10 years later non BRCA ovarian cancer
 

Hi all;

I was told 3 years ago that I was likely "cured" of breast cancer at which time I groaned inside but it did keep a little light shining. Luckily for me I had a very few drops of vaginal bleeding in March which took me immediately to my MD. She did a cervical biopsy (negative) and ordered an internal ultrasound which lead to an MRI. May 6th I had a staging hysterectomy which visually looked good to the surgeon.... no sign of invasive cancer and as only one ovary was involved, no indication that this had anything to do with my former breast cancer. This was fantastic news (especially the idea that it was not a spread of the breast cancer but of course we had to wait for the pathology). I received those reports last Thursday and I do have ovarian cancer..... Stage 1c. I've never been a stage 1 before so that was fantastic news especially since I had absolutely no symptoms! And confirmation that this is a totally new cancer. I had my first chemo (carboplatin and taxol) yesterday and am just beginning my research. I am being referred for genetic testing. In Ontario if you have both breast and ovarian cancer they must do genetic testing when referred. They keep talking naturally about BRCA testing but years ago I did a 23andme test which said I was negative. All of this is new to me and I thought some of you here might be interested in this news or might have ideas for me. I will say ovarian cancer is a very scary disease as I repeat .... No symptoms in my experience at early stages. I got very lucky and have hope for a good outcome but it wasn't even on my radar as at that time my particular breast cancer didn't seem to spread there. Take care everyone.

Cathy

Re: 10 years later non BRCA ovarian cancer
 

Hi Cathy,

Firstly I'm so sorry you got this news in the first place and are dealing with cancer again. However I agree you have thankfully been very lucky to have found it so early which is wonderful, I don't have any advice to offer on this as know little myself, but just wanted to send you good wishes for a great response to the chemo and hope you'll be NED again very soon.

Re: 10 years later non BRCA ovarian cancer
 

Hi Cathy,
Sorry to hear this news but fantastic that it was caught so early.
I know that it will go well because it is so early.
hugs and love
sarah

Re: 10 years later non BRCA ovarian cancer
 

Hi Cathy,
I was born in Victoria, B.C. but now live in France.
love sarah

Re: 10 years later non BRCA ovarian cancer
 

Hi Cathy,

Sorry to hear they found ovarian ca, but very glad they found it at such an early stage. I have a friend who had ov ca years ago, and she is fine now. Hers was stage 2, so I guess your chances are even better than hers.

May the chemo be kind to you and cruel to the cancer cells!

Love

Jacqueline

Re: 10 years later non BRCA ovarian cancer
 

What Jacqueline said. . . .

Let us know what you find out about BRCA. Maybe the 23andme test missed it.

I've never heard of anyone whose ovarian cancer was diagnosed at Stage 1. If you had to have it, at least there's that.

Good luck!

Amy

Re: 10 years later non BRCA ovarian cancer
 

Hi Tricia, Sarah, Jacqueline and Amy;

Thank you for your wishes. I know I am so very lucky to have this caught at such an early stage. I was told that I likely wouldn't have had any symptoms until Christmas and that my situation would not have been good. This is why I wanted to post this. As a triple positive breast cancer survivor it never crossed my mind to worry about ovarian cancer. I was told that my type of breast cancer spread to the lungs, liver, bones and brain mostly. I know that this diagnosis is not a spread of the breast cancer but I just can't help but concur with my doctors suspicions that there is some genetic component or (me now) that perhaps hormones or even Her2 that wasn't considered 10 years ago is involved. I don't know and am just starting to look into it but I will post any information I come up with. If 23andme missed this I would be horrified so I will be glad to find that out. Imagine who else could be affected but I will not make that assumption without proof.

This site has always been a godsend to me over the years and I have been monitoring over the years. I hope I can find a way to give back a little information that might help someone...one never knows. This crazy disease.

