Note - If anyone is here for wordless Wednesday, my post for that is at Carver Cards.The photographs in this post were all taken yesterday. The mockingbird youngster above totally cracked me up because he was making a sound like a baby crying. The adults will imitate cat sounds if a cat is near by, or make other ferocious sounds. The young ones can literally sounded like a baby calling for its mom or dad. On another subject, I've been thinking lately about a couple of issues relating to the practice of doing a complete lymph node dissection (LND) for melanoma patients who have a positive sentinel node (SN).
I have a lot of information on my sidebar about melanoma and a friend set up a site, Melanoma Resources, which has her links as well as mine and other patients. I was doing some searches and my blog kept coming up so this might be a good time for me to repeat that I don't have a medical background. Having my blog come up in searches for melanoma, and in particular for the LND, is a little scary. I'm fine with it when it brings melanoma patients who want to talk to other melanoma patients. People should feel free to email me, if they have questions or want support. I do think it's important to say that my perspective is as a patient not as someone who has a medical background since I don't have a medical background.
One issue I've been thinking about is how much information patients should be given prior to having an LND about possible side effects and about care which they may need. I know that I wasn't told about the possibility of lymphedema, loss of sensation in surgical area (inguinal groin nodes were removed as well as adductor and node of clouquet), nerve pain, and in a minority of patients ongoing chronic pain. In the U.S. there doesn't seem to be a standard in terms of what patients are told. I can see an argument in favor of different ways of handling pre-surgery information. You don't want to scare someone about side effects they may not have but then again I think it can help to be prepared. I know it took a while for me to get physical therapy, lymphedema massage, and other care my insurance covered where some people are automatically told that they will need that. I am not criticizing my care. I did receive the help I needed and compared to some patients whose stories I've read or who I've emailed with, my melanoma clinic and other doctors were very supportive.However, after three years of researching melanoma and finding handbooks like the one Roswell Park has online, which include tips on lymphedema prevention, and covers other subjects that would have helped me, I often feel like all cancer patients should have access to information like that. It didn't occur to me to go online and research those types of issues prior to my surgery and most of the information that would have helped me wasn't found until it was too late. However, on the flip side, when melanoma patients find my blog and get in touch with me to say that they are getting ready to have a groin LND and their doctors haven't told them about any of the possible side effects, I worry about them being unnecessarily frightened about problems they may never have. I try to steer people to sources which mention possible side effects but are also clear that not everyone has these side effects following surgery and the ones with permanent side effects are often in the minority, depending on the issue.
Some loss of sensation is certainly common following a groin LND, but widespread chronic pain like I have only affects a minority of patients. Lymph backup above the knee is very common following the groin dissection but permanent lyphedema that can back up in the foot is less so. Short term nerve pain is common but permanent neuropathy is less so with the surgery alone. It also depends on which basin has the lymphectomy. I do think that a concise standardized handbook which all patients have access to prior to surgery would be immensely helpful. It could spell out how many patients are statistically likely to encounter various side effects and there could be a standard protocol for follow up care.The other issue I've considered is the practice of doing a complete LND if the SNB is positive. In the U.S. there have been studies into this issue and I notice that there is an ongoing study which is looking into whether to do the LND when the SNB is positive or to have observation and not do that surgery unless the patient recurs. The LND wasn't presented to me as optional when my SN was positive, and it is standard of care at this point in the U.S. to do a complete dissection in that situation. Therefore, I don't have a problem with the fact that I was told I needed to have an LND. However, there are patients who go to doctors that don't advise the LND and suggest observation instead. I can see the argument both ways. One issue I feel like gets missed at times is that when a patient like me has a complete LND following a positive SN and doesn't have any further nodes with melanoma, that doesn't mean that some of those nodes didn't have a small amount of melanoma that would only show up with the special and expensive testing they do on the SN. The point is that it wasn't necessarily an unnecessary surgery because there could have been a very small amount of melanoma is some of those nodes but once they are all out it's not necessary to do the types of tests they do on the SN. They do look at them under a microscope and gain some prognostic information based on how many nodes have macroscopic amounts or microscopic amounts of melanoma. Clinically involved nodes carry a somewhat worse prognosis then macro nodes and macro is worse than micro. However, some of the nodes if left alone and not removed surgically, may have had a minute amount of melanoma or even a few cells that were cancerous. Therefore, the argument that it's a waste to have removed them just because they are negative for the tests which are done on a big batch of nodes isn't accurate, from what I've read.
I certainly have ended up with a long post without saying much that I haven't said before in some shape or form. It has been some time since I've had a post like this. I started this blog to deal with my melanoma diagnosis and issues following surgery as well as a few recurrence scares. Now that I'm 3 years out without a recurrence, my blog is more about my photographs, garden, and life in general. That is good but every now and then I start thinking more about the cancer crap and I thought I'd get some of it down here.