July 1, 2009

Monday (when I wrote my last post) was my first really good day in the month since I’ve been diagnosed.  I had a plan, I felt hopeful, physically I was on the mend, etc.  I had an appointment with the general oncologist at the end of the day that I was so close to cancelling because I thought it was unnecessary.  But the fact that he is a friend of a friend (a friend who has moved mountains to get me the best care in the country) and that my husband is still working his way through these painful issues around pregnancy etc made me keep it.

And this is where it gets worse.

I sincerely hope none of you ever have to deal with cancer, but if you do you should know that cancer doctors are sub-specialized, and the one who takes care of you is someone who specializes in your kind of cancer.  For gynecologic cancers (cervix, uterus, ovaries, etc) it’s a gynecologic oncologist (gyn-onc), a very specialized field.  For some other cancers there are other sub-specialities too, and then the rest fall under ‘general’ oncologists – who deal with nothing but cancers, but not of the kinds that the sub-specialists take care of.  So my main doctor now is a gyn-onc, but this friend of a friend is a general oncologist.  So he knows cancer really well, but is not at all an expert in my kind of cancer.

What he said was that he thought I should have a hysterectomy, immediately.  That we were taking a big risk by waiting and doing the hormonal treatment, and that the idea of a pregnancy (and thus 18 months of waiting before a hysterectomy) was insane.  He didn’t mince words, didn’t beat around the bush.  He’s the only medical voice who’s been so clear with me, and he basically spoke directly to my deepest fears and scared the crap out of me.  I was so annoyed, I had left the house for the appointment feeling so good I was even wearing mascara – for the first time in a MONTH.

I do appreciate his honesty, and it’s been good because it forced me out of “obedient patient” to taking control again (and really, who are we kidding? I am about as far from a docile, non-challenging patient as you can get).

Bizarrely it’s helped with my husband – I guess because the doctor told him very succinctly and very strongly the facts that are behind all of the fears and thoughts I’d been having about carrying a pregnancy.  That aspect is good, because I think my husband is okay now with some of the other paths, and the doc did a good job of boosting my credibility.

He also made me second guess everything.  I’ve fired up all my networks, and will talk early next week with a US gyn-onc friend of the family (who I will also ask to put me in touch with a gyn-onc who is really experienced in fertility preservation), and I’ve also decided to go for a second opinion here in France (another expert doctor being arranged by my friend).  I also spent hours and hours researching clinical trials and medical journals and other scientific evidence in the field.  I skimmed hundreds of abstracts, downloaded about 30 trials, and started a nifty database.  I have the known facts myself now, and can help put what doctors say in perspective. This doctor we saw admitted he is not an expert in this field, but what he said about early erradication of all traces of the cancer makes sense, and

I didn’t get much sleep for the past several nights.  I’m still working through the shock of what he said to me – I haven’t been able to share it with my family or friends yet.  I am finding it so incredibly hard to give up the dream of having my own baby – the difficulty I’m having giving it up is making me wonder whether I’m holding onto it in an irrational way (a way of denying the disease).

In any event, tomorrow I am seeing another Gyn-Onc, in hopes of having 2 doctors telling me the same thing.  Keep all fingers crossed that this one says keeping my uterus long enough to harvest eggs is an option that makes sense.

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