Sunday, September 10, 2006

Boring details and random tangents

Blah. Bleh. Tired of this, but I can't be.

Edited to add: This entry ended up being very long and dry. It's for me so I have a record of my thoughts on all this. Seriously, unless you want to torture yourself, don't bother reading this entry! At least not in one sitting!

Ok, so Friday. Friday, saw my surgeon. She apologized for telling me through email, but not for the delay. She says she was going to call me this week. Um, she should have called me a month ago. Whatever.

Turns out she (the surgeon) fucked up even more than that. This is kind of confusing to bear with me.

When I found that pea sized lump in my armpit in June, they did an MRI. The MRI confirmed a mass was present and the MRI report (which I finally saw for the first time on Friday, along with the path report from the excision) stated where the mass was located, and the size. The mass found on the MRI was about 2.5 centimetres round, as opposed to the small pea I was feeling and that my surgeon felt. Do you see where this is going?

Because we all felt a pea beneath my skin, my surgeon took that mass out. It was a recurrence. BUT, it was not the mass that showed on the MRI or the mass that was referred to in the MRI report. My surgeon took out what she felt, but obviously did not look closely enough at the MRI imaging or the report. If she had, she would have realized (and eventually did...) that there were in fact 2 masses that needed to be removed. One that was on the imaging, and one that was not (the pea). Just in case you are wondering, this mystery 2.5 centimetre mass is NOT the second mass that we were previously concerned about which turned out to be just scar tissue. Nope, I have a whole other tumour, have had it apparently for months, could have had it out in July, but there it is, still inside me. Neither of these showed on the CT scan (um, what are CT's good for exactly?) and only the larger one showed on the MRI. Crazy.

So, my surgeon admitted that mistake, but was not overly apologetic. I can sort of see it from her point of view. In her mind, this was a blunder, but the chances of it being a fatal blunder are very slim. A couple extra months of this thing being in me is probably not going to make a difference in whether I live or die. It does make a difference to my sanity though. I know that sounds surprising to people reading who are not that familiar with certain aspects if advanced cancer. Certainly, it is better to get these tumours out than to leave them in, but statistically speaking, a couple months delay in removing these suckers when they aren't in an organ or strangling an artery is unlikely to affect a person's overly survival. Statistically. On an individual level, of course it could theoretically make a difference. But, there is no way to ever know or to be able to measure that. Much the same way as, statistically speaking, my prognosis is shit. Take a 1000 people with stage 3c melanoma and they can tell you what percentage will be dead within 5 years and 10 years. It's not pretty. But they can never tell me that I won't be one of those people that will be alive in 10 years. Because there are some that are. There is no way of knowing what will happened to me. And that is why there is ALWAYS HOPE!

Anyfuckingway, what now?

I wait for another MRI date. I will harass the hospital on Monday and not wait for them to call me. It has been requested by my surgeon as "urgent". Based on past experience, that means the soonest I'll get the MRI is in 2-3 weeks. Backlog.

I will have another operation. This time (as with my first 2), I will be completely under and likely stay overnight in the hospital. I'll be sore. My arm is going to get fatter (lymphedema) and my range of motion will get even smaller. One day I should post pics of my armpit and pics of me trying to raise my arm over my head or put it behind my back. Ain't pretty. But, at least I still have use of it. I can still just reach my head to wash my hair! But I digress. Also based on past experience, my OR date will likely be in a 3.5 weeks to a month. That's the backlog for cancer surgery. Nothing new or surprising. It's the same for all cancer patients and has been the same in London and Toronto for me.

After that, there is talk of me entering a trial which I am mighty intrigued about and a bit miffed as it has not been mentioned to me before. I have to talk to my medical onc about this because it is possible that my surgeon is a bit confused. Usually, the trials start for my kind and stage of cancer in Canada when you hit stage 4 (distant mets or organ involvement) OR you have an unresectable (inoperable due to location/complications) local tumour. But so far I have had all resectable local recurrences. Knock on wood.

If I was in the U.S. there would be many a trial that I qualify for and have qualified for. Not as much going on by way of research up here because we a) don't have the money, and b) don't have the patients. For those of you who have taken a statistics course, this makes sense, for those of you who are scratching their heads, just nod and smile. Makes more sense to wait for the results that come out of the trials in the U.S. for my stage and my cancer anyway.

Now, you're wondering why I don't go to the states for a trial. Trust me, I've thought about it and came to my decision back in January. It doesn't make sense for me to do that. It would cost me out of pocket for travel, consultations, blood work, scans, appts. with the US doctors. In a trial, you are monitored very closely. They would want frequent scans and probably appts with me to check in possibly every week depending on the drug involved. I could maybe get my scans and bloodwork done here and send that stuff to the States so I didn't have to travel for those. But I would still have to pay for them because they would be above and beyond what OHIP (Ontario Health Insurance Plan a.k.a. Socialized Medicare for those of you outta province/outta country readers) is willing to pay for as part of my disease protocol. Factor in that there HAS NOT been a significant advance in the treatment of advanced melanoma in, well, ever, or 40 years or something, then I'd pretty dumb and naive to spend thousands and thousands of dollars to join a US trial at this point. For me to actually hit on a trial that turns out to be the one is probably less likely than me winning the lottery next Friday. I'll save my money thank you.

