Ok so we got the dreaded news… inoperable tumors

davevg

davevg said:

Ok so I got the ball rolling
Ok so I got the ball rolling yesterday. Yes our insurance will cover it. I will send all pertinent paperwork scans etc. and there onc gyn and onc surgeon well review them and get back to us. Although... the guy said pretty much most of the time they do concur with the inoperable part. But she could be candidate for clinical trials and the least would be chemo advice. I said hey we'll take what ever at this point. The guy was very very helpful and nice to boot.

Ok so the surgical onc at
Ok so the surgical onc at Johns Hopkins concurred that the tumors are indeed in a really bad spot and are inoperable. Jesh what a surprise... NOT. So I called and setup an appointment with the onc department and was scheduled for a consultation with Dr. Danijela Jelovac onc.next week. 4 to 5 hours one way hope we come back with something encouraging. On a good note her CA 125 is coming down from the current chemo treatment. Dr will scan her later this month or next.

davevg

situationgray said:

yes i had a recurrence in
yes i had a recurrence in september. i had a second surgery (the first was back in june, 2009).

this time, i had another surgery and they removed 3 tumors -
one near stomach , one in upper left quadrent of small intestine, and one behind liver.

they were able to get all of it out. i cannot remember what one was in the mesentary but
this surgery was very difficult (for the doctors) and took about 6 hours.

it was very risky but i wanted to be aggressive.

i had the chance to go directly to chemo but i wanted to try surgery.

this was my 3rd major abdominal surgery - 1 debulking in june, 2009 , 1 for adhesions & scar tissue in feb, 2011, and
then this one in september, 2011.

i read that a doctor told you surgery was not possible.

i went to a hospital for another opinion and got somewhat of a similar story - said they want to try chemo first to shrink things.

but my other doctors were willing to operate and they thought they could get to the tumors and they did.

good luck to you and i understand that yes it is true - sometimes tumors cannot be operated on but you have to at least
exhaust all efforts if you and your wife believe surgery is possible. it very well may be.
GL!
niki

Ok so the surgical onc at
Ok so the surgical onc at Johns Hopkins concurred the the tumors are indeed in a really bad spot and are inoperable. Jesh what a surprise... NOT. So I called setup an appointment with the onc department and was scheduled for a consultation with Dr. Danijela Jelovac onc.next week. 4 to 5 hours one way hope we come back with something encouraging. On a good note her CA 125 is coming down from the current chemo treatment. Dr will scan her later this month or next.

mopar

davevg said:

Ok so the surgical onc at
Ok so the surgical onc at Johns Hopkins concurred the the tumors are indeed in a really bad spot and are inoperable. Jesh what a surprise... NOT. So I called setup an appointment with the onc department and was scheduled for a consultation with Dr. Danijela Jelovac onc.next week. 4 to 5 hours one way hope we come back with something encouraging. On a good note her CA 125 is coming down from the current chemo treatment. Dr will scan her later this month or next.

THANK YOU FOR THE UPDATE
And good to hear you will get another consultation. AND good to hear the numbers are coming down! I know it has been a long road, but sending lots of prayers that this new doctor will offer new options and new hope!

(((HUG)))
Monika

evertheoptimist

davevg said:

We have a very good repour
Yes I know what you are saying. We have a very good repour with her Dr. He was visually shaken by the news he had for us. I trust what he says but just would not feel right if something happened and I didn't push for this second opinion.

dave,
If you are in the
dave,

If you are in the Philly area, try U Penn cancer center.

Not only it's one of the world's premier cancer center, it's also a very well known research center. They are doing some really interesting research on cancer vaccines.

Dr. Cukous (sp?) is doing clinical trial for cancer vaccine. It requires a fresh tumor samples of the patient to create individualized chemo.

