Taking Provera with progesterone receptors ++ 100%

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atanea
atanea Member Posts: 58
edited October 2015 in Hormonal Therapy - Before, During, and After

Hi everyone,

I'm on Tamoxifen for more than 2 years, and stopped Lupron/Zoladex some months ago (I had monthly shots for 2 years, they come with terrible side effects). My period haven't return...yet. I'm also taking chemo pills for another disease I had after breast cancer (leukemia).

I always do pelvic US to check how is everything. Besides some uterine myomas and a possible very small ovarian cyst everything was fine. My endometrium was also always thin (2mm). But, some months after I stopped Lupron shots I did a US (1 month ago) and was diagnosed with cystic hyperplasia, possible caused by Tamoxifen, my myomas were also bigger and my endometrium was 5 mm. I also had some bleeding after the US (is this even normal?), for 2 days. That was 1 month ago.

Some days ago I started having some pelvic pain and pressure just like when you are on your period (but I'm not). I went to the doctor and he did a US and my endometrium is now 8 mm (3 mm bigger less than a month before). He advised me to take Provera 3 x day for only 7 days, he thinks it will "clean" the endometrium and it will stop my pelvic pain. I told him about my breast cancer, with 100% positive receptors for progesterone. He says it's only a week and it will not do any harm, but I'm not convinced...I read the leaflet and it says it's not for women with breast cancer! Besides that, if this is caused by Tamoxifen, it will happen again. If I have to stop Tamoxifen I don't know what else can I take. Period may return so I guess AI it's not good idea, and I'm really not in the mood to take Lupron again.

Don't know what to do, and this pelvic pain/pressure doesn't stop. Should i take it? Anyone having this dilemmas?

Thanks

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2015

    Atanea- Good to see you back from your luekemia diagnosis but sorry you're having Tamoxifen related problems.

    Myomas are usually referred to as fibroids here in the US. Mine haven't grown much on Tamoxifen but I keep growing polyps that need to be removed. Mine lining gets thick & the cramping starts. The GYN suggested a progesterone secreting IUD at one point. He said very little of the progesterone would be absorbed systemically. He thought it would keep the lining thin & hopefully stop polyp formation. My MO didn't like the idea. So, I get D&C/polypectomies every so often(6 months-1year). Hopefully so one else will come along with more insight.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2015

    I did not personally experience these problems while on tamoxifen but know of someone who did have dilitation & curettage for bleeding and eventually hysterectomy. She was close to menopausal age.

    Prior to surgical procedures, it makes sense to try a medical approach however the IUD, although locally acting, would make me hesitate due to the length of therapy.

    If both a gynecologist and oncologist agree that one week of oral progesterone causes minimal risk of cancer growth enhancement, I would seriously consider doing it in order to get some relief! After all, you don't get complete estrogen blockage even from aromatase inhibitors and any rogue cells that are attempting to get established might be hormone receptor negative.

    Since you already fought leukemia, another malignancy is certainly not something to trifle with but it sounds like you need to treat the current difficulty and take care of any future effects once they arise, which may never happen...

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  • atanea
    atanea Member Posts: 58
    edited July 2015

    Hi,

    Thanks for the replies.

    I can't get an appointment with my ONC for at least 1 month, I'm trying to get in touch by other ways, but it's holidays time, so I'm not sure I will even get any reply.

    The GYN (not my usual GYN, I'm out of my residential area) that want's me on oral Provera told me that if that doesn't work I will probably have to do a hysteroscopy and curettage in the following months. I forgot to ask him if those procedures include a biopsy. I hope so. How can they even be sure of what kind of hyperplasia I have without having a biopsy? I'm somewhat afraid of the connection between Tamoxifen and endometrium cancer (I have family history of endometrium cancer), I already had leukemia that might have been related with previous breast cancer treatments (radiation, hormonal treatment, who knows). I'm ok now, but I would so much prefer not to have a third cancer.

    As strange as this sound I would prefer to have hysteroscopy and curettage than taking Provera, 5 mg, even for just 7 days. But I'm also doing treatment for leukemia (chemo pills), and my WBC counts are not exactly normal, there is always a risk of infection in any procedure, I'm not sure how much aggressive is curettage.

