x per year shots available to men being treated for prostate cancer.  

orange1

Me: I went into chemopause and stayed there, but since I don't want to take an AI (I already miss my estrogen too much, I don't want to decrease it further), I stay on tamox despite thickened lining, and 2 d&c's for polyps (after the first biopsy, I wont allow another - ouch! - I just go get the d&c.  Thanks to anethesia - its painless. Its really not that big a deal.  I take one day of work off for the procedure and thats it.  Ibuprofen takes care of the mild cramping that goes away within a day.

I read that risk is decreased for post-menopausal.  If I were still cycling, I would consider the ooph or at least stay on tamox or fareston.

Momine

I had an ooph. I was 48. It did not seem at all ridiculous to me, more like a no-brainer. Cut off the supply to the sucker. I took this route because I wanted to avoid the tamox for various reasons.

comingtoterms

Thank you all for the great info. One new thing: the Lupron shoots need to be administered more frequently than we may have realized. I love this site. I LOVE learning. Do any of you know about research done in this regard?

purple32

QUESTION

I dont mean to veer from the topic, but I see this so often I must ask- how do you ladues know what percentage ER PR + you are ? What test is done for that ?

THX

Good Luck to you comingtoterms

Anonymous

Peggy, I would take the study I cited to your MO, seriously

Purple, your ER and PR percentages can be found on your path report 

My onco suggested Lupron shots, after looking up the SEs, I said no thanks 

Anonymous

Purple, check your path report, it definitely will specify your tumour's ER PR HER scores. Both of my ER & PR were over 95%, so considered high. Don't know really, I would personally think that anything above 50% is higher and below 50% is lower...my best guesstimate....

Hang in there, hugs 

purple32

THX Ruby., I will check it again...once I find it !

peggy_j

Ruby, thanks for your concern. My MO didn't recommend it for me. In fact, I was the one who asked after hearing a BRCA patient mention it. (Also, I didn't have chemo). BTW, I noticed that the study cites statistics on morality rates, which makes sense cuz they're looking at chemo. My docs usually cite risk of recurrence for me (which can include a recurrence that's successfully treated w/ no impact to mortality).  Just an FYI that our numbers might not be measuring the same thing.

Anonymous

Peggy, I was not clear whether you had had chemo or not.  If you didn't, then what I cited obviously does not apply in your case.  However, Comingtoterms did have chemo.  In cases of BRCA pos, ooph for sure

comingtoterms

Peggy, do you know why your Onc said your risk would be lower if you were post-menopausal? Also, have you noticed that there are constant references to the magic age of 50 in most research? I am confused as to why this is. Many women in their 50s are still menstruating. Which brings me back to why I started this thread: what is the significance of menstruating into your 50s when typical triggers ie. A/C/T chemo have not pushed you into menopause? This is my quest: What does it mean?! Maybe I need to start an informal poll! Thank you thank you thank you!!  Tammy

peggy_j

Tammy, my MO said I currently have about a 15% absolute risk of recurrence. She said it I were post-meno, it would be about 10%, so that's a huge difference for me. It's the estrogen exposure because I'm highly ER+ >95%. Yeah, I've seen the age 50 referenced in some studies. i.e. it seems to be a magic age when deciding on chemo, in part because younger women have a longer life expectancy, ergo they get more "benefit" from chemo than, say, a BC patient who is 80. But all my docs say these ages are just rough guidelines; our bodies are not like switches that turn on and off, but changes happen over time. (another example, the risk of clots on tamox increases the longer you take it and also increases when a woman is over 50, but it's a gradual increase over time/age). Several of my docs have said that 51 is the average age for meno and there is a huge variance, which means many women are still having their periods in their 50s. For BC Tx, it seems like meno status matters more than your age. At Timothy said, you can take tests to get a sense of how close you are to meno (things don't happen suddenly).  FWIW, I know a few non-BC friends who had ovarian cysts and opted for removal. I don't think pre-emptive removal necessarily makes sense but ... it you did have an oomph you'd never have to worry about those potential issues. 