Now, the question is, even if the surgery may not get all tumors out, it is possible or does it even make sense to do the surgery for the purpose of:

(1) getting the tumor samples for potentially creating a patient taylored vaccine.
(2) getting the tumor samples for cell assay testing in an effort to investigate chemo sensitivity (it's a procedure to find out what kind of chemo drugs are working for this patient at this round. Caveat: A lot oncologists, for whatever reason, do not buy into this notion. Those who support it, support it enthusiastically.

Back to the more basic stuff: After my first debulking surgery, they had to leave a good lime sized tumor behind (couldn't resected safely: they brought in a bowel surgeon in mid operation to get a second opinion, and together (bowel surgeon and my gyn onc surgeon) decided to leave it behind.

My front line chemo (carbo and taxol) completely melted away. A very close friend of my who is an OB/GYN in Manhattan who follows up with all of her patients she refers to the oncologists and is very familiar with gyn cancers was amazed: she was convinced that I would need a second surgery at the conclusion of my original 6 cycles of treatment. So, when the chemo works, it can do yeoman's job, and melt away fairly large size tumors.

BTW: you said there is a neuropathy issue. If so, are you still considering taxol? I believe taxol is the main culprit when it comes to neuropathy.

Avastin is a good suggestion. It is a controversial drug. A lot of marketing hoopla, but the survival benefit is thus far shown to be marginal. However, there is an increasingly well articulated opinion that it does not work well for all patients (hence, meager research findings), but work very well for advanced stage cancer with large tumor volume.

I am currently on it with Gemzar for my recurrence.

Good luck.

evertheoptimist

davevg said:

We have a very good repour
Yes I know what you are saying. We have a very good repour with her Dr. He was visually shaken by the news he had for us. I trust what he says but just would not feel right if something happened and I didn't push for this second opinion.

dave,
good
dave,

good surgeons/oncologist/doctors encourage their patients to go get second opinions.

Don't worry about offending anyone.

Beside, even the best doctors can have blind spots. Even the best mathematicians have the blind spots. Even the best software engineers have errors in their code.

If a physician takes it as an offense, that's HIS problem.

tryingtostaysane

Kaleena said:

Dear Dave:
As others have
Dear Dave:

As others have suggested, I would get second and third opinions. I was told I had a recurrence, that surgery would be out of the questions, it would be over a 10 hour surgery and they wouldn't be able to get it all so they would not do it. I did get a second opinion (who was actually with the first group) and he only wanted to do radiation (which would be the only time I would be able to get it at that spot). so I went completely out and got a third opinion. They reviewed everything and met with a team of doctors. Decided they could do the surgery. Not only was the surgery only 3 hours long, they were able to get all of it with clear margins, and to boot, the tumor was negative.

My best to you and your wife.

Kathy

can you give me a little more

can you give me a little more info on who was finallu willing to do your surgey? i know ny tumors most likely originated from thee fallopian tubes. so when i woke up.from an5 hour surgery i waited ,3 weeks for to hear the tumors are too extensive so we took NOTHING out. in my mind any reduction innrumor load or organd wouod help the patient fight. not only that but they nicked my colon so 3 days later i had to have an emergent iliostomy , which i felt like i was scared into that consent being the middle of the night and being in extreme pain. im desperately seeking otherrs with similar circumstances 

thank youlesh

 

Forherself

tryingtostaysane said:

can you give me a little more

can you give me a little more info on who was finallu willing to do your surgey? i know ny tumors most likely originated from thee fallopian tubes. so when i woke up.from an5 hour surgery i waited ,3 weeks for to hear the tumors are too extensive so we took NOTHING out. in my mind any reduction innrumor load or organd wouod help the patient fight. not only that but they nicked my colon so 3 days later i had to have an emergent iliostomy , which i felt like i was scared into that consent being the middle of the night and being in extreme pain. im desperately seeking otherrs with similar circumstances 

thank youlesh

 

Uterine cancer here

But I was reading this post and saw you have replied to a ten year old post.   Kaleena is still here and posts on the uterine board, which is more active than this one.  I am so sorry to read about. your surgery problems.  I hope there are others who can respond with some insight.