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opting out of debulking

Vera30
Posts: 3
Joined: Nov 2012

Hi Everybody,

three months ago, my mom, 74 yrs old, went into the ER with bloating and was diagnsed with PPC. I feel like my life suddenly stopped as the doctor was giving us the news and now I live in some kind of cruel existance, parallel to everyone else. To date, we completed 3 rounds of chemo after which she got severe neuropathy in her lower exremities and her hands/fingers, having to completely rely on myself and my sister for everything. Also seems that her mild dementia has gotten much worse. But her markers came down from 1,000 to 250. we saw the surgeon last week and he said the new CT showed some tumors and he could do debulking, but after many hours of deliberation between myself, my sister and my husband (who's a surgical resident and has seen many cases when things go completely wrong) we decided to take our chances with just the continuation of chemo. I'm wondering if there's anyone out there with a similar situation, who's chosen again surgery? the doctors say that without surgery, we don't have much time,which makes it hard to hope for something positive. My husband and I have also waited a long time to start a family and now are scared because we don't what our future is. thank you for reading everyone and I do hope there's someone out there who can shine a glimmer of hope having taken a similar no-surgery route.

Paula2012's picture
Paula2012
Posts: 5
Joined: Aug 2012

Hi Vera,
I am sorry that you and your family are going through these struggles. I too have stage IV PPC and I know your pain. I would say the majority of PPC patients do have the debulking surgery, but I can understand to opt out considering your mom's age. I wish you well and would be more than willing to "share a shoulder" if you need one.

Vera30
Posts: 3
Joined: Nov 2012

Thank you to all who've lent their kind words. It's just been a whirlwind of emotions, pain and shock. It really helps to communicate with someone who first hand knows what I feel inside. We are now on rond of 4 of chemo. My mom's oncologist recommended revisiting the debulking issue after the 5th round. He seems to think it will give us the best outcome. To Patsie's question what my mom thinks of it- that's part of the problem: she doesn't completely comprehend and I don't want to push her in the wrong direction. I guess we just take one day at a time and pray that each day is a good day for us.

PatsieD
Posts: 100
Joined: Jun 2012

Hi Vera.. I can understand what you might be going through as my father had lung cancer. It's hard to know what to do when presented with a scenario like your mother's. I wonder what she thinks about it all. Does she want to have the debulking or is the decision resting with you because of her other illness? Being 74 doesn't seem to count as old age any longer and people are living much stronger physical lives now as the years pass. I have had many abdominal surgeries in the past so when I was diagnosed with PPC (now Stage IV), I wasn't recommended for further surgery because of scar tissue issues so I still have my omentum. Debulking is a difficult thing to go through, but many people do recover from it quicker than a person might think. Do you think the oncologist might recommend a different type of chemo than your mum has had in the past. I know that Taxol can cause tingling in the hands and feet but there are other drugs out there. Maybe it's a question to ask. In any event, my heartfelt good wishes are with you and your family. x

seatown's picture
seatown
Posts: 184
Joined: Sep 2012

Hello, Vera --

My sympathies on your mother's diagnosis. I got the same diagnosis at almost the same time, & I'm only a few years younger than your mother. Can't really advise you, but wanted to give you the benefit of my experience. I did not have debulking surgery upon diagnosis. It was mentioned, but my oncologist did not recommend it, perhaps because 4 years ago I had a hysterectomy/oophorectomy. Instead he recommended starting on Taxol/carboplatin right away, which I did. My CA 125 marker has gone from 2,700+ soon after diagnosis to 100 last I knew, perhaps even lower now.

I've had 2 PET scans since diagnosis, & the 2nd one showed some metastases had disappeared & the one remaining tumor had shrunk greatly. I also had severe neuropathy in all limbs, arms & legs in addition to just hands & feet, so my oncologist cut back the chemo schedule from 3 wks on, 1 wk off to 2 wks on, 2 wks off. This schedule has meant my neuropathy was greatly reduced but not entirely gone -- it's tolerable for me. Next week & following, I'll have my last 2 chemo infusions on the recommended schedule, then a PET scan, which of course I hope will show a further reduced tumor if not remission.

Just wanted to let you know that without debulking surgery, it's possible to see improvement. Should you be interested in more details on the course of my treatment, you can check out www.CaringBridge.org/visit/CaroleSeaton. Best of luck to your mom, you & your whole family.

seatown's picture
seatown
Posts: 184
Joined: Sep 2012

Meant to mention: you might be interested in this article from the NY Times on "chemo brain."

http://well.blogs.nytimes.com/2011/05/04/chemo-brain-may-last-5-years-or-more/

If you search that phrase on the NY Times site, you'll find other stories on the same subject.

Vera30
Posts: 3
Joined: Nov 2012

Thank you for the article, seems to explain many symptoms that I've noticed. I am so happy to hear that your marker has gone down so dramatticaly! that is good news, your cancer is responding to chemo, which is great. I did talk to my mom's onc MD about the severe neuropathy, he said that he will lower the dose, but didn't mention anything about a different schedule, so I think I will talk to him about that. He still does want to talk about surgery and at first that was my goal, but my sister is very much against it, says she feels in her gut that we shouldn't do it and I can't argue with that...For now I am just thankful for all the good days, when she's not in pain and we can just hold on to the time that we have left together.

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: I too have peritoneum cancer but mine originated from gallbladder cancer. I was never offered the debulking surgery but rather I was in line for peritoneum stripping and the HIPEC procedure but was turned down because I had a met to the liver. I am not sure I would have survived the surgery as it is (as one person said) "the mother of all surgeries". I had reactions to some of the chemos and my oncologist reduced the amount of one chemical and extended the infusion period over a longer time. Seemed to work.
Cheryl

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