Ovarian Cancer after Breast Cancer But Not BRCA+

Lolita

Hello sisters,

It has been over a year since I have visited this forum.  I had early stage breast cancer in 2008, when I was 42, a bilateral mastectomy and took tamoxifen for five years with no problems.  I went off tamoxifen in January 2013.  Then, in December 2013, I was diagnosed with Stage IIIc+++ ovarian cancer.  I had two genetic tests in 2008 and late 2014.  Both showed I was BRCA negative; however, I have a variant of unknown significance in the PTEN gene.

I was just wondering if anyone else had a similar experience?  I'm taking tamoxifen again since there is no more risk of uterine cancer after my "maximum debulking" surgery last year.  I wonder if the tamoxifen held the ovarian cancer off for those five years, or if going off the tamoxifen when I was still pre-menopausal caused a flood of estrogen positive hormones that ignited the ovarian cancer.  I wonder if the genetic variant plays any type of role, and if there are any other women with a variant in the Pten gene who have had both breast cancer and ovarian cancer.

Thank you,

Lolita

 

 

lekker

Lolita - I found a research study that might be of interest to you. http://www.lerner.ccf.org/gmi/research/pten.php

If that study isn't relevant, maybe your genetic counselor can point you in the right direction. I'm sorry you're dealing with another Cancer. We are in the early days of understanding our genetic code but I hope you get some answers soon.

besa

I was also going to suggest the PTEN study that lekker posted above (Dr. Charis Eng's group). If your PTEN VUS is in the promoter region of the PTEN gene know that this is a "bidirectional" promoter which also should control the KLLN gene on the antisense DNA strand. The same people at Cleveland Clinic are also studying the KLLN gene.

http://www.ncbi.nlm.nih.gov/pubmed/23446638

farmerlucy

Lolita - No answers but just wanted to tell you how sobering your new diagnosis is and how sorry I am about it

Lolita

Thank you for the information about the Cleveland Clinic. My genetic counselor did indeed refer me there, and I recently sent a bunch of blood over. Farmerlucy, thank you also for the concern about my diagnosis. Happily, I have been ned for eight months. But, you are right; it is a sobering diagnosis, and I wish I had followed my gut instinct to remove my ovaries when I had the breast cancer initially. It was so small (.4 m) and I was negative for BRCA, so I listened to the professionals.

Cmo65

Lolita:

I just found out today that I was BRCA negative, but that my PTEN also came back unknown significance.  I have not spoken with my doctor yet, but after reading your post, I "feel" like I'm leaning toward cutting out all my junk.  I was told getting rid of everything only had a 4% recurrence rate.  It is all so confusing.

I wish you well in your treatment.

Christine

bethq

Desperate here. I had stage I breast cancer with bilat. mastectomy and tamoxifen one year ago. I started to have hot flashes recently so wanted to have my hormone levels checked to see if I needed to switch to an aromatase inhibitor. I was also very anxious. Come to find out my estradiol is through the roof at 1600 (supposed to be under 20). Here is the problem....I asked my MO about this and his reply was that he was going to email an endocrinologist at Hopkins to see. I have not heard back! So I am letting my internal med NP handle my cancer at this point....she ordered an ultrasound of my ovaries...sure enough there is a cyst on the left and a complex solid and cystic mass on the right approaching 5 cm with moderate amt of fluid in the adnexal area. My genetic testing was positive for the ATM mutation, which, of course has little known about it but is not really linked to ovarian cancer (some research links it others does not). Sorry I am rambling. I go for an MRI tomorrow, again by order of my regular NP God bless her. I read that sometimes Tamoxifen can cause a paradoxical rise in estrogen....but my question is should I still be taking it ? I mean I am walking around with sky high levels, racing heart, anxiety, etc. I feel like my MO dropped me. Also, I know that in post-menopausal women 50% of masses are cancer....but how do I even know if I was approaching menopause...I guess not with the estradiol levels so high. I have not had periods due to hysterectomy.

Also on a funny note, the radiologist insisted on a pregnancy test because the mass looked so much like an ectopic pregnancy!

atanea

It has been a while bethq, but can you give an update on this?