    Maybe I'm just freaking out (but reading your reply coraleliz, maybe I'm not?), but I prefer to have pelvic pain than having metastatic breast cancer one of this days. I don't want to help cancer. What if the rogue cells that are attempting to get established are NOT hormone receptor negative? It just takes one little cell. I'm aware that it's not possible to completely block estrogen or progesterone, and the GYN told me I shouldn't worry because If my period returns I will have a lot of progesterone also, but the question is, how much is a lot? Would taking 15 mg of Provera for 7 days create serum levels of progesterone similar to those woman have during the period? If yes, I would be ok with that, but what if those levels are much higher? That's what I'm afraid...



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  • coraleliz
    coraleliz Member Posts: 1,523
    edited July 2015

    To confuse matters, it seems that progesterone is being looked at to "fight" BC.

    https://community.breastcancer.org/forum/73/topic/...

    For me, I have 1 year & 3 months to go with the tamoxifen. I plan on stopping at 5yr. I sometimes get a biopsy done in the doctors office. I find it tolerable. The polyps are thought to be causing my bleeding. My other option would be to have a hysterectomy. I don't want that major of a surgery. When I need a hysteroscopy/D&C/polypectomy, i'm fine the next day. I think I'll need this done 2 more times before I finish the tamox. Just a guess really. My pelvic pain goes away after I have this surgery.

    It's possible that my lining or polyps will come back cancerous or precancerous & I will need the hysterectomy. Uterine cancer is considered very treatable(with a hysterectomy).

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2015

    Does your hospital have a clinical pharmacist (preferably an oncology specialist) who could look up and compare progesterone blood levels among women under these various conditions? As drug experts, they are trained to trnaslate research findings into practical application, given different dosage form possibilities/time intervals, etc.

    If it is an academic medical center, they could assign this as a student project. In my former career we were always being called upon to investigate concerns like this. Doesn't hurt to ask!

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  • atanea
    atanea Member Posts: 58
    edited September 2015

    Hi again,

    A not so happy update on this. Two different onc. strongly advised me against taking Provera, so I decided not to take it. Just 2 weeks after, my period came, 5 days, normal, with normal pelvic pain, did a US 1 month after, and my lining was not thick anymore (only 4 mm) but still somewhat heterogeneous. So, I was so happy. My period didn't came anymore. Lately I started having light pelvic pain again, so, last week I did another US, and guess what, my lining is again thick, and I have now a big septated (thin) cyst with vascularity with 60 mm!, that came from nowhere and didn't exist last month. I'm just about to have a heart attack..

    They are not even sure if it's really a cyst or another cancer. I talked to a doc today that told me that Tamoxifen may cause ovarian cysts (while others tell me it doesn't) ...I hope he is right and it's not cancer..I'm doing an MRI next days..
    Talked to many docs, and they say opposite things, my onc. it's firmly against taking my ovaries out, he believes the benefits rarely outweigh the risks, the gyn onc. says I should take it ALL out now, because they have to do some surgery anyway (to take the cyst) and I came from a family (but not my direct family) with a high risk (no ovarian cancer, but breast cancer, endometrium cancer, melanome, kidney cancer and colon cancer ) and I also have fibroids, some with 30mm and 40mm, a small dermoid cyst and now this big new cyst, that they are not sure what the hell is...don't know what to do...

    I'm really not into oophorectomy or even hysteroscopy...I just spend a lot of days reading about oophorectomy, terrible side effects like heart attack, bone density lost, even dementia and cognitive problems, and sexual problems...I'm still young... I took Zoladex/Lupron shots for 2 years, it was bad, dealing with those side effects for the rest of my life, I just don't know if I can take it...what kind of life will I have? By the other hand, in two years, I had both breast cancer and leukemia, what if I get ovarian cancer also? It's so much worse than breast cancer, or even my leukemia. Terrible choices...I just wish I gather the strength I need to get to this...again...for the third time...even if it's not cancer..


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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2015

    Atanea,

    Sorry you're dealing with this at this point in your life. But are you finished with your "reproductive career "? Meaning, finished having babies? If so, i would concur with the GYN onc to have everything out since you are high risk for developing malignancies. I know the side effects are daunting but just imagine being free from worries like these rather than have them for the next ten years? This is just MHO, having gone through the same predicament. I really procrastinated wiyh the hysterectomy/oophorectomy thing for two years until I had enough. I am now two weeks post -op. And my multiloculated, thick-walled, color flow positive ovarian mass is benign. No regrets. Now getting ready to face the new challenge that is surgical menopause

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  • atanea
    atanea Member Posts: 58
    edited September 2015

    Hi bcbarbie10,

    Thanks. That's good news (benign). I understand your decision, a multiloculated, thick-walled, color flow positive ovarian mass doesn't sound good.

