1/1/09

What I Did On Winter Vacation

After the PET/CT scan, I got a call from my surgeon in the early morning, informing me that she had canceled the surgery because the breast cancer had metastasized to my right femur and left ilium. She said she couldn't explain the bone cancer any more, that she was basically just a mechanic, but that we would want to use the breast tumor as a way to check to see if the chemo was working. Then she hung up.

The cancer navigator wasn't in all that day, and none of the other navigators there answered their phones, either. Nobody returned my increasingly frantic messages until late the following morning, when my cancer navigator called to tell me that she had made appointments for a biopsy and blood draw and oncology appointment (see earlier post re this), and told me about the possible reproductive organ involvement.

I talked to the oncologist on the 29th. Not happy with the man himself - to say that he was condescending and uncommunicative and closed off would be an understatement. I won't go into details, except to say that he gave us his two treatment plans for breast cancer and the only information he would give us on side effects is "Your hair will fall out and you will be tired, you will go into immediate menopause." When I asked about my multiple chronic infections and whether these would be a problem with the chemo, he admitted it would, but when I asked if these should be treated first, he simply replied in the negative and would not explain further.

Well, that is NOT an adequate explanation of side effects and expected outcomes, especially with a patient who is asking questions and who specifically asks about Quality of Life vs. Quantity - esp. one whose life expectancy according to said doctor is "1 or 2 years, maybe 3."

And it was only THEN, as he was telling me that he was ordering an MRI study of the spots on my hip & femur, that he let slip that the previous scans were odd, because there didn't seem to be any lymph node involvement at the time of the scan. He also said that keeping the breast tumor (which has now been compromised by the biopsy and is gleefully shedding malignant cells into my system) was more for psychological benefit of patients, because they felt better if they saw that their breast tumor was shrinking.

Now, this is a LITTLE bit important to know, since the surgeon had canceled the surgery without telling me all this, and without asking me about MY preferences on the matter. And that information would have made a difference to my choices of treatment, as having had a separate and independent cancer in the past, I think the lymph node non-involvement was significant to the possibility that these are separate independent cancers rather than metastasized cancer. If none of them had metastasized to that point, then treating them in order to shrink them or changing my body's environment to cut off growth factors could actually significantly prolong my life; if they are metastasized, then I have other cancers landing and growing in all sorts of spots all over my body, and the prognosis is more grim. Instead, I have perhaps lost my window of opportunity to get rid of the tumor before it got to my lymph nodes.

It's not that any of that is a sure thing, it's that they didn't bother to give me the information I could have used in order to make the decision for myself - a decision that is crucial to MY life, not to theirs.

Would THEY want to be treated this way, if they were in my position?

9 comments:

Glorious Hats said...

Argrugh! It is indeed frustrating. Are you printing this out and sending it to each navigator and dr?

Is there any way for a second opinion or different set of care providers --- ahhh hemmmmm, I mean a way to find CARE providers? People who will count YOU as a team member in fighting YOUR cancer.

Navigators, not hardly - misdirectors, poor mappers are better names; maybe they need a Garmin :)

This obviously makes me very very angry. So am going to shut up now.

Except to send you my love and will continue sending you good thoughts and will spend a few minutes visualizing your cancer shrinking each day.

Hugs,
Jane

The Violet Hoarder said...

I've not been where you are right now, but I've had very similar experiences. You need to go with your gut on this--if you think you need a second or third opinion, GET IT! Yours sounds like quite a complicated case and the more opinions the better. Find a good oncologist (I've heard Burton Schwartz is good; I've gone to MOPHA, they have good oncologists, too), go to Mayo, do whatever you have to do. Don't wait and don't hesitate. You have NOTHING TO LOSE and much to gain. I think this non-lymph node news is positive stuff. But you're right, you need to understand even the subtleties of your situation, not just the broad strokes they feel like sharing with you. You have every right to be angry about the way they've treated you. But you have control over which doctors you end up being treated by--don't settle for something your gut tells you is inqdequate or wrong. Go girl! You'll feel so much calmer if you're confident in your doctors. PS--Happy 2009 and set your sights on 2010!!!

Laughingrat said...

This strikes me as a real injustice. I'm so sorry. Is it possible, or useful, to find another battery of doctors? I hope they aren't all so d*** condescending.

Amy said...

What is it with cancer specialists that they are so heartless? 18 months ago, a close friend had surgery to see if a mass in her ovaries was cancerous. The surgeon told that if the surgery was under two hours, it was benign; longer, it was malignant. The surgery lasted almost four hours. She was back in her room by noon--but the surgeon didn't come to see her until almost midnight. You can imagine how frantic everyone was. Turns out, as he put it, she was the only good news he had to deliver all day, so he saved her for last. Well, bully for him, but geez. How about the patient's emotional wellbeing put in first place over the surgeon's??

Dori Ann said...

Unfortunately, I think because of their profession, they wall them self off and become as In Human as possible, which in turn makes them very un qualified to treat the people they do!
It is absolutly neccessary for you to get in touch with the best you can find. I know sometime it is easier said than done, but like the first comment said, you have nothing to loose and everything to gain! I am so sorry for the extra stress and the inconsiderate treatment at a time like this. This does sound like a glimmer, well worth persuing as best you can!
You in my daily thoughts and prayers.

prayer bedes said...

I continue to keep you in my prayers every day. It sounds like everyone needs the gift of wisdom right now.
Love and Hugs,
Christine

Nancy K. said...

Hey Eileen,
Just a quick note to let you know that you are in my mind, my heart and my prayers, daily. It makes me sad that people can be so thoughtless and seemingly uncaring to someone in such a traumatic situation. I wish I could help.

Wanda said...

Eileen,

I think you need to follow your gut instinct. A second or third opinion cannot and will not hurt. I have never heard of navigators before, but I think they are following their own best interest not yours.

I will keep you and your family in my heart and prayers.

Wanda

Dawn said...

Hey, thinking about you and hoping your getting some more answers.