Talking through My Options

[mollyc]

I've been meaning to sort of poll the group although I think I may have made up my mind already, sort of.  I guess poll isn't the right way to say that but to get some feed back that isn't emotionally connected to me.

So I had surgery for ovarian cancer at the beginning of May.  Since I'm already in menopause, they took everything including my Cervix to be on the safe side.  The tumor they had seen on the outside of my left ovary was Stage 1C2 Grade 2.  They found a malignant tumor inside my right ovary.  The specifics of the right ovary tumor were never given to me so I am assuming it was the same or less.  They didn't find anything else in any of the other organs/parts they took out and tested.  All of the cancer was removed by the surgery.  But there were abnormal cells in the abdomen wash.  They can't say that these abnormal cells are cancerous or not.  Just that they are abnormal.

To make life more interesting, my cancer was Endometrioid Ovarian Cancer.  Which is a less common ovarian cancer.  For the purpose of chemo, it can be treated like Endometrial Cancer or Ovarian Cancer.  My medical oncologist has given me the information on an ovarian cancer chemo treatment.

So later today I have to tell the medical oncologist if I'm going for chemo or not.  Because of my circumstances, I could not have chemo and may or may not have a recurrence of the Cancer.  I could have chemo and still have a recurrence of the Cancer.  This is because there is less testing data on my type of cancer so treatment can be sort of a hope and a prayer (my words, not the Dr).

Originally while I was waiting to meet with the Medical Oncologist, I was thinking that I would do chemo as a precaution if it was offered.  Now I'm not so sure.  I'm okay with losing my hair and being sick for months even for an uncertain outcome.  My hesitation is because one of the side effects of this chemo is neuropathy in the hands and feet and sometimes face.  This neuropathy may be permanent.  I need my hands and feet.  Their full use is very necessary to my quality of life.

So right now I'm thinking that unless the blood tests say I still have cancer somewhere, I'll pass on the chemo.  I'll just find out about long term follow up.

What would you do?

[mollyc]

Also as a Public Service Announcement, my only symptom was severe constipation which never happens to me.  Because I was cautious about how many laxatives I was willing to take before seeing a doctor, I went to the doctor.  He ordered an x-ray to make sure there were no blockages in my bowels.  I don't know if he saw something on the x-ray or was going by experience but he told me that "Ovaries are sometimes stupid" and sent me for an ultrasound.  Which led to a CAT Scan which led to a MRI which led to blood tests which led to surgery.

Ovaries are sometimes stupid.  Be careful out there.

[busymom]

I'm so sorry you're dealing with this.  I had a "problem" ovary removed many years ago, and had to keep a strict schedule for monitoring any changes via a specific type of blood test for a number of years.


What sort of monitoring is this doctor planning to do?  Do you go in every 3 months, for example, then every 6 months, then every year if they find no changes?


I'm going to suggest possibly getting a 2nd opinion.  Do you have a Mayo Clinic near you, or another medical group that is "famous" for fighting cancer?


Whatever you decide, I wish you the very best outcome!  

[pulmonarymd]

You need to ask what the 5 year survival is with and without additional treatment. The side effects need to be interpreted with this in mind. Only you can decide if the improvement in survival iw worth the side effects. Having decided ahead of time before you get all the info is frequently helpful. Finally, you have to think about how you would feel if you decided against treatment now and you have a recurrence.

The less definite Oncologists are about the benefit of treatment means that consensus about treatment s not there, and is a situation where a second opinion can be valuable if you are undecided.

[CCL]

In so sorry you are dealing with this. For myself, I would do the chemo.

Can they tell you percentage of patients who are affected by the neuropathy. Is there anything they can give you to counteract it?

I agree with getting a second opinion, so you can get a better picture and know all possible options.

[jerseygirl]

Sorry you are going through this. I had colon cancer last year with surgery and immunotherapy but I’m well now with no evidence of the cancer.
Yes!! Get a second opinion at a big cancer center and if you can find a doctor that has experience with your type of cancer
Have you been given more than one type of therapy options? Some chemo and immunotherapy have fewer and milder side effects. There are many new types of therapies some even individualized to you and your cancer. Seems you don’t need a quick decision so take your time and discuss with best expertise you can find.
Wishing you the best outcome and calmness

[lurkyloo]

I am sorry to hear you are dealing with this.  Are you willing to share the specific chemo regimen they are proposing? 

I would also lean toward doing chemo, but I think a second opinion is a great idea.

[mollyc]

The type of treatment recommended is GOOVCATM.

A second opinion isn’t impossible but highly complicated. We have a cancer clinic in town where I can get chemo but the medical oncologists are based elsewhere. Mine is in Vancouver.

If they had a target, there are radiology oncologists in town.

[lurkyloo]

Okay.  That’s paclitaxel and carboplatin, with dexamethasone (steroid), diphenhydramine (Benadryl) and famotidine (anti-stomach acid) pre- or co-administered, presumably to counter immediate side effects.  You can look the individual drugs up.

Paclitaxel and carboplatin are both a bit on the old-school side, which for cancer drugs tends to mean pretty heavy duty.  I would take some time, do some reading and think about it before committing, since this is a preventative regimen.

Carboplatin is a newer follow-on to cisplatin with fewer side effects but not none.  I would guess giramomma might have some firsthand experience with one or both(paclitaxel/carboplatin, that is), if she is willing to weigh in.

[TheOtherMe]

[finnime]

I'm sorry you're facing this.

If it were me I'd face the complexities, get a second opinion and then decide. Cancer treatment is both art and science. They've come a long way even in the past 3 years. You may get the decisive info from further looking.

Best wishes. Let us know what you do and how it goes. We care.

[seriousthistime]

Jun 26, 2024 14:46:45 GMT -5 pulmonarymd said:

You need to ask what the 5 year survival is with and without additional treatment. The side effects need to be interpreted with this in mind. Only you can decide if the improvement in survival iw worth the side effects. Having decided ahead of time before you get all the info is frequently helpful. Finally, you have to think about how you would feel if you decided against treatment now and you have a recurrence.

The less definite Oncologists are about the benefit of treatment means that consensus about treatment s not there, and is a situation where a second opinion can be valuable if you are undecided.

Agree with the whole post, especially with the bolded parts. 

What a difficult time for you!  I'm so sorry you are going through this.  Chin up, and vent here as much as you need to.