New Surgeon Required
Sorry, to use copies of emails instead of actually blogging, but I'm too lazy to repeat stories which are already old and boring to me.
My surgeon has basically given up on me which I find appalling, maddening, frustrating, and illogical.
Her point is that since I've found more lumps (which by the way don't show up in the MRI done on Sunday-- I ask again what the hell an MRI is good for if it can't even pick up tumours which are clearly larger than a pea!) the disease (statistically) will keep coming back therefore there is no point in removing them unless they cause me pain.
This is unacceptable to me at this point as I personally know of many who have only had local recurrences for years! And if I was at a major cancer centre in the U.S. they wouldn't hesitate to take these suckers out. Sure, chances are it will come back but a) it doesn't HAVE to as there are lucky people that deal with a bout like this and then something kicks in in their immune system and keeps the beast at bay for years , b) taking them out will at the very least slow down disease progression, c) it hasn't spread to organs yet so we must attack it where it is, d) um, every "treatment" offered once the disease has spread beyond the skin is not truly aimed at "cure" (because there is no cure) but in fact to "buy time" or slow down disease progression.
Maybe she has forgotten this or likes to believe that what she was doing up till this point was trying to cure me. Statistically, she wasn't going to cure me from the get-go. So why would she all the sudden throw in the towel now? Delay progession. Keep it at bay until there is a cure. Keep it at bay for as long as possible. I'm fucking worth fighting for. I could be the exception to the rule and no one on my team should give up on me until I'm dead. I personally know of people with melanoma that spread to the brain that had it removed and are fine. This is soooo exceptionally rare, but you know what? This is my life and I have to believe that I could be that exceptional case too and my doctors need to do everything they can just in case I am that person. They don't know.
There is no doubt in my mind that if she was me, she would have the tumours resected. The are in the armpit for godsake and they are relatively easy to remove. Of course she would. Because it would buy her time possibly. Apparently she had decided that I'm not worth the effort. But, because I'm a bitch, she's going to do it anyway.
Here' what transpired yesterday.
"If you are having more lumps, it is unlikely that local treatment such as surgery will be the best answer. It will only come back. MRI shows only one lump with some growth with local involvement of muscle but it is not seeing the small deposits. Local excision is only then used for the lumps that are symptomatic. I think that we should ask [Dr. Medical Onc] to reconsider systemic therapy....perhaps an experimental protocol? I think we should restage urgently with CT thorax/abdomen/pelvis to make sure everything remains localized. [Secretary] will call you with the appointment. It may be worth harvesting one of the lumps for that experimental protocol I was talking about but as far as I know we are still not using this for treatment. I will find out. For now we are keeping the OR date October 2 open for you regardless. I will be in touch."
"I personally know of people going for years only experiencing local recurrences, and while I know what my odds are, I also know there certainly isn't any benefit to leaving these in.Taking them out could slow down disease progression... and since I'm already booked for the OR I especially don't see why they shouldn't come out. Also, something is causing my arm and hand enough pain that I am taking T3's around the clock and can't type or write without the meds.If systemic therapy is indicated then it would not be aimed at curing, but rather slowing down progression. Just the same, I don't see why the tumours that are resectable wouldn't come out, sure they might come back, but it may buy me more time. I could understand if I had organ involvement why you wouldn't bother with the axilla, but as far as we know (as of July) I do not. Knocking on wood that next CT confirms this. I'm not a statistic, and removing these masses could help me. If I were at MD Anderson, they would be resecting and resecting until it became unresectable. Just my two cents. Sarah"
"That sounds like a plan. We will hold the OR time for you and do whatever we decide it is right at the time."
It's fair to say I don't have much faith in my doctors right now. I wish I were in the States (if i were insured of course).