Hope everything is going well Lolita. What kind of ovarian cancer did you have? Did you have any signs? How was it diagnosed? Any family cases?

I was taking Tamoxifen and Zoladex/Lupron shots, stopped those shots 6 months ago, my uterus lining started getting thick, period came once, tested estradiol levels (where 200) 2 months ago, today they are 120...that doesn't seem low to me, so I'm premenopause now.

Meanwhile, all of the sudden a big 6 cm septated vascular cyst came from nowhere in just a month..waiting for the MRI..

I have a strong gut feeling that the indirect/direct effect of Tamoxifen not being opposed by Zoladex/Lupron at ovarian level is causing this cysts. Mine body seems to have went crazy when I stopped the shots, and I don't have anymore any kind of side effects with just Tamoxifen (before, when I has also taking the shots I had instable mood, bone pain, hot flashes, depression).

My BRCA1/2 is neg. but I have family high risk for breast-ovarian cancer. Although I don't have any case of cancer in my direct family, and no ovarian cancer anywhere in my family, I have uncles and cousins with other types of cancer, like breast cancer, endometrium cancer, melanoma, kidney cancer, and some colon cancer. I also had leukemia after breast cancer.

Now, some gyn suggested me oophorectomy+hysterectomy but I just can't make a decision. I'm very afraid of ovarian cancer, but I don't have kids yet, and it really scares me the oophorectomy side effects, specially long term, and I'm still very far away from natural menopause. Just can't make my mind.. I'm also scare of doing a big surgery like that now, I still have to take some chemo pills because of leukemia, at least for another year and I'm afraid of getting an infection or something like that in the surgery.

Just don't know what to do anymore..

Meow13

Help we are high anxiety here, I just found out my husband's step sister has gynecological cancer in groin and neck tumor in lymph nodes. She was diagnosed with breast cancer 2 years after me in 2013. She had 1 cm Idc er+ tumor. She had lumpectomy, radiation and tamoxifen. I don't know if she has brca1 but we are terrified. All we know is she has to do chemo surgery then chemo again. Can anyone tell us how bad this sounds? Is she looking at stage 4 because of neck thing? I can't sleep.

farmerlucy

oh Meow - that is terrible news. I'm so sorry.

atanea

Hi Meow13, sorry for the bad news.

The neck tumor in lymph nodes is the same of the gynecological cancer?

Meow13

Yes they both seem to be the new primary gynecological cancer. I think they are jumping into chemo, not sure what kind, to zap the tumors down before surgery. She is 5 years younger than me so she is only 52. I wonder if the tamoxifen she took caused this. I'm going to send her John Smith's post about getting detailed testing on the tumors. I already don't like the onco he said no to cold caps. She is worried about losing her hair. She is in shock as we all are she is not googling she doesn't want to dwell on how grave her situation may be. I would like to see her get into a trial may she would qualify given the results of testing.

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Meow13

Update only the groin lymph nodes were biopsied and they can't determine the cancer type other than GYN. Lymph node in neck show up on MRI no biopsy was done.

atanea

Hi

There is consensus about Tamoxifen increasing a little bit the risk for uterine/endometrium cancer (not for ovarian or other type of cancers, but I have my own (not proved) doubts about that..), but that doesn't seem to be the type of cancer she has ? anyway it's not going to help thinking much about Tamoxifen right now, if she hadn't take it she would have a higher risk of breast cancer recurrence/mets, that risk typically is much higher than having uterine/endometrium cancer Tamoxifen induced.

So, if they say that at the groin it's gyn cancer that means they are completely sure it's not a breast cancer recurrence, or lymphoma? The only information they have is that it is gyn cancer? Well, to came to that conclusion I believe they must have more information. They only found it at the groin? But, is that the primary site? Didn't she take an US and pelvic and abdominal MRI? Didn't she had any gyn symptoms and gyn changes before?

Why they didn't go for the neck lymph node biopsy? Where they afraid of spreading cancer cells or something like that? But then, how can they know if it's a met or not?

I'm probably not helping much with these questions, I think that when things go wrong there are two ways, or you sit and try to calm down and trust 100% docs and wait for the best, or you search for more information (google may not be the best source) and study and discuss all options with docs, but to do that, more information is needed, and comprehensively, she is not in the mood to pursuit that way, maybe helping her with that without talking to her too much about it, it's the best idea.

