My Cup Funneth Over,,,have OVCA and BRCA

lainy · 03-26-2008, 10:25 AM

Pardon the pun, but seemed appropriate.So glad I found this website...I was dx'd with Stage 111C Grade 3 OVCA, aggressive type tumor,in 2004, Had Optimal Debulking surgery and have been in remission since First-line chemo ended, Feb 2005. I've been with an Online CancerCare OVCA Group since'04, and still perticipate. I'm a true believer in online groups, bonding, researching, and keeping a wide margin for hope. In short, having a good attitude helps recovery. Not easy for most at first, I know.

I also have a rare, incurable sight-threatening,( but controllable ) Eye disease since 1992. The genesis of my cancers may be linked to this since when I have flare-ups, I must go on systemic, highly toxic anti-inflammatory meds that contain warnings of "may" cause some types of cancers. Since the only other option was losing my sight, it was a no-brainer,

In June, this year, I was shocked to learn that I had breast cancer...knew having OVCA put me at higher risk, but never thoght it would happen to me... I had tested genetically negative for BRCA 1 and 2 with no family history.

This is where my biggest problem with both diseases, OVCA and BRCA began. the Pathology for my Breast CA was not good. It was Stage 1, and I did manage to have a Lumpectomy, no lymph nodes involved, and the tumor was only 0.9 cm. But the rest was all downhill. I was Her2 high positive, ER hormone was 1-4% (equivalent to 0), and Progesterone 0. I quickly learned that this was not good...more aggressive, greater risk of recurrence etc. Worse, it was in direct conflict with my OVCA Pathology which was tested for Hormone Receptors and came out 87% high positive.Not good for OVCA. The BIG dilemma is that what is good treatment-wise for OVCA is not indicated for BRCA.

When I was in remission, my GYN/ ONC put me on Femara, but my medical ONC felt it was too high risk and changed it to Evista. So after my 6 sessions with Taxol / Carbo ended I stayed on it as maintenance therapy.When you're in remission from Firstline OVCA...( a RARITY !!) you becaome both thankful and protective of it...it's so easy to slip into recurrence, and I worry now about preserving it with such opposed pathologies. Combo therapy is encouraged, and I'm still looking for something stronger. But the most powereful adjunctive ones for BRCA are attached to Hormone Receptor Positve patients, which I;m not...However, I'm so thankful that Herceptin was recently approved for Stage 1 Breast CA. I would not have been able to use it, otherwise. I am a Senior, and Medicare wouldm't have approved it.

I am tolerating Herceptin very well, ( same as I did with my OVCA taxol/Carbo treatments)...used to describe the Hospital Infusion Dept. like going to a SPA..very caring staff etc. Have no side effects other than tiredness for 1 day afterwards. But have had some crises..Twice, I've had to go to the ER fora port infection DX'd as Cellulitus...can be very serious if not attended to quickly.I may need a new port, not looking forward to that.
I am so anxious to hear from all of you and to get to know you better.
I am an ex-New-Yorker, divorced, live in Little Falls NJ, have a daughter and three Grandkids, 14, 12 and 10, living in Cold Spring NY. (Still need to get my NY "fix" every month. I am a retired Creative Director of Graphic design, I am also not very computer-savvy...hope I don't lose this post,,,happens frequently to me and others at my OVCA group. haven't a clue right now on how to exit.

Elaine

lainy · 03-26-2008, 10:51 AM

Ooops...

Just caught 2 errors in my first post. I tested OVCA high positive for Estrogen Receptors, related to hormones...and totally mispelled Adjuvant ( along-with type therapy). Saw a few more minor ones, but having written such a long one, didn't want to risk losing it in editing.

Elaine

Joe · 03-28-2008, 05:07 AM

This was posted on our newcomers board, I thought it important enough to move it to the main board,

Regards
Joe

Mary Jo · 03-28-2008, 05:19 AM

Hello Elaine,

Welcome to her2support. We are happy you found us. I can definitely attest to the fact that many wonderful people here will be able to share with you all the knowledge they possess (definitely some smart cookies hang out here

- me not being one of them) However, I can welcome you with open arms, a caring heart and a prayer said for your journey.

Love and Peace be yours today Elaine,

Mary Jo

schoolteacher · 03-28-2008, 07:08 AM

Welcome to the board. You will learn meaning interesting facts from the women on this board. They have really helped me with my neoadjuvant therapy. I am better prepared to talk to my oncologists from reading information they discuss.

Amelia

Becky · 03-28-2008, 09:43 AM

Welcome Elaine

What a true warrior you are! Please post any questions you might have. We are ready to help you anytime.

kareneg · 03-28-2008, 09:49 AM

Welcome to the site Elaine. The women here are the best and will help you in any way they can. I would not have gotten this far with out this site I really believe that. So welcome again my new friend.

kareneg · 03-28-2008, 09:49 AM

Welcome to the site Elaine. The women here are the best and will help you in any way they can. I would not have gotten this far with out this site I really believe that. So welcome again my new friend.

tricia keegan · 03-28-2008, 09:49 AM

Hi Elaine, Ihave a very comfy cat on my lap right now so forgive my type error's as i'm typing with left hand only. Just wanted to welcome you here and I look forward to getting to know you better..

AlaskaAngel · 03-28-2008, 11:10 AM

Hello Elaine,

Regretfully, I'm not one of the bigger brains here and what I do have seems to need constant dusting off. Given your history I agree with the rarity you mentioned and like to think it bodes well for you, whatever your particular mix of genetics, epigenetics, and treatments might be.

I am one participant donating blood samples every 3 months to the clinical trial for early detection of ovarian cancer, getting a CA-125 each time and an annual TVUS, while researchers pore over my sample to see if they can come up with better markers. (A paternal aunt died of OVCA.) I've been in the trial for several years.

I posted in the clinical trials forum here recently about a clinical trial Yale has been doing to come up with better markers for OVCA. I don't know if you know about it or would find the info in some way helpful in your situation since you are in remission but thought I'd mention it, in case you want to take a look or perhaps have further information to share with others here about it. I agree, researching and sharing whatever we know makes a real difference.

Hugs,

AlaskaAngel