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Surgery!!!!!!

Best Friend
Posts: 222
Joined: May 2011

Mom went to Penn to find out catscan results. Chemo is doing it job and shrunk tumors quite a bit. Great! The only thing the same is her omentum which is where alot of the tumor was. I really would like to see the cancer. I know that sounds terrible but I love science and medicine. She has her debulking next friday. Dr.Chu said her chemo worked so well that the surgery should be pretty fast and shorter healing time. I asked my mother what they are taking out and she told me she didn't know. How could u not know? I knew I shoulda went with her. The doc said like a week in hospital should be enough, and 4 to 6 weeks to recover. Our doc near our house is gonna do three more chemos starting a month after surgery. He said there is a good chance they will get it all. I am wishing, hoping, praying that it works out. Finally, some hope for us.

VickiReed's picture
VickiReed
Posts: 66
Joined: Dec 2010

Everyone's Debulking I believe is a bit different, although most have the female organs removed and in my case the omentum too. My doctor said it all depends what they see when they operate. The doctor said with the three rounds of chemo it causes the tumors to shrink and before surgery are then the size of sand. I was asked as I was being wheeled into the OR if I was interested in having an epidural for the pain. Of course I said yes and it was a God send. I was easily able to get up and out of bed, do the walking, had an appetite and all. They left that in two days and then I had to switch to pain meds. Walking and eating weren't on my things I wanted to do list after that. I can't imagine all tha pain I missed out on. They originally thought I would be in a week but I was ready to leave after four days. (That was hurrying it but I wanted to go home!!) Please make sure someone will be there with your Mom at home, after her surgery. It is extremely tough for awhile. Getting out of bed is nothing short of a chore. My parents stayed with me and my husband was a big help too. My incision went from my belly button and down. I put vitamin E on the incision for healing. They let my husband take out the staples and give me the shots so I didn't get a blood clot (28 day supply).Best of Luck, keep us posted and I'll be sending prayers for your Mom.
XXXX
Vicki

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I know that your mom and I have had pretty much the same beginning in our journey. I am so glad she has done so well with chemo. I was a little apprehensive about the debulking surgery as well but my doctor thought chemo had worked well enough that he could do robotic surgery. (based on an educated guess not a CT scan). My omentum was gone (I guess from the cancer) and he took out my ovaries and biopsied areas and lymphnodes. I just had 4 little incisions that he glued shut and I didnt even need a bandaide! I was hungry by dinner! Pain was not really an issue as I had been on a Fentenyl patch (very strong pain med) since diagnosis and they decided to leave it on till surgery. It is probably not the best way to handle the pain as it is very strong and addicting but since I was already on it, a little longer was not going to make much difference. I did get off it soon after surgery. They only found a couple tiny spots of cancer but much scar tissue and adhesions. I only spent one night in the hospital and was back on chemo quickly.
Yesterday I found out I was accepted into a vaccine clinical trial at Cleveland Clinic. I am actually the first one in Cleveland to get the vaccine. You may want to look into it as it is just starting.
Hope this gives you a little insight into what is out there that may help.

I am praying things work out as well for your mom...give her a hug for me!

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

Yikes! now I am really confused. So, it seems "debulking" and "peritoneum stripping" are in fact two different things. If I understand the two descriptions above, the peritoneum (which is huge and thin) is not removed but the nodules are? Hence the word debulking which also includes taking out the female organs, etc. "Peritoneum stripping" on the other hand, is a different surgery that takes out the peritoneum, omentum, and everything on it. The brochure I have on this surgery was pretty definite about the length of the surgery (up to 17 hours) and the 3 weeks in hospital. Does the "debulking" surgery include the intra-chemo bath like the stripping does (chemicals infused directly into the abdominal cavity for 3 days in a row)?

I am really interested in this as I was turned down for the stripping but would like to know if anyone has had the cancerous nodules cut off of the peritoneum without the peritoneum being removed? I haven't seen any information on that. Help!

