My mother was diagnosed with stage 3c in late February of this year. The Dr. did not perform a debulk due to too much cancer (ovary, on her omentum, surrounding her liver and in her colon). Decided to start chemo to reduce tumors first. After 7 treatments and 2 CT scans, the tumors have not reduced enough for surgery. Her CA125 has gone from 860 to 46. The Dr's response is that "her cancer cannot be cured and she will be on chemo maintenance until it no longer improves the quality of her life. Go home and come back for checkups every three months unless she feels as though she is getting worse before that." I'm sorry, he may be absolutely correct, but I cannot just sit by and wait for the cancer to consume her. She has agreed to get second opinion. Has anyone else experienced something like this? Any advice other than just accept it.
Hugs and prayers for all of you!
Debra
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Dr. says just stop chemo?
- By KathysKid
- Posted September 4, 2009 at 9:11 am · 18 replies
- In Late stage
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- By georgia-foxynana
- Posted September 4, 2009 at 12:18 pm
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NO!! DO NOT ACCEPT THAT DOCTOR'S OPINION! A second opinion should be obtained immediately! My original diagnosis was almost as bad, but my GYN ONC was excellent and did the surgery, debulking, and subsequent chemo. If her CA125 went down that much, there has to be a chance that she could have surgery and survive for a long time. I was in N. California a few years ago and a friend was admitted for what they thought was a gall bladder attack. They opened her up and felt she was so full of cancer they could not get it all, so closed her up and left her to die, which she did a few weeks later. I later found out she did not have a gyn-onc surgeon and she could have been saved by someone that knew what he was doing. If your mom lives in Florida, there are many good hospitals there with GYN ONC doctors. Get her to one as soon as possible. And make sure she gets a PET scan, not just a CT. PET can show more definititively the tumors, size, location, etc. Best wishes and prayers to you and your mom!
G
- By ChiMom
- Posted September 4, 2009 at 2:51 pm
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I would not give up either. If they did a biopsy of the tumor they could send it away and have it analized for the best chemo to use to shrink the tumor. Definitely, get her to another ob/gyn onc and don't wait another minute. My doctor has treated successfully many patients that have come to him and were told there was no hope. There is always hope.
- By verbena
- Posted September 4, 2009 at 7:17 pm
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No debulking for stage 3c is strange to me...they even tried debulking for my mother at stage 4. i'm stage 3c with about as much of a distribution and they were able to remove quite a bit. i agree with everyone else...get another opinion, find another doctor who is an gynecological oncologist. she is obviously responding well to the chemo with that much of a ca125 drop so something just isn't right here.
i wish you both well
- By Patricia123
- Posted September 4, 2009 at 7:34 pm
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Second opinion as quickly as possible at a center with a gyn onc surgeon who is not afraid to be aggressive.
Unless your Mom has some other illness that is terrible, she can be treated. Even without surgery, more chemo is called for.
Try to get this and you won't be sorry.
- By KathysKid
- Posted September 4, 2009 at 8:14 pm
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She is seeing a gyn onc surgeon. Supposed to be one of the best in Clearwater, Florida. Everyone I talk to raves about him. I don't share their enthusiasm.
When he opened her up and saw all of the cancer he took a biopsy. He didn't debulk because he said bleeding was a risk and it would take her longer to heal, thus delaying chemo. I can't see why he couldn't have at least taken her ovaries. He suggested Avastin, but she went with Carbo/Taxol because of her high blood pressure. She was switched to Taxotere because of an abcess. Now her feet are numb.
Nice to know I'm not the only one with some serious doubts about this Dr's course of action. We will seek a second opinion. Thanks for all your feedback.
- By momanderson920
- Posted September 4, 2009 at 8:46 pm
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Just because you hear good things doesn't mean anything. I would get a second opinion asap.
- By zircons
- Posted September 4, 2009 at 10:11 pm
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Did she go to a gyn/onc surgeon? If not, get there. There is a cancer center in Tampa which is doing research on ovarian cancer. Try to get her into there. Is she also seeing a gyn/onc? Second opinion is very necessary. Let us know what is happening.
- By Jennali
- Posted September 4, 2009 at 10:29 pm
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I agree with all the other ladies here. I would be getting a second opinion ASAP. I was diagnosed IIIC, and had pretty extensive tumor involvement. Both ovaries, uterus (outside), bladder, omentum, and seeds on my colon. Also ascites. My gyn/onc was able to do optimal debulking surgery, followed by the requisite 6 rounds of Taxol/platinum.
