Cancer Bugs Killed – Now what?

I don’t even know how to start this blog. I should be celebrating in the remarkable achievement of my chemo regime – according to a surgeon yesterday, my cancer has been “resolved” – as if it was a puzzle whose pieces fell into place and then disappeared. But, the matter of the next step has not been resolved – in fact, I am learning that there is an art and a science to even science.

I know that there are grey areas in life, but I am not good at living in them. This past year has been one grey area after another and at least with cancer I thought – black – target – achieve. Well, turns out that while chemo is black and white, and there is a standard of care, what comes next is almost a matter of personal choice. This seems ludicrously heinous after what I have been through and has made me more angry that I have been since learning this damn disease was taking over.

Here’s the issue – there are different schools of thought on what I do next. I had invasive carcinoma (read cancer) but because I had the giant reaction to the needle biospy, it is difficult to tell the original size of the “tumor” – probably around 2.7cm. I had an area of unusual tissue that was larger and that’s where the trouble comes into play. And, since I didn’t have a biopsy of my lymph node – and it is now normal – it is unclear if the cancer had actually spread.

There is agreement that I need surgery from the four surgeons I have seen. There is agreement that I need to take out the area where the cancer was (in case any cells might still be wandering around dazed and confused) but not on how to take them.

One doctor says I need more imaging, another mammogram, and potentially will only need a lumpectomy with radiation. One doctor says I should have the mastectomy on that side, followed by radiation, and then reconstruct at a later date. One doctor says I should have the mastectomy and it’s OK to begin reconstruction before radiation. And, one doctor says I can have a mastectomy but probably don’t need radiation.

This is the research project of my life. Everyone who knows me knows I want details and information, but I also have had implicit trust in the medical system. Until now. I understand that people can have different perspectives based on personal experience, but it’s difficult for me to understand that could exist on a stage of this magnitude.

Consider this: radiation has been shown to decrease the chance that cancer will come back BUT it also brings with it the side effects of issues with healing, reconstruction and additional cancer down the road. http://www.breastcancer.org/treatment/radiation/new_research/20120309.jsp

Here’s another: Benefits of radiation after mastectomy unclear: http://www.breastcancer.org/treatment/radiation/new_research/20100306b.jsp

But, here, a study shows that radiation may help if you are young: http://www.breastcancer.org/treatment/radiation/new_research/20111009.jsp

And, having a double mastectomy decreases my chances of having breast cancer recur but does not eliminate it. It all comes down to that lymph node. If it had cancer, I maybe should have radiation. If it did not, I shouldn’t. But they might not know that UNTIL my surgery.

I have scheduled  interviews, information gathering, and appointments over the next week to wade through this mess and determine the best course of treatment. Ironically, I will likely be making the decision of which doctors to use based on what I want to have done. Not them. And, I am learning, I am not alone in this – of my survivor friends over half had a similar issue at the end of chemo … The time when we should be celebrating the end of a  supremely dark period in our lives given over instead to complete anxiety about a decision that arguably should not be ours to make.

I am angry that this is my decision to make and that it is taking me away from my celebration. Dammit Jim, I’m a breast cancer patient not a doctor.

Yes I have cancer. really.

I vent a bit today about the medical system and the indignities that we suffer as a result of its lack of technology. Yesterday was not a fun day. It was awesome. And by that I mean the total opposite of awesome. I had both chemo and an MRI. Both of which are particularly tiring, and in combination made me a shade of loopy I haven’t seen since staying up all night for a case competition in the MBA program.

The MRI was particularly difficult because you are stripped – literally and figuratively – of all that you hold. First, because there is no set protocol for the “during cancer” MRI – you have to answer questions. A lot of questions. On the phone, do you have a history of cancer? No, I’m doing this just for fun. In the paperwork – five pages of what other tests have you had? Have you had chemo? Yes. Do you have cancer? Yes ( I already answered that three times before). Do you have any metal in your body (yes, the markers they put on the tumor).

Then, the male nurse – so you have cancer? Yes. (the fourth time now). And where is it? Look at the order. From my oncologist to image my breasts. What do you think?

The MRI is a claustrophobic inducing tube not much larger than and air duct. When you have a breast imaged you get to lie down in a superwoman pose with your breasts hanging down into a special “cavity”. You get an IV in your arm to inject the contrast die. And you can’t move for thirty minutes after they put you in the tube. Oh and the noise. I brought my own earplugs but the machine is so loud that it sounds like someone is blasting sound and air at you and top volume – randomly. At one point I was sure it was saying “Black light” over and over again so loudly that my body shook.

And, of course, being on taxol, everything falls asleep. My weight was balanced on my stomach toes and wrists and pretty soon the ends of superwoman were totally and indignantly asleep. To the point that they were shaking of their own accord.

The only thing I can say is that I am now an expert at counting to 300 by 3s although I was so tired and addled it took me most of the procedure to do it.

How is it that our advanced technology and information gathering systems cannot talk in the medical profession enough to allow me to no longer fill out forms that I have seen three times before? Why do I have to tell three different people about my cancer, about my tumor, about my treatment when it’s all in some record. Someone out there create a smart card that can store all that info on it so that we don’t have to squint at lines of text to see what we need to inform this new facility (yes, I have cancer, yes, I’m on chemo) …

Indignities abound in this journey. Why add more?