God bless

Cathy

Re: 10 years later non BRCA ovarian cancer
 

cathy - i am sorry to read that you have to deal with cancer yet again but so happy to read that you caught the ovarian at stage 1. that is amazing, because usually it's caught so much later because of the lack of symptoms. my mom had a couple vague symptoms even when hers was late stage. i was worried about the ovarian cancer so i had my last remaining removed as soon as i could. unfortunately, mom's was a rare one - primary peritoneal - and you don't even need to *have* ovaries to get it. i would be really interested to hear if you find anything out about an association with her2. in fact, i might ask my oncologist, who was also mom's. there is one benefit to remaining on tamoxifen for the foreseeable future, and that is that my onco stays on top of me even beyond 5 yrs out. good luck to you, i hope the chemo goes well and you kick it! valerie

Re: 10 years later non BRCA ovarian cancer
 

Hi Valerie;

I am definitely lucky as I had no symptoms at all. According to the pathology report it is a high grade serous carcinoma arising in a background of borderline tumour. I have an appointment with the oncologist next Friday and am wondering how to approach this. I am asking about Her2 and am also wondering about ER/PR. I'm wondering about genetic testing. They are sending me on but am thinking that I should have both my breast cancer and ovarian tumours tested and compared. I would be very interested in what your oncologist says and any ideas. You were so right to worry about this and take action. Honestly it never crossed my mind. How foolish in hindsight. I will post any info I get for sure.

Take care,

Cathy

Re: 10 years later non BRCA ovarian cancer
 

Cathy,

I had my ovaries removed as a preventative in 2006 although I know you don't always need Ovaries to get cancer in that area as Valerie has said. I remember at the time my Onc said there was obviously a close connection between breast and Ova cancer and so approved my ooph as something that could only minimize my chances of another cancer. Thanks for posting this and I'll be looking for your updates and send good wishes to you again for a good response to the chemo.

Re: 10 years later non BRCA ovarian cancer
 

Re: 10 years later non BRCA ovarian cancer
 

Cathya, I admire your focus on trying to find any pieces of the puzzle! I will throw in the odds and ends from my history in case anything from it helps, even though mine is (thus far) negative for OVCA. I also wonder whether your initial bc dx was HER2 positive?

I participated in the 10-year national trials for early detection of bc and early detection of OVCA because I had so many direct relatives who had been dx'd with bc, and one who possibly died of OVCA. The trial required annual abdominal ultrasounds, and periodic lab draws. The purpose of the lab draws was to try to come up with more accurate testing for OVCA. The 10 years ended in 2015. I don't yet know the details of the trial results, but am happy I participated despite the hassle involved with having the yearly ultrasounds done in Seattle on my own $ (since I live most of the time in Alaska). I am thankful that the investigative team in Seattle were supportive of my participation throughout the years -- especially the nurse coordinator there, who worked with my logistics to make it possible.

I received genetic counseling as part of the trials, and although testing for BRCA 1 and 2 was not common when the trial began, I chose to be tested, and my test results were similar to yours. I also chose to have blood testing on my own for completely separate research that was sent to an east coast research project to try to develop a better blood test for OVCA.

There just is no way to know who might be able to contribute some essential bit of information through participation in clinical trials.

Following up with testing was so important in your situation. Thanks for that reminder to us all, and best wishes to you!

A.A.

Re: 10 years later non BRCA ovarian cancer
 

Hi A.A.

My original breast cancer was ER+PR+ Her2++ borderline with no positive lympth involvement but a tumour in my supraclavicular node. The tumour was very aggressive and I received AC and Taxol, herceptin, arimidex and actonel.

I am hoping that my comments here will be an affirmation to all to be ever vigallent in the fight an I hope my genetic results will help somehow.

Take care,

Cathya

Re: 10 years later non BRCA ovarian cancer
 

My daughter is in a gyn onc fellowship program in Pennsylvania currently and I know from talking to her that finding ovarian cancer at stage 1C is pretty incredible. Happily you were paying very close attention to your body. Ovarian cancer can be an ugly disease mostly due to the fact that it is often in advanced stage before it is discovered. I think good fortune is smiling on you and I wish you the very best kind of response to your treatment.
Debbie

Re: 10 years later non BRCA ovarian cancer
 

Debbie;