Cheryl

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

Debulking is when they take the omentum,visible cancer, femaile organs, do biopsies of certain areas and biopsy lymphnodes. HIPEC can be done with this surgery if it is PPC ...from what I understand it is not used for ovarian cancer. If I had to guess, I would think stripping was removing some of the scar tissue and adhesions and they could then try to do some HIPEC if needed. I probably shouldnt even say that as I am only guessing.I cant have IP chemo due to the adhesions and scar tissue.

Best Friend
Posts: 222
Joined: May 2011

I know my mom is getting the hysterectomy and her omentum removed and whatever else they have to do but the doc said nothing about the intra chemo bath! It makes good sense. Who knows! I will be there on Friday when she has it so i will let u know.

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

is the removal of cancerous or questionable tissue, with good margins. In some cases, it includes removal of the peritoneum. My debulking included TAH-BSO (I was in for a hysterectomy when my cancer was found), appendectomy, total omenectomy, multiple colon resections in 2 surgeries. My gyn did the TAH-BSO, appendectomy, and partial omenectomy; my onc surgeon at Sloan Kettering did the rest, plus placed a port for IP chemo. My peritoneum was left, tho small bits that were seeded with tumors were removed. My surgeon likes to keep the peritoneum if possible, as it encompasses the other abdominal organs.

HIPEC may be done with this surgery. If your mom was not told she was having HIPEC, then she won't be having that done. She would also have been told if they plan to follow up with IP chemo. These are not surprises sprung on you (plus insurance companies don't always like to approve HIPEC.)

IP chemo was originally done for ovarian cancers, then dropped out of favor for some reason. However, it is again becoming more mainstream.

Best Friend
Posts: 222
Joined: May 2011

Wow! U make me think maybe it won't be as bad as i thought. I unfortunately am working again so i hope she will be ok by herself until i get home from work everyday.

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

With the hysterectomy and all she is going to have a pretty big surgery. I hope there is someone to look in on her during the day if she needs something. For the most part she will probably do ok while you work. Just make sure the doc knows she will be alone during the day when she goes home and maybe they will keep her a day or two longer. When is her surgery? She will be in my prayers. Keep us posted.

Best Friend
Posts: 222
Joined: May 2011

Her surgery is Friday. I can ask someone to check in on her. I am sure someone will help. I wish i was rich and din't have to work, but i'm not that lucky. Hahaha. I will let u know!

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

It's very good news that your mother's doctor thinks he can get it all.

Meanwhile, I've got to wait on results of the PET scan taken yesterday to see what, if anything, they want to do with me. (I do know that my omentum was thickened at the start. The CT scans *did* show that. Just no tumors)

AussieMaddie

Best Friend
Posts: 222
Joined: May 2011

My mother had a strange floating line on her catscan. The gynecologist oncologist said it was probably nothing. The radiologist told her to have it doublechecked. Here it was the line of her omentum tumors.

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

Hi all: I searched on line and this is what I found out, sort of! Debulking is removing all visible tumours associated with ovarian cancer, i.e. it is a term used in ovarian cancer. But it can be more aggressive with removal of things not necessarily invaded by cancer like parts of the colon etc. Peritoneum stripping can be debulking plus complete or partial removal of the peritoneum and omentum with or without visible tumours. It is believed there will always be microscopic cancer cells on the peritoneum which is why it is removed. It is a much more difficult and longer surgery because of the nature of the peritoneum. Big piece of tissue there. As far as I could tell, the intra-peritoneal chemo bath has been used with both types of surgeries. I am not sure if debulking is used with secondary peritoneal cancer like from the appendix, colon, gallbladder. And not sure if we are still talking about different names for similar things and that stripping is a more aggressive surgery than debulking. It is not commonly done, at least here in Canada.
Any thoughts?
I am interested because I have secondary peritoneum cancer and would like to have the cancerous nodules cut out but not the stripping.
Cheryl

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Here's my 2 cents worth on the subject: I think the original surgery for OVCA is "debulking" as described above where the peritoneum may or may not be removed. I think the peritoneum usually is removed and for some reason, mine wasn't (I think I was bleeding too much from the rest of the surgery).

