Posted by: cg00n | April 28, 2008

From the mail bag

Time to dip into the mail bag and share some of your own thoughts and words with you.

Many people have written in with words of encouragement, suggesting that things may not be as bad as they sound initially. Mr. R.J. of Calgary writes:

there is rapid progress in treatment of cancer, so much so that
survival statistics are out of date as soon as they are compiled. I have
personally known five people who have survived various cancers in the past
three years. All of their cancers would have been regarded as invariantly
fatal ten years ago. In the same period I have had no friends or acquantances
die from cancer. All five survivors are living normal and active lives again

and Dr M.W. of Calgary adds:

I do know of two people who have successfully beaten melanoma, so it is possible.
I sincerely hope you are the third.

Ms. K.R RN of Halifax comments:

I am an optimist from the word go and other than you may not be as pretty as you once were, there is always hope for a cure.

It’s a good thing prettiness doesn’t figure into it at all IMHO. Meanwhile, on the subject of pain control we have two great minds at work. Mr. R.K of Calgary suggests:

Medical marijuana! Look into it.

but Mr. M.D of Nanaimo cautions:

don’t take the government stuff, get the locally grown stuff if you can. The government deliberately grows low-THC (and thus less effective) varieties for some odd (but understandable to a cynical conspiracy theorist) reason.

Of course, one has to pick one’s advice carefully. Ms. D.M of Gibson’s Landing tells us:

You are about to enter the awful world of cancer advice, spiritual cures and heartfelt testimonials. Having watched friends go through some of this, I can say that Sturgeon’s rule definitely applies.

The advice from Mr. D.G of Seattle clearly falls into the 10% not covered by Sturgeon:

Those whom I have met who beat various cancers were usually “bad patients” – always asking questions, always trying to figure things out, and never giving up.

He is echoed by Ms. K.S of Glossop (UK) who describes her mother’s experience:

She said, and has told many others, that her surgeon told her that the key to beating it was to be positive. She was absolutely determined that it wasn’t going to beat her…she was angry that she’d got it and was totally determined to fight. And she did.

And she won, indcidentally. A very useful (and long) technical overview arrived from Dr. E.E of Barrie:

I would say cautious optimism is reasonable at this point, until and if such a time as tests prove otherwise. Unless the tumour has already gone to your lungs, which is unlikely and which you would probably already know about inside, we’ve got some time; if it has, things could progress very rapidly but the advantage to that is you are so busy dealing with practicalities that you don’t have time to be depressed. We will assume it hasn’t.

I am thinking that it is promising that you have had this thing for years. The caveat to that is if you noticed a sudden change lately – that is, why did you get it taken off now? Because you were just tired of it, had finally listened to the Cancer Society, or because it had gotten a lot bigger lately or was suddenly hurting? If it has been there for years but was just grumbling along, it suggests that it has a low biologic potential. Melanomas are odd things, and are extremely unpredictable. Sometimes they can go like wildfire. But sometimes they can be the opposite. The kind that you look at under the microscope and can’t figure out why the patient isn’t already dead, but they just grumble along. Every doctor has a patient who should have been dead long ago, but just keeps popping up nodules all over his body, this gets excised, then he goes on another few years in perfect health. No-one knows who these ones will be – so far, there don’t seem to be any good predictors which tells the physician how it will go. But I honestly think that because it doesn’t seem to have done too much so far, that is a pretty good sign to counter the thickness.

