Friday, March 29, 2013

(first) decision made

If I'm lucky it will be the last decision.  Since the melanoma on my arm was staged as 1B, I am going to have the surgical oncologist remove the larger area around the melanoma and also the sentinel lymph node(s).  Surgery is scheduled for April 8.  I will go early in the morning for the radiation study that will find the right lymph nodes, then surgery will be early in the afternoon and I will be home by supper time.  I'm blessed with insurance with an out-of-pocket limit that I will quickly exceed, so I don't have to worry about the cost of chosing the more significant surgery, just the recovery time.

Two reasons to decide to go ahead with the lymph node biopsy even though one surgeon said I didn't need it.  First is that removing sentinel nodes really is the current recommended approach for melanomas with depth greater than .75 mm and a second risk factor (mine was .83 and had a miotic rate of 1 /sq mm).  The second reason is a principle for making sense of low probabilities that I learned when I had CVS genetic testing with my first pregnancy: only do the test if the incidence of the problem you are testing for is greater than the incidence of complications from the test.  In the case of sentinel node removal, the chance of finding something is 2-8% and the chance of complications is 1-2% (both according to my doctor).  I am tempted to say that the chance of a benefit to me from this surgery alone is about 4% (calculated on the basis that I have a 5% chance of a positive node and an 85% chance that will be the only positive node).  The risk of significant harm is very low--most of the possible complications are short term.

I realized also why I am so resistant to going with the standard treatment.  When I was diagnosed with diabetes, I quickly found what would work for me.  At the time, the standard for well-controlled diabetes was an A1c between 7 and 8 and a low fat diet--I decided to join the community of tight control diabetics and keep mine below 6 by eating low carb.  It has worked wonderfully for me. I think the standard of care has since changed to A1c between 6 and 7, so the medical community has realized at least some of what a few mavericks and a community of patients reading the research literature understood 10 years ago.

When I started to research the melanoma decision I quickly learned that there is no good treatment for melanoma that has spread and the standard of care does not have much to offer.  Neither of those hit me as a big surprise.  My husband's illness (Multiple System Atrophy, a form of Atypical Parkinson's) has no treatments that actually slow down the disease, they only relieve symptoms.  And my own experience with diabetes was with realizing that the standard of care was lousy.  So I jumped right to looking for an alternative to the standard of care, but it is harder to take those kinds of approaches with cancer because the risks are so much higher.  Thankfully, there is a good chance that after this surgery I will have done all that I need to do.

Tuesday, March 26, 2013

difficult decision to be made

I made a change and lost the text of this page, so I have rewritten it.  The information is pretty much the same, but I have tried to say it more clearly.

I had a mole removed two weeks ago and it turned out to be a melanoma of depth .83 mm, Clark level III, and mitosis rate 1 per sq  mm--which adds up to stage 1B.  That is a little more serious than the stage 0 ones that some people are lucky enough to catch, but there is a good chance that I caught it before it spread.  The dermatologist took it out with clean margins, but the standard treatment now that the test showed it to be a melanoma is to take a larger margin and maybe check a lymph node or two.  I got two opinions, one from a surgical oncologist and the other from a plastic surgeon who has removed melanomas from several friends, and the two surgeons disagree on whether it is wise to remove and check the sentinel lymph node(s).  I'm going to try to lay out the information as a narrative in hopes that it will help me make the decision.  I'm not looking for advice here, but I would welcome comments about what you would do if it were you, and why.

I saw the plastic surgeon second but let me describe his plan first because it is the simpler one.  He would do the procedure in his office with local anesthesia--lower risks there.  He would remove skin and fat down to the membrane over the muscle in a circle giving a 1 cm margin around where the melanoma was removed.  He would cut a triangular area of skin  and rotate it to cover the hole, and sew that in place and sew together the triangle.  He consulted with three surgeons and oncologists, all of whom said I didn't need lymph node testing because the melanoma was less than 1 mm deep.  His plan is on the left (he marked my skin with something that wore off more quickly than Sharpie so I have drawn on the picture to make his markings visible).

The surgical oncologist (drawing on the right) would make the same cut around where the melanoma was, then cut points on either side and stretch the skin together over the hole.  He strongly recommends removing one or two sentinel lymph nodes; he says I have a 2-8% chance of a positive node.  If I do, 84% of the time no other nodes are positive, so just removing one or two is significant treatment.  He says when he does the procedure it has a 1-2% complication rate.  He prefers to do the procedure with general anesthesia but has agreed to do it with deep IV sedation with propofol.  It is more serious surgery than what the plastic surgeon proposes, but very unlikely to cause long-term problems.

So why not play it safe and have the sentinel lymph nodes removed?  The key reason is that research has not shown it does much good.  It is part of the standard of care in the United States, but the best study showed it resulted in only a statistically insignificant improvement in survival rate.  Some argue that is because only 16% of the patients in the study had positive lymph nodes, and for those who did, treatment improved the outcome only by 10-15%, so the group benefiting is too small to be statistically significant.  But that still says the benefit is very small. The oncologist argued that sentinel node biopsy was worthwhile treatment if it removes cancerous nodes because 84% of the time the only cancer is in the sentinel nodes.  But the best research doesn't show that it improves survival, only that it is useful for staging.  (summary of the research)

My current view is that if I had a positive lymph node, I would not do further treatment.  For stage 3A (microscopic spread to 1-3 lymph nodes) the 5 year survival rate may be as high as 85%  (figures vary quite widely).  The standard treatment is removing all the lymph nodes, but 84% of the time no other cancer is found (it was only in the sentinel nodes).  That treatment causes lymphedema and nerve damage and improves survival by 10-15 percent.  In other words, without the treatment the survival rate would be 70-75%, with the treatment it is 85%.  The other standard treatment is high dose interferon alpha for a year, or as long as the patient can tolerate.  Side effects are feeling like you have the flu, serious depression, and autoimmune diseases, with problems continuing after treatment ends.  Current meta-analysis of studies this treatment do not show any benefit in overall survival.  I don't see losing that much quality of life for a very small reduction of the likelihood of the cancer coming back.  I wouldn't see it as giving up; I would see it as I've got a 75% chance of survival if I don't do anything, it isn't worth long term problems and/or a year of misery to increase that chance a little bit.  I raised my views with the oncologist and he said that he would still follow me if I refused treatment.  But I clearly wouldn't get any support; he would keep telling me that it was his job to recommend the standard of care (at least until there are results from the next big study, which won't be until around 2020).  I can just imagine how confidently he tells people that if they follow his plan they have an 85% chance of survival.  I bet he doesn't tell them that if they do nothing they have a 75% chance of survival.

I don't like either doctor, which is not surprising when dealing with surgeons.  The cancer specialist was arrogant.  He wasn't the worst, he was willing listen to my preferences if I stated them clearly.  But it was clear he would keep recommending standard practice, not support me if I decided on something different (even if I could argue for my choice from the research literature).  I do worry that once I enter the cancer specialist world I will get sucked into overtreatment. The plastic surgeon was the type who reacts to knowledgeable women by playing dumb.

The surgery will be April 8 with the oncologist or April 12 with the plastic surgeon.