If the peritoneum is removed and grows back with cancer, then a person may be in for a second surgery where the cancer-studded peritoneum is dissected out of the body again. I don't see the point of this surgery without adding IP chemo or HIPEC post-op.

The omentum grows back, too.

LQ

Best Friend
Posts: 222
Joined: May 2011

I get that some things can grow back. However, if you get the surgery done and u have a chance to be cancer free to be with ur family for another couple years, I am sorry, but that is plenty enough reason for me to go ahead with the surgery. If it came for me having to get the surgery again than i would say no. However, once you have had the surgery an more chemo like my mom, she could be in remission and therefore they will be watching since this cancer returns so often. Hopefully they would keep an eye on any regrowths os organs, tumors, whatever the case and stop it when it begins keeping you from having to experience all of that over again!

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Peritoneal cancer is so tiny that it is hard to "watch" because often there is nothing to see. The more surgeries a person has, the more adhesions and risks of bowel obstructions they have, too. I'm just saying that surgery has it's risks, of course, you know that already.

Finally, scar tissue encases the tiny tumor implants making it difficult for them to be reached by IV chemo...that's why I think there should be intraperitoneal (IP)chemo if a person chooses to go into surgery again.

Best Friend
Posts: 222
Joined: May 2011

Not trying to be nasty or anything. How long have u had this cancer? I know alot of the negatives. I really do. My mom was told she was going to die in 6 to 12 months. That was in april. Her doc said he could treat her. There may be a point that she does want to give up but now cannot be the time. I have faith. I didn't have it for awhile but now after seeing my mom go through to the point where she has made it to. I have faith. REALLY! I know it will come back. Ok? I know right now she has barely any cancer and compared to what i have learned on the computer, this is amazing.Please remember that if i think the way u want me to, than i will never be able to live a productive life. I have a 7 yr. old daughter who was raised by my mother while i work full time. I know my mom is not ready to leave her yet or her other grandchildren. She is my mother and my best friend, and if she needs me to sit around and help her live or die i am gonna do it. I appreciate ur honesty, I do, but sometimes u should know that people know these things but we choose positivity. I know it's hard to "Watch" peritoneal cancer. if it was it wouldn't have gotten so bad. But they DO keep check of her cr125 and she CAN get maintenace chemo. She is still having three chemos anyhow. I just feel upset now, Thanks!

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Best Friend: I think your question/comments were directed at me. I am sorry if I upset you by speaking of the risks of having surgery. I am not trying to get you to think in a negative way--just providing information. Probably too much information, sorry again.

I spoke with my oncologist this week and found out that he doesn't do peritoneal stripping surgery after the original debulking surgery. In fact, he made a comment to me "Anything that I would do surgically now would probably just make things worse."

I consider myself to have survived the cancer diagnosis for one year--last year at this time I was still believing that I just had ovarian cysts when it was really ovarian cancer that spread to the peritoneum. The cancer was in an "inactive phase" for about 3 months where my CA-125 was less than 10 and the MRI scan looked markedly improved but now the CA-125 is over 150 but the scan still looks the same as it did when the CA-125 was low.

I have no symptoms of ascites or whatever might clue me in that the cancer was active again. I am following the guideline established by recent research that showed no survival advantage to starting back on chemo just because the CA-125 was over 70. This is what is recommended by the oncologist: plan to restart chemo only IF the scan show progressive disease OR there are symptoms of ascites. I know some women are getting back on chemo based on their CA-125 alone but the LONGER chemo breaks are better for quality of life and I am all about that.

Maintainence chemo sure sounds hopeful for your mom and I certainly don't want to take that away from you. Now you have this moment to celebrate the success of your mom's surgery.

I am one of most optimistic people you will ever encounter--the optimism actually worked against me when I was so sure that I couldn't possibly have cancer. Now I have to temper my optimism with reality--does that make me a pessimist? I don't think so. Although life sure was a lot more fun before cancer, sigh.

