Opinions appreciated

[SusiefromOZ]

I have never been debulked. Was DX Feb 06 with laparotomy stage 3. Gynae Onc not able to remove tumour as there was involvement with main artery to the bowel. Was going to do 3 rounds of carbo/taxol and then go back in. I had such a good response to the chemo they decided not to do more surgery. After i finished my chemo my Ca was 50 but was down to 12 2 months later and PET scan was clear. Unfortunately at the 6 month mark i had reoccured ca 120 and a few decent sized tumours. My gynae/onc does not want to do surgery. 6 rounds of Caelyx shrunk my tumours and lowered my markers but they went up again. Tried carbo again and had good response but had allergic reaction after 2 treatment of 2nd round. Am now on Cyclophosphomide but don't think it is doing much. I finally got an opinion on surgery from another leading gynae/onc and he says he is prepared to do the surgery as i am still young (45). He said if i was his mother/sister/daughter/wife he would take the surgery. He said it will be a big operation. I have to make my decision to operate within 2 days because of the xmas holidays. I am feeling very scared and confused as to what to do. I have always had my decisions pretty much made for me and now i have to make my own. Not sure what to do. Any advice, sugestions, opinions will be greatly appreciated. P.S both are gynae/oncs and are head of that dept in their respective hospitals.

[Jan214]

If this second surgeon is well respected in your community and he actually has skills the other Dr doesn't, I think you should do it.  You can't expect to get rid of cancer when the tumour is still in there and you will be on chemo continuously.   Is it possible that with more chemo it could shrink the tumour enough to make it easier to remove or doesn't that matter given the artery involvement?  Susie, you are not in Kansas anymore, you are 45 yrs old and you will have a lot of decisions to make in the future.  It isn't as hard as it seems. Just do your homework and be your own best advocate.  I am curious as to why are just now starting to make your own decisions.
Kindest Regards,
Jan

[Helmar]

Hi Susie...I'm sorry to hear your news... and yes, it's always a torment when one has to decide which way to jump with this lousy disease. If you have solid tumours, then an operation could be worth a though. Unfortunately I don't have anything solid...just like rice grains.. so further surgery is out for me. Where do you live? If the surgeon is well known, and has a good record, then you should be fine. I suppose the only doubt would be with the main artery. That is the very reason my surgeon wouldn't operate on the lymph node in the groin.. it lays over the main artery. I've also had Cyclophosphomide and it didn't work for me either... and I had it with 2 others chemos.
I wish you all the best... and hope that things will sort themselves out for you...hugs...Helen..

[Brownie3321]

Hi Susie - I would say do the surgery. Why wait around and continue to try out different chemo drugs when your chances of a recurrence COULD be lowered by the surgery. I'm 27, and I didn't get to choose, I was told I received a total hysterectomy after waking up in the recovery room. But,  I wouldn't have it any other way. I believe that by removing everything, my chances of beating this nasty beast are stronger. Good luck and best wishes. Deandra

[rootietootie]

Hi Susie, I am sorry you are faced with such a big decision especially around the hoidays.  I suggest you do the surgery. I think your overall odds of beating this thing would be better.  Good luck to you and keep us posted!  Hugs to you, Shannon

[SusiefromOZ]

Thank you for all your replies. I am booked in for surgery on 17/1 but am still concerned that they might get in there and find they can't remove it so i will have had 2 major useless surgeries. The scans are now nearly 2 months old and things have gotten worse since then. I am going to see if i can get a current scan maybe an MRI so that we have a better picture. It has been 2 yrs since diagnosis and i have had plenty of chemo since then so there isn't as much there (i hope) as originally so am not sure about the artery problem. But the tumour was wrapped around my bowel and bladder originally as well so that was another reason he couldn't remove the tumour. Both surgeons are highly regarded but with this surgery i will also have a general surgeon assisting and i have been told that they are really good to have on board because if there is something in an awkward area they are usually the best surgeons to deal with it. In answer to your question Jan I have had many decisions to make over the last couple of years. I have always argued with my gynae/onc about not having the 2nd surgery but he says i wouldn't benefit from it - it's hard to disagree with someone who is top in his field. Most people don't even question their medical team in terms of their treatment. But i have had 2nd opinions from an equally highly respected surgeon and another oncologist who say the opposite. I have also learned that there is a certain amount of politics involved and that things come in and out of fashion ie surgery vs chemo. So tough decision for me - this surgery is not a walk in the park. By the way the OZ refers to Australia where i live. Once again thanks for your replies - i might even ask on the doctors forum. I hope you all enjoyed your Xmas and best wishes for the New Year.

Susie

[nolabean]

Hi Hon, If I were you, I would go for the surgery. The chances of the tumor just disappearing are remote at best. Chemo alone does not seem to be doing the trick, at this point, surgery seems like your best option. After my initial surgery and chemo, I had a decision to make, more chemo, just wait and see, or second look surgery. I opted for the surgery, I could not have continued for 18 more months of carboplatin and cytoxan and wanted to put an end to the guesswork. The surgery lasted more than 8 hours, but afterward, I had my answer. Surgery was the right decision for me. I just saw you surgery is scheduled for 1/17, it is a good omen that I am reading this. I had my last surgery on 1/17/1991......January 17th is my birthday. All the best to you, I will be praying for you!

[SusiefromOZ]

Thanks, i am superstitious so i appreciate your good omen. I am going with the surgery. Fingers crossed that they will be able to get rid of it. Happy Birthday for the 17th.

Susie

[Jan214]

Your are right that most people don't question their medical team.  Many of us here did not but have learned to because they don't give us any other choice sometimes.  Too true also about the politics and isn't that a pity when they are politicing peoples lives away.  Again you are right about the fashionable thing to do with cancer.  That sounds funny but it is true.  I am sure that kind of surgery is anything but a walk in the park and I know how difficult it is to make those kinds of choices.  My reponse sounded sharp and I did not mean for it to sound like that. There are women who as you said have all of their decisions made for them.  I have a neighbor with this and she doesn't know the first thing about her cancer.  Her Dr tells her husband everything and he tells his wife nothing.  He makes all of her medical decisions for her.  You sound pretty tough to me and entirely capable of making your own decisions. :)
How can your surgeon be so sure he can get it out if he doesn't have a current scan.  Are you scheduled for one before surgery?  I would think they would want a more recent one; a newer road map.  If they think they can get it i would definitely try.  I don't think a surgeon would tell you he's
going in to do such a big operation unless he thinks it will be beneficial.  Without the surgery I am afraid you will be on chemo way to much.
You will be in my thoughts and prayers.  Please let  us know how it goes.
Jan