 All your questions seem valid for your MO.  Maybe worth talking to him or her (and/or get a second opinion) to get answers to your specific situation?  

purple32

RE:  ER PR %

Me again!
I found my path report. I hope someone can help me, but I really dont think ,my % is listed !  It looks to me more like a guide  'explaining' percentages or something. I'm stumped.

I did ask my MO at the appt. after the surgery and she did say " It doesnt matter" when I asked what percentage it was !

Anyhow, It reads :

"The tumor cells stain for estrogen receptor protein"    ( OK  ER +)
" """''''''''''''''''''''''''''''''''''''''' progesterone ................"     ( OK  PR +)

Later it states:

"NOTE:
Estrogen and progesterone receptor quantitation.  The percent of immunoreactive nuclei in the tumor cells is assessed visually and reported as follows:
-The tumor cells stain ( >10% of nuclei stained)

-Some tumor cells stain ( 1 to <10% of nuclei stained)

-Rare tumor cells stain ( <1% of nuclei stained)
-The tumor cells do not stain (0% of nuclei stain) "

Generally speaking, I'm very good at reading med. records, but I really dont see where this shows the quantification of my ER PR status. Does anyone else have  a path report that reads like this ?!

Thanks for any clarification.

I do appreciate you taking a  look!

Anonymous

Comingtoterms,

'what is the significance of menstruating into your 50s when typical triggers ie. A/C/T chemo have not pushed you into menopause?'

I'm not a doctor but I believe it simply means that chemo was not successful in damaging your ovaries - that's why I said you're one tuff lady  

The medical terms is: Chemotherapy-Induced Ovarian Damage or ovarian failure which can be dramatic in younger women who want children

Anonymous

Purple, I'm sorry you are not getting the answers you need from your path report and doctor.  I love it when they say something like 'it doesn't matter' meaning THEY DON'T KNOW !!!

Ok, sorry I was not more specific, I swear I saw it on my biopsy path report which I'm looking for right now...I don't see it on my lumpectomy path report... back soon

Anonymous

Ok, here it is:

Dx: Left breast (core biopsy) 

It's divided into 4 parts, one of which is Immunohistochemistry Report

. Estrogen: Positive (95%, bright in infiltrating tumour cells nuclei)

. Progesterone: Positive (95%, "   "   "   ")

. HER-2/Neu: Negative (Score 1, less 10% incomplete, faint and non-uniform staining in tumour cells cytoplasmic membrane)

and then it goes on about the antibody clines used 

Do you have your biopsy path report ?  If not, you should ask for copy 

purple32

Nope, I don't, Ruby .

Yes, I will be requesting a copy for sure.

Thanks once again.

Anonymous

You are most welcome Purple, real happy to help if I can 

curveball

@purple32, even when you find your path reports from biopsy & surgery, they may not have the percentages on them--mine don't. My Oncotype test results had some addtional information--not percentages but a score that tells me I'm strongly ER+ but only weakly PR+. You are hormone positive, HER2 negative and have clear nodes, so the Oncotype test may be helpful to you in making treatment decisions.

purple32

Thx curveball, but my BS refused to order oncotype because of my early status. She said she will only order for those she might consider as a chemo candidate, and that was not me. It was all I could do to later get her to do the ki 67 tests because I was skipping rads..  I will call MON and see if my biopsy results have the percentages. If not, I guess I may never know.

We'll see.

THX

curveball

@purple32, It wasn't clear to me from what you wrote whether your BS told you you weren't a chemo candidate, or whether you told her. You've posted elsewhere about the health issues that are complicating your treatment decisions. Since you've ruled out rads, tamoxifen and AI's due to these other factors, IMO chemo deserves a serious look, and the Oncotype will give you some idea of whether or not it is likely to be helpful for you. If you will be consulting an oncologist about the possibility of including chemo in your treatment plan, maybe s/he will be willing to order the Oncotype test for you. Or have you already ruled out chemo too, due to your other health problems?

purple32

Hi curveball

Thx for your post.

My BS specifically said that chemo was not in the picture for me at all. It was not my decision.  I watched what my husband went through  with 12 mos of 5FU , going into it very healthy and strong, and I was glad to hear I was not a candidate because  there is no way I could function thru that with these lungs. Should I ever have to do chemo, I feel quite sure it will really knock me out of the game so to speak. But , to be clear , it was definitely the DR who said chemo was not necessary at all and was a no go for me . She  said I was a luminal a type cancer.

