Possibly No Surgery :)

[PCCDaisy]

Hello Everyone!!!!!!

Am on my third chemo treatment and the plan is 3 treatments, surgery and then 3 treatments. Treatments are Paz/Carb. I have PPC 3C and 43 years old and also PALB2 positive-Surgery would be having a full hysterectomy and scrapping my Peritoneal lining.

When talking to my Oncologist he said my blood work is great and am taking this really - ascetics and pain are all gone. Only problem is neuropathy from treatments which pretty much goes after day 3 - Still walk and work everyday and my gardening.

Because of how great I responding I might not have surgery at all because he believes my CT scans and lab work will work great.

Has this happened anybody, you would think that taking out the culprits and scraping would help out the problem even more.

Cheers!!!!

[January-2016-UK]

I would deeply query the no surgery suggestion. Does the current pandemic have anything to do with the idea? Possible shortage of beds, trained staff and possibility of you catching COVID-19?

Everything I have read suggests successful surgery is more likely to lead to a successful outcome although some cannot have surgery because their disease is too diffuse and are treated with just chemo. Of course if you have not yet been through the menopause, losing your ovaries will push you immediately into menopause which I hear can be awkward. Others in this forum can tell you what to expect.

As regards the neuropathy you need to be sure to tell your team all your symptoms as this can worsen and they may need to consider a Taxol dose reduction.

[win_56]

As per previous reply I would defo query why no surgery. What grade where you when diagnosed. Where are you based?

[lesleysage]

Hello PCCDaisy, I concur with January and Win; ask why no surgery. You could also phone the Ovacome Support Helpline on freephone 0800 008 7054 as they may have guidance and information.

Warm wishes, Lesley

[PCCDaisy]

Helllooooo...

It was a grade 3C due to being PPC, I didn’t have any tumors or masses just lesions on the peritoneal and a small 2CM cyst on my ovary.

As for the pandemic I have been fortunate that I haven’t been pushed back for anything - actually I have been fast forwarded for all treatments and procedures.

I have blood work and my CT scan the day before my next Chemo treatment which we will be talking like we normally do before getting chemo. I think he wants to talk to my Obgyn/Ono/Surgeon on next steps. I surely want the debunking but maybe it won’t be as invasive.

I just wanted to know if anybody had this brought before them.

As for the Neuropathy I bring it up, but it has gotten a lot better, am very fortunate for it.

Thanks again!!!!!

[claireRoberts76]

Hello daisy, this is excatly what my mum had last year, ppc grade 3c ca125 of 3678!!!! she was told she must have surgery but 3 chemos first, then the operation then 3 chemos after! just before the operation mum had a scan and a phonecall to say that ( most) of the disease had gone with the 3 chemos but surgery was 100% the way forward then more chemo after.... mum so far so good is doing amazing a year out !

Im no expert, but I have done a lot of homework on this disease since my mum’s diagnosis and I would make sure that surgery is done .

Sending you big hugs from north wales 💗

[PCCDaisy in reply to claireRoberts76]

That is wonderful news. They just did my CA125 after two rounds of chemo. My starting number was 258, now it’s 45. Glad that is Chemo is working. What I think its re-evaluating and next course - their other issue is putting me thru menopause so early. Will see in three weeks, have another CA125 and CT Scan before my next round of Chemo.

Thanks again!!!

[Jack1066]

I believe that surgery is the best option. I have had debulking surgery after 3 chemo cycles. I would query why no surgery

Good luck

[PCCDaisy in reply to Jack1066]

They wanted to see how far I have come. After two treatments my CA 125 was 258 and now 45 and just finished my third last Friday. June 19th will be my fourth but also having a PET scan and another CA 125. Wondering just re-evaluation on what to do next. Just wondering if that happened to anybody else that debunking was in their future but because turn of events it changed.

I too believe surgery is the best option and will bring it up on my next treatment, but was just putting it out there for any other input...

😀

[delia2]

Hi. I agree with everyone. I have read that optimal debulking is the most important factor in one’s prognosis. It’s good you’re having a PET scan. I think there have been a couple of people on here who couldn’t have surgery because they just had extensive peritoneal seeding and surgery couldn’t remove it. It is good news that your chemo is effective and it’s not bothering you too much. Good luck! Xx

[delia2]

PS I also have the PALB2 mutation so have to be watched closely for breast cancer. However no one seems to know a lot about it. My daughter and sister have it too.

[PCCDaisy in reply to delia2]

While in the midst of this I got an MRI and also a mammogram - all is good. One less thing to worry about right now. So for my breasts will be getting an alternative MRI’s and mammograms every six months.

Thanks again...