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Tuesday, June 24, 2008

Garden yesterday and melanoma LND

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.

19 comments:

the donG said...

i admire you for volunteering yourself to help out people with melanoma.

Jocelyn said...

Your mockingbird made me remember the one that lived in my front yard and used to swoon down on my Dad's head. We never could figure out why the bird was so intent on my Dad and ignored the rest of us.

Nice to see you bringing your well-thought-out ideas on LND here. It's a tough one.

ev said...

these are amazing shots!i love the birds.

thank you for your aim to at least ease the sick ones' illness or could be more through your researches. may you continue to inspire!Godspeed.

jmb said...

I hope your post is helpful to someone Carver, should they need it. As always your photos are wonderful, especially the red in the sky.

the teach said...

All your shots are so beautiful, Carver! Would you mind me putting someone I know very well in touch with your blog?

AscenderRisesAbove said...

I found your photo re: the bird in the tree very deja vu as that is what I put up today too. It took me awhile to find him hiding up there. I posted this lovely poem with it because it made me feel very meloncoly about being lost in the woods and looking up and finding a bird seeing you there. He is a wonderful poet from chile...
anyway; I answered on my blog but wanted to say here re: the tiles...
Carver; Thanks for your notes. I don't know why I was so reluctant to say prices; I was worried about doing it properly. Then some kind folk pointed out that to not say what I was asking was a real turn off so I have been working a bit on descriptions, the reason that I do a piece a certain way, some of the history of some of the pieces and the prices. It has been very helpful to actual work through that process.
Anyway; I wanted to say that I am working through some issues on my blog and I still have about ten tiles that I have not put up yet; working through some glitches first and then reposting some unsold pieces again without the glitches - that should take a week or so; then there will be the posting of the new pieces - another week and a half. I plan on adding a page soon which will have the unsold tiles on them so it won't take so much work to dig through them all to find out which are sold and which are not. It should make a much smoother process for those considering buying to make the choices.
I am not putting these in my etsy store as I think that etsy isn;t a good choice for them; I will only sell them on this page and on the soon to be added extra page off this page. I also add them to a site called Marketplace Daily Art in the left hand column, listing the ones that I list here. I will probably use etsy only for things like cards etc. I have found through trial and error that etsy is only helpful for me on a small amount of product.
As always I appreciate your kind words and comments. It is words like yours that help me get out of bed and look forward to creating and trying something new and different. So thank you for your never ending support!
Jacque

DeLi said...

all the best to you always Carver. All the best!

and super macro shots. i can imagienmyself in your secret garden

Carver said...

Hi Don, Jocelyn, Ev, and JMB, and Deli, Thank you so much for your kind words.

Hi Mary, I emailed you but please do feel free to put the person you know in touch with my blog

Hi J (Ascender), I appreciate your comment and I think it makes sense to list your unsold tiles on a separate page. I can see that the Etsey store is better for cards etc. I'm never sure about commenting so I appreciate your kind words. I enjoy your work so much.

Theresa said...

I know my sister-in-law had an on-line support group when she went through her breast cancer- Sometimes people just need to connect with someone who understands what they are going through- It is nice that you are so helpful to others.

Yolanda said...

You are a special person. I would love to have some of those tomatoes.

Dee said...

Heya Carver,
You know, your blog can be whatever you want whenever you want, so if you need to get some things off your chest (like saying you're not a medical professional) and then recapping everything that happened with you LND, then go for it. I think it's healthy. Also, it can be really really helpful for someone else out there. Blogs, though, are as much for ourselves as for other people.

I saw your comment on my blog - are you going to post your mandalas? I need to get cracking on the July one .. . and bug Jeanne and NYC Jeanne who both agreed to do one. Would love to see what you've done!

Save "our" Earth said...

th bird on the fourth picture looks like an orange cheeked waxbill..

Ciao,
David

Carver said...

Thanks Theresa, I'm glad your sister in law found a good online support group.

Thanks Yolanda, I wish I was close enough to give you some of my tomatoes. I have a bunch this year and although they aren't ripe yet sometimes I make gratins with green ones.

Hi Dee, I agree with you about blogs being for us. I know mine has been therapy of sorts for me. Just getting it all out helps. I already emailed my mandalas and will do a post in early July.

Hi David, I think the bird in the 4th picture is a baby cardinal. I may be wrong since it's about 1/4 the size of the adults but since I know several nested in my yard and it has some similarities to the female cardinal that was what I was thinking. I'll have to look up the bird you mentioned. I'm not familiar with it.

Summerbead said...

Carver,
Without a doubt, you are the best! :)
Thank You for your continued support.
I love all your information and your photographs are stunning.

Save "our" Earth said...

Carver,

it's some kind of finch,
though I'm not sure if this particular specie resides at your place. Try looking for some photos.

Save "our" Earth said...

oh, I forgot, baby cardinals are almost as big as their parents and they don't have orange cheeks, they have crests and also has darker feathers.
Orange cheeked waxbills have paler feathers, orange cheeks and they are elusive and timid so they are not often seen. they are small, probably 4" in length.

Carver said...

Hi David, I looked it up and you are absolutely correct. The orange-cheeked waxbill is native to where I live on the U.S. east coast and it does look like the one I was photographing. What threw me off is I have a lot of american goldfinches and a finch with a solid red face and speckled brown body. I knew those were finches but this one kind of reminded me of a small cardinal. I have a ton of cardinals so that's good to know that they are almost as big as their parents. I'm sure some that I thought were adults were this years babies.

Save "our" Earth said...

I know my finches, lol
finches are my favorite birds so I can't be wrong about that picture

BTW, do you know wifespeak? She's my mom :)

Carver said...

Hi Becky (Summerbead), Thanks so much for your support and kind words. You are very much in my thoughts. As ever, Carver

Hi David (save our earth), I have been to your mom's blog. It's so interesting how there are so many generations blogging.