The next point is that the foot is a long way away from critical structures. Unfortunately, it is also an important structure itself, and you might run into local difficulties in mobility. Fortunately, it is the heel and not the toes, so your bicycling will be less affected and you can put your weight more on your toes when you walk. There is a relatively worse prognosis for extremity melanomas, if I recall, but this usually has to do with the stage at which it is found, and you are already in that category so this can be discounted. Again, if this tumour is slowly growing, as it seems to be, it may have difficulty spreading. And that being the case, it is a long way from the foot to the liver and lungs, which are the important parts in all of this. Yes, it will go first to the inguinal nodes (or rather, that is the first major lymphatic basin, though it may get trapped in lymphatics, especially at the back of the knee, prior to that). The lymphoscinitgram, or whatever equivalent they are using today, will map out that pattern of lymphatics. Then they will probably do what is called a sentinel lymph node procedure. This is most commonly done in the breast, but its other main area of use is with melanoma. The idea is twofold, predicated on the fact that tumours tend to spread sequentially (though not always). So they will try to identify the node where the lymphatic channels from your foot are draining. They will take out only this node. This a) tells them the status and stage, which is prognostic information. And b) the node dissection can be limited, so the drainage from your foot and leg is not damaged much. If that node is positive, they may suggest taking out the rest of the nodes or even take a strip from the foot up to the groin (called en bloc resection); this isn’t much used today because it can cause a lot of problems (“morbidity”) and it doesn’t seem to be much help – it was predicated on the theory that taking out the lymphatics contiguously would remove all the areas of local spread (“therapeutic excision”), but realistically it doesn’t really seem to help. These days, I think most surgeons just stop at the sentinel node. The other test they will do is a CT and/or MRI scan of chest and liver, partly to look for spread that might already be there, partly to do a baseline so that they can monitor for future problems. If they do see something at this time, but it isn’t obvious, they may sample one of the lesions by fine needle aspiration (FNA or FNAB); the radiologist will do this while you are on the CR or MRI table so he can monitor exactly where he is putting the needle, which is long and looks frightening, but it is actually very thin.

After they have all that information, as you have noted, then they will consider treatment. I am not au fait with melanoma therapeutics, but my guess is that if it doesn’t seem to have spread, they will probably just stay tight with the surgery (local excision with graft, plus sentinel node from the groin). If the node is positive and/or they see anything on scans, they will try treating. I don’t know if there is any good chemotherapy, but I do know that interferon has been used with moderate effectiveness. This is a chemical (one of many) that your own body produces to fight off infections and cancer cells that float all over everyone’s body all of the time; we are all walking time bombs, and occasionally, as in your case, the cancer cells evade the natural host defenses to cause trouble. Unlike for tumours of other kinds or in other places, treatment of melanoma seems to be largely aimed at boosting the immune system. Interferon will make you feel like you have the flu, which, in a way, you do. But I don’t think it causes hair loss thing and other usual side effects of chemotherapy (and you hardly need your hair to come back in even curlier than it was!). There are also, I think but am not sure (will look it up if it comes to that), some new treatments and they might suggest you go on a clinical trial – I seem to recall an “armed antibody” being used experimentally for melanoma, but I’d have to check – no sense in jumping the gun at this point. If the tumour has not obviously spread, then after the surgery, you will be finished for now. But they will take off any other lesions which look even remotely a bit odd, so if you have any other “moles” you can expect to lose them. And you will probably be going back for oncologist visits for the rest of your life, at least for 5 years. Melanoma is one of these tumours that can disappear for years and then suddenly pop up again, though as I said, even that is not necessarily a bad thing, but it will need excision if it happens in the skin.

I have also heard from Mr. J.R.S of Alnwick (UK), Dr. D.G of Cork (Ireland), Ms. J.S of Calgary, Dr. A.C of Calgary, Ms. A.A of Halifax, Ms. S.L RN of Calgary, Mr. D.H of Saltspring Island, Ms. K.B of Calgary, Dr. H.D of Calgary and several members of the H-J family in various places. My sincere thanks to all who have phoned or written during the last week. Your support has been invaluable. Please stay in touch.

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Responses

  1. Yeah, you would pick up on that one paragraph of many. 🙂 The odd thing is just how many of those initials I think I might know as well!

    Keep well, old friend.

    Mr. M.D. in Nanaimo.

  2. There’s a stage and an age where you decide to tough it out, no matter. You have a great outlook on life, the universe & everything. We run into things, pick ourselves up & continue on until the path runs out. We adjust to different conditions. As long as we can breathe, read, eat & be merry, life is… There’s always a positive. I had a stunning nurse who helped me excrete again. Trust me, it becomes a priority issue after awhile. LOL. Hardly the sexual encounter, but very satisfying nevertheless. (Edit as you wish 8^)

  3. P.S. You can add.. Life affirming…

    Soi jolie, mon vieux~!

  4. Be that bad patient. I’ve been a patient advocate for two women, each facing cervical cancer and then a hysterectomy whose fears kept them tongue-tied. It wasn’t my fear, so I could be clear for them.

    I expect P does that for you.

    If you need a consulting oncologist to help you find trials or more opinions or studies or the like, let me know. There’s a very good one near Menlo Park, even if she and I couldn’t work together!


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