    No, I don't have kids yet, I did fertility preservation after breast cancer (another hard decision), but that was prior to leukemia, cancer didn't gave me time to think or act about that. I'm not sure I will have kids, but I'm not ready to take that decision now (unless there isn't any other choice.).

    I did ask another gyn onc opinion (one of the best) he also thinks I should take it all, but he also says there isn't any reason to do it right now, he thinks I should wait until I'm more close to menopause or if there is any kind of evidences of ovarian malignancy. I have already decided to do the radical surgery, but I will delay it as much as I can, maybe 5 years from now, or after having kids, or after Tamoxifen. That decision isn't final, I may change my mind if this cyst continues to grow, changes appearance or don't disappear, or if I get too stressed out about this, but I will first opt for a simpler surgery, if it comes back, or if I keep getting these problems, I may change my mind and just take it all.

    I see your point. The problem is, I will never be free of worries anyway, I can have cancer again, a third time, at any other site, I can have a breast cancer recurrence, I can have breast mets, I can have leukemia mets, I can have a leukemia recurrence. I will never be safe again. We never are anyway, I was 100% healthy until breast cancer arrives, I was 35, one year later I had leukemia. Accepting the 'never safe again' is one of the hardest things I will have to do (I'm still learning how).

    Meanwhile, my cyst doesn't look malignant, I did a MRI, it says its completely benign, a pure cyst. Of course, we can't be 100% sure, but I also have 'cysts' all over my breast (they can't also be 100% sure until a biopsy is done), I also found a hard mass at my jaw, the biopsy would be terrible, its very close to the nerve (it could damage the nerve, and I could have some pain/numbness for the rest of my life). I freaked out about it for 2 months, first I thought it was mets, then CT results came and it's benign, I wasn't so sure, then I found an older X-Ray (10 y before it was already there, the same size), can't we be 100% sure it's not mets/cancer? No...my breast cancer was slow growth, maybe it was a dormant met, but it's unlikely, so I needed to choose. I opt for keeping it watched. I don't think too much about it anymore (but I will keep it watched, just in case). I could opt for a PET-Scan, I also chose not to do it, it's a lot of radiation, I already had leukemia after breast cancer treatments (no chemo) so radiation is a no-no to me. Now, this cysts (I have another one, smaller, at the other ovary), for a week, it was hell, maybe I was going to dye in the next month, something that grows 6cm like that, if it was ovarian cancer, I wouldn't probably survive it. But if I'm going to do a surgery for every cyst I have in my body...my life will be a living hell also.

    That said, I usually prefer a more aggressive approach, but I'm just tired, and I also need to think about risks. I'm doing chemo pills for leukemia, my immune system is not in his best shape, any surgery, small or bigger, is a risk. I need to think if this cyst justifies taking that risk. For now, I don't think so. I'm not even sure if it isn't a cyst caused by Tamoxifen. I'm almost sure it is. If that's the case, yes, it may not disappear, others may come, if this continues, yes I will review my decision.

    Of course, if it's ovarian cancer I will swallow my own words, and I will probably not be here to keep an update on this.

    I think your decision was also a brave one. Keep us updated! Just to give you some positive thoughts...I have an aunt that had BC (she was +- 33y ), then she had endometrium cancer, then she took it all off. She is 84 now. She never had bigger issues after the surgery. She broke her hip, when she was 83, but she fully recovered! She doesn't have any heart problems, neither mental problems. I have a neighbor with 85, she did it when she was in her thirties, She is one of the healthiest older persons I know.


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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited October 2015

    @Atanea,


    I see you have a lot to think about. The decision not to do anything radical at this point is valid. I'm so sorry you have a lot of co-morbids to think about. And you're right, taking it all out doesn't guarantee that we would be free from cancer, primary or mets. The only other thing I can say is when my endometrial lining continually thickened, both my gyn and i agreed not to take the risk with Provera.
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