Husband11

Just to clarify my wife's experience, she is not experiencing estrogen flares on Lupron.  She is in chemopause, and is having her estrogen levels monitered.  It was during chemopause that occassionally her estrogen levels would spike.  Her oncologist cannot comment on the frequency of this occuring in other patients, as they typically do not moniter estrogen levels.  They would assume, that since she hasn't had a period in 3 years, that she is in menopause.  However, the monitering has shown these occassional estrogen spikes.  If it were not for the monitering, they would have put her on an AI.

 Because of Bev's concern about the estrogen spikes, she has received permission to go on Lupron.  She has just started the Lupron, and monitering of estrogen levels will continue.  She is on the Lupron Depot formulation, which is designed for administering at 3 month intervals.

comingtoterms

Purple, my path report gave specifics about er/pr+ status - ie. how strongly er/pr+ I am. I am always surprised how different path reports are. For instance, mine didn't have a ki 67 status on it. Also, despite having mullti-focal bc, only 1 of my tumors was tested for er/pr, her2 status. Amazing. It is important for you to know how strongly er/pr + you are. I would get in touch w/ your Onc pronto and ask them to clarify this with you. Ruby, thanks for the info. It is exactly what has been puzzling me. Women two decades younger than me lose their fertility. This is why I am so interested in knowing whether recurrence rates are affected by menstruation and whether there are others out there like me! I think it is valuable information for research. Thanks, all! Let's keep talking! Tammy

Anonymous

Hi Comingtoterms, I know that pregnancy is not in the cards for you...but a lot of women become pregnant (estrogen spike) after undergoing treatment and it is not a risk factor for recurrence. The challenge doing research on google is finding the right terms, not always easy.  But i found this:

"Approximately 50% of women retain or resume ovarian function and continue to have regular menstrual cycles

Breast carcinoma is, for the most part, hormone dependent, and pregnancy certainly is a condition in which hormone levels are at an all-time high. In the past, it was recommended that women not become pregnant after treatment for breast carcinoma.7 However, it has been shown that there is no increase in risk of death due to breast carcinoma in women who are pregnant at the time of diagnosis or who become pregnant after treatment of breast carcinoma"

http://onlinelibrary.wiley.com/doi/10.1002/cncr.11929/full

According to this study http://jco.ascopubs.org/content/24/7/1045.full.pdf, there is a survival benefit for amenorrhea post treatment in some studies, but not in others....these are not recent and I agree there should definitely be more research re this issue.  I read also that certain chemo drugs are more apt than others to damage ovarian function.

9. Pagani O, O'Neill A, Castiglione M, et al:
Prognostic impact of amenorrhea after adjuvant chemotherapy in premenopausal breast cancer patients with axillary node involvement: Results of the International Breast Cancer Study Group (IBCSG) rial VI. Eur J Cancer 34:632-640, 1998

10. Goldhirsch A, Gelber RD, Castiglione M: The magnitude of endocrine effects of adjuvant chemotherapy for premenopausal breast cancer patients: the International Breast Cancer Study Group. Ann oncol 1:183-188, 1990

11. Fisher B, Sherman B, Rockette H, et al: L-Phenylalanine mustard (L-PAM) in the management of premenopausal patients with primary breast cancer: Lack of association of disease-free
survival with depression of ovarian function. National Surgical Adjuvant Project for Breast and
Bowel Cancers. Cancer 44:847-857, 1979

12. Parulekar W, Trudear ME, Shepheard L, et al: Incidence and prognostic impact of amenorrhea
during adjuvant therapy in high risk premenopausal breast cancer patients: Analysis of a National Cancer Institute of Canada Clinical Trials Group (NCIC CTG) phase III study. Proc Am Soc Clin Oncol 20:25A, 2001 (abstr 97)

13. Bonadonna G, Valagussa P, Moliterni A, et al:adjuvant cyclophosphamide, methotrexate, and fluorouracil in node positive breast cancer: Twenty year results. N Engl J Med 332:901-906, 1995

Hope this helps somehow