I would not give up hope at this point without the confirmation of another expert. Get that second opinion.
All best wishes to your mom, with admiration for your advocacy, also.
- By TealOak
- Posted September 4, 2009 at 11:26 pm
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I agree with everyone else. Find another Gyn-Onc who is known for being aggressive in surgery.
I was stage 4: both ovaries, uterus, spleen, appendix, tail of pancreas, ascites, omentum, did ablation on diaphragm, small/large colon, bladder....and achieved optimal debulking. My surgery was much more extensive than originally anticipated as my tumor was very, very large and squashed everything in my abdomen which made the CT not very accurate.
I had Dr. Frumovitz at MDAnderson do the actual surgery. Admittedly I was 43 yrs old and other than the cancer, in excellent health.
I wish you and your mom the best of luck
Teri
- By FavoriteAunt
- Posted September 5, 2009 at 7:53 am
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I would never accept that as a final opinion. How could he tell you that when she's had such a big drop in her CA125?? It's obviously working. Find another doctor for your mom to see asap. If she responds to chemo, why not have her continue? Some doctors just don't get it, and if you have one of those, find another right away. All the best to your mom.
- By Mom82
- Posted September 5, 2009 at 8:14 am
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Wow, even when my 82 year old mother was diagnosed with late stage OVCA, she was offered chemo-therapy. It was her choice not to do anything, but if she had accepted they would have done anything to prolong her life. It should really be the patient's decision whether they want to fight or not.
Definitely get a second opinion, I don't even understand why the surgeon did not at least take out what he could, while he was in there, even if total debulking was not possible at that time.
I hope that you find a more human doctor for your mom.
- By Patricia123
- Posted September 5, 2009 at 8:45 am
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TealOak! I cannot imagine how you felt post op,,that is an amazing surgery you had. How are you doing?
- By Doreen0511
- Posted September 5, 2009 at 9:39 am
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I also live in Florida and was vacationing at a state park when I got the pain. My surgeon is in Sarasota and used to be at Moffit Cancer Center in Tampa. I would highly recommend him. If interested in his name let me know. I plan to continue to travel the two hours to have him continue with my care. Good luck.
- By bluecanari
- Posted September 5, 2009 at 9:51 am
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Dear Debra,
I agree with everybody here - GET A SECOND OPINION! The other suggestion I have is to go to one of the big hospitals for surgery if you can (Anderson, Sloan or Hopkins). They have great aggresive surgeons.
God bless you and your mom
- By quacker
- Posted September 5, 2009 at 3:11 pm
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I am alive today only because of the aggressiveness of my gyn/onc. I was stage IV at diagnosis with massive liver and lung involvement and he spent 5 hours debulking me, with IP and IV chemo afterward. Do NOT accept the sentence that "nothing more can be done". If you live in Florida, and would like the name of my surgeon in Miami, email me.
- By TealOak
- Posted September 5, 2009 at 8:54 pm
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Patricia123
My surgical recovery really wasnt that bad. I did not even take prescription pain meds when I got home, just some advil. However I was in the hospital about 6 days after surgery before being released.
Unfortunately I had disease progression on first line chemo and so was dx with platinum resistant clear cell. About 10 weeks ago I started a phase 1 trial ( doxil, avastin, torisel) as my second line chemo and the 6 week results showed a 26% reduction in my tumors ( liver and lymph nodes). Although the statistics for me totally suck, I feel good and am active; drive myself to all chemo & Dr appointments and am completely self-reliant.
Teri
- By Patricia123
- Posted September 5, 2009 at 9:11 pm
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Teal,,amazing, keep it up. I think we do better than "they" think we do,,Pat
- By louiseskiingvail
- Posted September 8, 2009 at 10:21 am
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Last October i was debaulked (stage IV), woke up from surgery doped up and accidently asked how bad was it? the reply was 3-5 years of survival and to start chemo right away. My husband had me walking so quickly, and walked me out by the 3rd morning. My surgeon was so negitive and i did not accept it. I stopped all pain medicine to start focusing and
I searched high and low for my type of low grade OC and discovered MD Anderson as a second (actually a third) opionion. In contrary they said no chemo (only with low grade) and they believe the survival would be much longer.
There are so many different beliefs! Please find a second and a third opinion! If all possible try to find one which understands your moms specific type of OC. Possitive thoughts!
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