My point was, before I struck another tangent, that I am very keen on this trial of which my surgeon speaketh. It would be free to me and I have nothing to lose. I don't know anything about it (yet!) except that if I do qualify (which I am skeptical about because of my stage 3 status and not stage 4) they will take part of my tumour, extract some lymphocytes which are the good "killer cells" and try to grow more. Then somehow or other through hocus pocus scientific stuff I don't understand (yet!) they will put all these lymphocytes back in my body and hope that gives my body the extra umph it needs to fight off the disease for good. Sounds interesting. Hey, it's something!

I'm also going to look at radiating the area again. This would be after I'm completely healed from the surgery. Last time, radiation wasn't recommended and I didn't want it again anyway. But I've been thinking about it more and talked with my surgeon about it and damnit all, we might just try it again.

My thinking is this towards radiating the local area:

Radiation in my disease does not increase overall survival statistically. What it does do is reduce the chance of recurrence in the local area by 80%. That's confusing. Basically what that means is, if you are fated to die this isn't gonna help you as the disease will just show up in another part of your body. But they can't predict who is fated and who isn't.

Now, I was radiated to my axilla (5 days/week for 6 weeks in Jan/Feb 2005) and this statistically should have meant that I would not recur in my axilla. I did though, BUT, even though the recurrence was still considered local, the tumour was about a centimetre OUTSIDE the field of radiation. Interesting. When the surgeon removed the tumour, she went through the same excision (scar by that point) from the removal of my first tumour and pulled the 2nd tumour through the area that was radiated and out of me. Then, I recurred in June back in the radiated area. Is it possible that as she was pulling the tumour out, cells broke off in the previously radiated area, once again infecting the area with melanoma? Yes, it is possible.

It is also possible (but admittedly unlikely) that because my body has now has had 4 tumours appear in the same local area and no where else in my body that my body is doing a fabulous job of not letting the disease spread elsewhere. MAYBE, just MAYBE there aren't any rogue cells travelling in by way of my blood and lymph fluid searching for that perfect place to set up shop and grow lethal tumours. MAYBE, just MAYBE all the bad cells are still local and have not travelled. So, I radiate the area AGAIN, this time a bigger area, and hope that it kills all the melanoma cells left behind and that none have already escaped to other parts of my body.

It just occurred to me that some people reading might be wondering why they can't just do some test to see if there are cancer cells in my body. There isn't such a test. I know, I always thought cancer would just show up in blood. Nope, imaging such as CT scans, Xrays, MRI can usually detect tumours depending on where they are/how big, but just because you don't have tumours doesn't mean you don't have microscopic cells floating around looking for a place to hide and form tumours. That's my layman's explanation and about the extent of my understanding of this crap.

That's why taking tumours out does not necessarily give a person the mythical "all clear". Depending on where the tumour was and other specifics of it, they can tell you what happened to a percentage of others in your same situation. Like with Sheryl Crow. She had stage 1 breast cancer in-situ. It was caught very very early because she was very very lucky. Statistically something like 95% of people in her exact situation won't recur and they gave her radiation just to be extra certain. She is really lucky if she is indeed in that 95% and because she likely will be, after a few years recurrence free, doctors will consider her cured if they don't already now.

Back to me and my radiation.... I have to have some serious chats with a couple radiation oncs before the final decision is made. Radiation is never fun. It is going to be especially unfun to have it twice to the same area when the tissue will have an even harder time healing and I am still healing from nerve damage from last time which I won't even begin to describe except to say, holy fucking bitch and ow. Radiating twice will mean more damage. And more lymphedema (fat arm!). Is it worth it? Statistically, not likely. Individually, maybe. Tough decision ahead.

Phew. That's it for now. Just wait for O.R. date, then figure out trial and radiation. This whole process (if radiation is going to be involved) will not likely be over until Christmas!!! At least I sort of know what to expect because I've been through it all before.


At 7:36 AM, Blogger Carver said...

Hi Sarah,

Whew, what a mess! I think it's amazing that you are as calm as you are and methodical as you are in terms of considering your options. That seems like some big time blunders. I know what you mean in terms of it not being likely to make a difference (at least statistically) in your prognosis whether they got it out then or now but it sucks big time. I am truly sorry and will be sending out good thoughts not only for your surgery to go well, for you to get into the Canada trial if it's the best one for you but also for your doctors to get their act together. Jeeez.

As ever, Carver

At 8:39 AM, Anonymous Anonymous said...

Check out this link... it may have a bit more info than you already have - I manage clinical trials - if you have any questions you can contact me if you like...just let me know

At 11:21 AM, Blogger Sarah said...


thank you for thinking of me. i don't believe i would qualify for that trial though. it is for stage 4 or stage 3 with UNresectable disease. fortunately for me at this time my disease has been resectable. that is the crux of my problem. i am in disease limbo, sick enough that i need some sort of intervention, but not sick enough to qualify for trials! it is so frustrating!

At 1:59 PM, Blogger Andrea Pittsburgh Pennsylvania-412- said...

God bless you and strengthen you to beat this.


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