About cold caps and hair stuff, cold caps don't work for everyone and may be very discomfortable, maybe it's not available? Or the onc. thinks she will be weak with all the chemo stuff and having to deal with cold caps stuff may be difficult for her? Maybe he should talk with her about that, what the reason's he gave for denying cold caps?

I did chemo for leukemia (but not for breast cancer), all my hair was going to went way, so I did cut it all before it fall, no cold caps was offered, it was not even available, it didn't cause me any concern to be honest, I was too afraid of dying to care about hair stuff, hair will grow again, and actually I did like to see myself with short hair, most woman look younger with short hair. In fact, I have an older cousin that also had to do chemo, she was very afraid of loosing her hair, and was very unhappy about that, she did lost all her hair, but not much time after chemo end her hair started to grow again, well, guess what, she looks so much better with her short hair, she looks 10 year younger now. Of course, I understand it's very hard to be positive about that, and this is all so very hard, people are very different and are afraid of very different things, family has to be around and support us (so do onc.). Maybe you could talk with her onc. about why he doesn't want her on cold caps, or search for some alternatives for her, look for some modern alternatives here:

when I was without any hair I used this kind of stuff, I liked it a lot:

http://www.ebay.com/sch/sis.html?_nkw=Aparte+BEANI...

main store here: http://www.ebay.com/usr/cassandra-fashion

Some people use natural hair wigs, and really, no one tells the difference between that and real hair, were I live there are some wigs that are permanent, you can even go to the beach with those, and take bath with the wig on, not sure if those kind of wigs exist worldwide.

I did try a synthetic wig once, I didn't like it, it caused me itching, and I felt my head too hot, but not everyone has those side effects.

I hope everything goes well.

Meow13

Thank you for info. I don't know why a neck biopsy was not done. She lives in Ohio and I am not sure what is going on. My husband's other sister is a nurse and her husband is a GP so we are getting are info thru them. Unfortunately they are in Massachusetts and not close either.

Lolita

Atanea,You ask what type of ovarian cancer I have.  It is carcinosarcoma which is uniquely deadly. I had bloating and didn't think much of it.  Then, I thought I had the symptoms of a heart attack and went to the ER.  They did a ct scan, and the cancer was everywhere in addition to a blood clot.  The ascites from the cancer was pushing on my lungs which was where the heart attack pain came from. No family history at all. y the way, my sister had her ovaries out after I was diagnosed, and the operation was not a big deal.  A hysterectomy would be a bigger deal, obviously. My sister was already in menopause, though, so that's different than your situation.

Meow, sorry to hear about your sister in law.  How is she doing now? 

I am still pretty sure that tamoxifen didn't cause the ovarian cancer, but what do I know?  All I have to go on is some studies and the fact that I didn't get the ovarian cancer until a year after I stopped the tamoxifen.

I am still doing well 21 months after diagnosis. NED.

Best to All,

Lolita

atanea

Hi Lolite,

Thanks for the sharing, I' m very sorry this happened to you, I'm very happy to know you are NED!

Who knows... I have to say I'm about 80% sure my breast cancer therapy (hormonal treatment or radiation or both) had an important role in my acute leukemia, but that's because my WBC, measured along a whole year, starting the same day I started my breast treatments kinda prove it, but after we have it, it doesn't matter that much.. If I could turn back time I would have forced full mastectomy (it was not offered) and maybe avoid radiation, but I would never give up on hormonal treatment, the risk of having a breast recurrence was bigger than having other stuff.

I believe we all do our best with the information we have at the time, I couldn't have known better. Now I have to take another big decision. I have already decided I'm going for the OOPH + hyst. I just don't want to do it right now, I would prefer to wait some years, but your story made me think that maybe I should at least do it before the end of Tamoxifen (2.5 years or 5.5 years from now, not sure). I'm probably going to wait to see if my ovaries stay quiet and don't produce any more cysts, and watch my uterus lining, I'm also going to ask for a hysteroscopy + endometrium biopsy, again, and I will do US every two months, just in case . If any doubt arises, I will take it all out.