LQ

Best Friend
Posts: 222
Joined: May 2011

I have TOO many realistic moments. I try to seem like the optomist but I am a pessimist. I just have my own issues dealing with all of this. It seems now like maybe the doctor is being like so nonchalant about everything. I know for a fact that there are odds. I spent so much time on computer when she first was told what she had. I saw only statistics of 6 to 12 months survival time. I was laying around preparing for the funeral and how to live my life without my mom who has basically been my co-parent to my daughter.
The surgeon who found the cancer after all the years of pain sewed her back up and told her he thought cutting and removing everything was basically a waste of time. Thank God he is not an oncologist cuz he made my mom and our family believe she was done for. I will never forgive him for that. Everyone has told me our hospital here in town is crappy and I now see that it is not true. Of course people die from cancer. If that was not the case than i doubt it would be such a serious issue. Even my own sister was horrible to us because my mom wanted to be treated there. Now, I am so proud that her doc did for her what fox chase, or cancer treatment center of america could have done. He knew she needed the best doc for the surgery so he sent her to the best in Philly. He said she did a miraculous job. I just have to be positive cuz if I am not than she won't be. Don't get me wrong, everytime I look at my mom I feel terrible. She isn't the woman i knew. She is healing from the surgery and they are already starting chemo every week now instead of every three weeks. It is gonna be horrible but in a way she could be clean for a bit. It is what she fought for. And sure, it can come back and most likely will but I would love to see her happy for awhile after all of this. She wants to go away to Turks and Caicos next summer with the family. Those are the moments we should have had with eachother before this stuff happened. And when she gets healthier we can do all the things we should have done.
I am sorry if i came off strong. I have my own issues. I hope u are doing ok. I really do! Sorry

LaundryQueen's picture
LaundryQueen
Posts: 682
Joined: Mar 2011

Best Friend: I totally see where you are coming from. I have three grown children and only one lives nearby--she's the one who got to witness more than her share. I wish I could have spared her the suffering. Whatever you are going through is pretty much par for the course and it will get better over time. You just get used to the situation, I think.

You said that your mom "isn't the woman I knew." That made me think that maybe you are seeing the effects of her being on painkillers (usually narcotics). Narcotics are necessary, of course, and they can bring out personality changes.

I went through a lot of mood changes (irritablity and weepiness) and am sure that the narcotics were to blame. There came a point where I was taking the pain pill for minor abdominal discomfort because I knew it would make me feel "good." But then when the drug was wearing off, I would go on an emotional roller coaster.

The pain med made me constipated and the constipation made my belly uncomfortable so I had a good excuse to take another pain pill. Hence the viscious cycle. This probably went on for about a week before it occurred to me that I was getting addicted to the narcotic. I should have weaned off it but I just stopped taking it cold turkey.

When I quit taking the pain pill, I had about 2 days of feeling really, REALLY bad--mostly emotional. I felt like my nerves were really raw and everyone got on my last nerve. It was pretty rough on my husband for a couple of days but then I was myself again.

To change the subject, I just want to say that the first surgeon was out of his league when he operated on your mom--you can see the difference when your mom had the RIGHT surgeon operating on her. Part of the roller coaster ride that you are on was because of that initial surgeon--it sucks, but that kind of thing is happening all the time. The good news is that your mom has a really good chance to get into remission.

I read some research that admitted that the statistics have improved for ovarian cancer survivors but old information is still out there on the Internet. Having social support increases someone's chance of survival. So you & your daughter (and the rest of the family) are already doing a lot for your mom--more than you know.

Please keep us posted whatever is going on; we are here for you.

(((hugs)))

LQ

AussieMaddie's picture
AussieMaddie
Posts: 345
Joined: May 2011

{{{{{ Best Friend }}}}}
Protective, reassuring hugs. We all understand, and you're carrying a heavier load than many. I'm glad that you are with us for support.
Many thoughts go to you and your mum
AussieMaddie
xxxx

wanttogetwellsoon
Posts: 147
Joined: Apr 2011

The opposite was true for me ... just to put my own pennyworth in! I had IV chemo (make that having) instead of intra peritoneal because even if the adhesions in my abdomen were cut, there would probably be some microscopic cancer cells left. It's all so confusing! :)

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