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what does the doctor really mean?

blondecat
Posts: 13
Joined: Nov 2010

I don't get it. Our friend Gerri, has finally been dianosed. After a couple months of saying peritoneal cancer, her debulking surgery and labs confirmed stage 4 ovarian. Gerri has lost 40 pounds since she first starting feeling "off" in November. The tumor was fast growing. It was not seen on any scan in December and by January was the size of a golf ball. It was wrapped around her intestines. Several feet of large and small intestine were removed along with the tumor, her one remaining ovary and her omentum. She has had constant diarrhea since and now has malnutrition and dehydration. The doctors say her ileum is reacting to the surgery and have placed her on "binding" medicines. The doctors cannot start chemo until she regains some weight and strength. Despite this, her doctor told her she has a 100% chance of a cure after her 26 weeks of chemo followed by avastin. How can he say this? Gerri is of course, very relieved. The rest of us are certain he means she will have a remission period at that time. Do you think the doctor is trying to keep her hope up and feels that is the information she should go with? Or is it cruel to suggest after 26 weeks she will be cancer free and cured for years? Will she be crushed when she has to restart a chemo treatment? Most of you seem to almost take ongoing treatments in stride. What were you told in the beginning? We are a close group of friends who have spent hours upon hours on line in search of help and knowledge for Gerri. We need to know what she needs to know.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Any doctor who tells you he can cure stage IV OC is doing his patient a huge disservice, if you ask me (and you did ask me).
Are you certain that's what he said?

There is. good chance Gerri will be NED for some time following first line treatment. And there is a good chance she will recur within 2 years.

Hope is a wonderful thing and should be encouraged but distorting the truth is not spreading hope, it is simply setting the patient up for a cruel and almost inevitable disappointment.

Carlene

leesag's picture
leesag
Posts: 624
Joined: Jan 2010

I would say that I agree with Carlene, if we are talking about typical OVCA types and tumor pathologies. However, there may be something unique about her cancer that either she hasn't shared with you or didn't register when her doctor spoke with her. I haven't done nearly the amount of research on OVCA that Carlene has, my own cancer is epithelial ovarian, and that is typically a very agressive and recurrent cancer. I believe that there is a type of OVCA that is more easily "cured" than epithelial. So perhaps, that is what she is dealing with. Before you tell your friend that her doctor is lying to her, make sure you have all of the facts about her cancer.

Another point is this...

My oncologist told me that we were "AIMING" for a cure, and she thought that it was certainly possible. An important thing to know about the psychology of cancer patients, some of us will be cautiously optimistic with that kind of statement, some of us will aggressively pursue all options to ensure optimal results, and some of us will grasp that thread of hope with both hands and turn it into an absolute truth. My suggestion is this...

*encourage Gerri to join a support group of other cancer survivors (this board is great)

*don't dash her hopes or disparage her doctor openly (suggest a second opinion just to be "safe" if you like) because a positive attitude is necessary for her at this point.

* My oncologist and my gyn/onc both told me, separately, that fast growing, agressive tumors like the ones I had react very well to chemo.

* Also,perhaps there is more about her tumor pathology that you (and she) don't know. I never asked for any specifics beyond the type of ovarian cancer and the stage. Many folks here, Carlen is one of them, like to be more informed about the tumor pathology. Tumors are like hair, there come in many shades and styles!

Finally, she may be putting a good spin on things and not sharing the doctor's full discussion with you. Perhaps to protect you or perhaps to protect herself. This is a touchy issue, and your relationship with her will determine how you choose to handle it.

I'm sorry if I'm not much help. It is true that Ovarian Cancer has a high recurrent rate. It's also true that people react differently to this. My husband and friends are the ones in denial in my life. I'm very aware of the facts, and it's discouraging to me, sometimes, that they don't want to hear anything negative. On the other hand, if I were expending lots of energy to stay positive all the time, I would be very discouraged if they kept reminding me that it could come back at any time.

It's a catch 22.

Hugs and Prayers,

Leesa

Disneynutt's picture
Disneynutt
Posts: 135
Joined: Aug 2009

Very well said ladies.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Sorry to hear about Gerri's current situation. What helped me the most is that people in my support system allowed me to come to terms with my diagnosis/prognosis at my own pace.

As already said, the faster the cancer grows, the faster it responds to chemotherapy.

The way I see it, the diarrhea situation is the priority. Do you know if Gerri was tested for C. diff (hospital-acquired intestinal infection) because even if she had a negative stool culture result, she could still have the infection and she might need to be retested. The "binding medicine" (cholestyramine) is used to treat C. diff along with vancomycin so maybe that is already being addressed.

Since Gerri's chemo is on hold for now, I would hope her doctor is prescribing IV nutrition in the form of "TPN" before she becomes even more malnourished...too many doctors wait until people are really cachectic and wasted away before starting TPN.

take care,

Carolen

blondecat
Posts: 13
Joined: Nov 2010

I'm thinking Gerri does have epitheleal cancer. Her daughter was trying to think of that word when first talking to me about this. Knowing that a tumor will be hit hard by chemo is a good thought to have. How long were you NED after your first chemo treatment?

Fortunately, the diarrhea has finally slowed down. The doctor said the part of her ileum that was removed is the part responsible for bile salts. he said people who have their gallbladder removed go through this same type of diarrhea as well. Gerri will probably be on the binding medicines for months, years?

Thanks for the thought that maybe Gerri is trying to protect us. We know her husband is in absolute denial of this, asking the oncologist how bad would it be if they just did nothing.

Di you ladies find this site on your own or did others direct you to it? Thanks again.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

If she has Epithelial Ovarian Cancer - the most common type- doing nothing is a really, really bad idea. I asked my doctor that same question and he said, "You will be dead in sIx months."

No one is NED after one chemo treatment. However, 85% achieve full remission after a series of 6-8 treatments (usually Carbo/Taxol). That's the good news. The bad news is that the overwhelming majority of those will recur within two years. I think there are 2 women on this board who were diagnosed at stage III or IV who did not recur within two years. The rest of us either had a recurrence or don't have two years under our belts yet.

I hate to sound like Debbie Downer but neither do I want to give you a false sense of security. Gerri has a serious illness and I urge you not to encourage her to adopt her husband's attitude. It is vital that she get aggressive treatment, the sooner the better.

Carlene

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