Thank you so much. I had a small droplet of blood and immediately went to my doctor. I am fortunate about a number of things. Firstly my regular doctor sees me within days of any calls and immediately set up scans, etc., secondly that I had a thickened uterus likely due to taking arimidex for so many years which lead to the overall scans and thirdly that I received care at the cancer centre quickly. This is why I wanted to post here. Even after the internal ultrasound which indicated a problem it still didn't register that it could be ovarian cancer. It is very different from breast cancer both in symptoms and in treatment. It is a very sneaky disease. I think that once you are post menapausal you should begin having the CA125 each year (or more often) and watch its trends. I was also shocked to realize that the oncologist who is handling my ovarian treatments told me that he doesn't handle breast cancer and if I was found to be BRCA+ I would have to be referred to a breast specialist again (my wonderful oncologist retired). I wonder if the reverse is true. Are oncologists so specialized? If I hadn't asked I wouldn't have realized. You might ask your daughter about that as it is very scary I think.

Take care and all best wishes,

Cathy

Re: 10 years later non BRCA ovarian cancer
 

Gyn Onc's are very specialized. They do not treat breast cancer patients and focus only on other female cancers such as ovarian, vulvar, uterine, cervical and such. I guess any female cancer below the waist kind of describes it. They also manage the overall care of the patient including chemotherapy and surgery so they are quite different than an oncologist you would see for breast cancer.

Re: 10 years later non BRCA ovarian cancer
 

Debbie;

Wow. I only found this out when I asked about the BRCA testing as I had been told by my md that if I was positive that standard care is a double mystectomy. Does this apply to breast cancer oncologists as well? It wasn't my impression.

Also, Amy, I do not trust the BRCA testing results from 23andme as they only test the three most common mutations and not the thousands of others. My impression is you get what you pay for and they make their money selling genetic info to drug companys etc. Right or wrong this is my impression.

Take care,

Cathy

Re: 10 years later non BRCA ovarian cancer
 

Hi Cathy,

There is a Lynch Syndrome that put women in greater risks if their family has a history of cancer of the (brain), breast, Non-Hodgekins Lymphoma, digestive tracts or reproductive organs including ovaries.

I did the BRCA testing after a local-regional recurrence and reading/getting informed about the Jewish migration history in China (both my parents were from Southwestern China and their fathers were both merchants). The result of my test was only a Variant of Unknown Significance. After another family member (2nd Brother) received diagnosis and treatment for another Lynch Syndrome related cancer (Mother was diagnosed and treated for NHL when she was 75, 16 yeas before her passing from a stroke 2 1/2 years ago) while I was being treated for breast cancer recurrence, I requested and was approved for a hysterectomy and oophorectomy.

Never felt/looked better in my life!

Re: 10 years later non BRCA ovarian cancer
 

Hi Jackie;

I was tested for Lynch and it proved to be negative. My doctors think the VUS (like you have for Lynch) is the key but it could be years before it is confirmed. My 31 year old daughter is in the middle of a BC scare right now. She had a pinch I guess you would call it on the side of one breast and saw our doctor. She will be going for a mammogram next week and I pray it's nothing but these rare variations are not to be sneezed at.

You take care. I guess you need regular colonoscopies too?

This all stems from my fathers mothers family. She died in the 1930's when my dad was 13 and she in her early 50's. He only had one sister with children and we lost touch with them so I have no other information.

Cathy

Re: 10 years later non BRCA ovarian cancer
 

Certainly hope your daughter's mammogram result proves benign.

I had visited with the GI oncology surgeon at noon today. Supposedly to be a pre-op talk (as they'd already drawn a big tube of blood from my very 'hard-to-get-blood' left arm this morning) for the upcoming surgery on Wednesday. But she had found out about my brain (tumor) mri and brain specialist appointment on Friday. She contacted the neurosurgery department right away, but couldn't get them to move up the schedule. So she's going to wait till she's back from her two weeks spring break vacation (because she did not want to take any risks of my brain tumor situation - even though I had tried to convince her those are slow-growing tumors and the mri is just routine follow-up). In the meanwhile, I am supposed to check with her colleague and get operated on right away if my condition changes/worsens.