Low grade Primary peritoneal cancer: I was... - My Ovacome

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Low grade Primary peritoneal cancer

CBRx profile image
CBRx
12 Replies

I was diagnosed with low grade primary peritoneal cancer last August. Just wondering if there are others with low grade. Appears most others with this type of cancer are high grade.

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CBRx profile image
CBRx
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12 Replies
Nancy222 profile image
Nancy222

Hi CBRx,

There are some of us low graders around :)

When I joined, I did a search of "low grade serous cancer" and read posts.

Is there anything in particular you want to talk about?

Were you able to have surgery? Chemo?

XXOO

CBRx profile image
CBRx in reply toNancy222

Hi Nancy, surgery is not an option as my tumors are small, but plentiful. My Dr recommended not to do chemo, as low grade tumors have shown to be chemo resistant. I sought a 2nd opinion and the other Dr agreed. I am on an aromatase inhibitor, which is believed to slow growth.

ScardyCat40 profile image
ScardyCat40

I have low grade serous cancer. I was diagnosed Stage IV in 2011

SuzanneKau profile image
SuzanneKau

Hugs to you CBRx. Sorry you’ve joined our club. I was diagnosed with Low Grade Serous Primary Peritoneal cancer in Jan. 2017. I am stage 3C. Low grade is more rare than high grade — 5-10% of Ovarian/Primary Peritoneal Cancer. We’ve out here. Please post any questions you might have. We’ll be happy to try to help. Take care. Suzanne

CBRx profile image
CBRx in reply toSuzanneKau

Hi Suzanne, what treatment are you doing? I am stage 3b. My oncologist has me on Anastrozole in hopes of slowing growth.

SuzanneKau profile image
SuzanneKau in reply toCBRx

I had debaulking surgery followed by 6 rounds of carboplatin /taxotere. Following chemo, I went to see Dr. Gershenson at MD Anderson Cancer Center in Texas. He’s a world renowned expert in low grade. He started me on Letrozole in Sept. 2017. My CA-125 always runs very low. It jumped up a little last check so we’ll see what next check-up brings in May. I may have mixed low and high grade cells like Gleedy because my P53 is mutated which is generally seen in high grade. In the end, our diseases are all very unique, it seems.

Gleedy profile image
Gleedy

I was diagnosed high grade 3c PPC at one hospital. Now I am at the Royal Marsden I am told I have mixed low and high grade cells. Apparently this is harder to treat. I've never been told why diagnosis changed.

Maus123 profile image
Maus123

Happy to connect and help where I can.

Mine is a borderline & low grade serous ovarian cancer stage 3a, and I'm just going through first recurrence in lymph nodes. Had 2 surgeries, both successful (all visible cancer removed). But unfortunately, I've moved back to Germany between original diagnosis and recurrence, and they really don't offer aromatase inhibitors / HMT as treatment for low grade OC here.. yet.

So I'll have 6x carb/tax chemo this time round, which goes some way towards opening the HMT (hormone maintenance treatment e.g. Letrozole) treatment route, or trial participation here in Germany. Although to be honest, I do not believe that chemo increases the survival chance for low graders.

Stay in touch. :)

Maus

thomas62 profile image
thomas62

Hi CBRx

I am also a low grader diagnosed Feb.2014 3b. I have had 2 surgeries to NED (no evidence of disease), been on Letrozole for 15/18 months and also had standard chemo. On 2nd surgery I had a bowel resection. I am feeling really well. Yes low graders do not always respond to chemo. Perhaps you can google David Gershensen of MD Anderson Hospital in America who is an expert on Low Grade and who has done a lot of research into low grade.

Best wishes.

Zena41 profile image
Zena41

I’m low grade

Luvmysister profile image
Luvmysister

My sister was just diagnosed with low grade. She had surgery about 2 weeks ago and is doing great however the pathology report showed two lymph nodes near her bowel that was respected showed cancer. They said this was fairly common. All other lymph nodes were clean. She finds out about chemo or no chemo next week. What do you think she will Have? How will she feel?

Zena41 profile image
Zena41

Mee

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