:: Battle with the Beast ::

Recently diagnosed with Melanoma, my thoughts and feelings as I move thru treatment and recovery
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:: Friday, May 09, 2003 ::

Welp, had my follow-up with Dr. Bodurtha yesterday morning. Checked the surgery sites (looking good), gave me some exercises to do to help with the "weird feeling" I'm still having with my armpit(climbing the wall).

The results for the liver ultrasound and the chest x-ray were in. Good news - no sign of anything on either. Will most likely confirm this with CT scan, PET scan and MRI after I finally meet my medical oncologist on May 29.

Results from the WLE/SNB were back too. Good news/not so good news.

Good news - No satellites or in-transits, only one microscopic focus of residual invasive melanoma (leftovers from the biopsy site apparently). Dr Bodurtha said clear margins so nothing to worry about there.

Not-so-good news - They took out 4 lymphnodes, 2 came back positive. One was nearly 100% tumour, the other was 80% with desmoplastic appearance in others. Bodurtha didn't distinguish between micro and macromets, but I submitted the question to Ask an RN at cancerpage.com because micro vs. macro seems to be a confusing thing for everyone and I wanted a little bit of clarification.
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Your Question:
I've recently been diagnosed with Malignant Melanoma.

My Sentinal Node Biopsy path report showed two nodes that were "almost completely replaced by tumor" even though the doctors could not feel them when checking my nodes.

Could you please explain the difference between nodal micrometastasis and macroscopic nodes and tell me what my nodes would more likely be considered?

Thank you,
Heather

Expert's Answer:
Hello Heather, Microscopic describes disease that is not large enough to be seen by the naked eye. "Macroscopic" is the opposite (large enough to be seen with the naked eye). In some cases, disease is evident in screening exams such as CAT scans. This disease may or may not be palpated (felt). Microscopic disease is not evident upon examination with either screening tests or physical exam. It can be detected only by examination of a tissue sample under a microscope. When a biopsy (sample of tissue) is taken, it is examined under a microscope by a special doctor called a pathologist. The pathologist can determine if cancer cells are present and the cell type of the cancer. Your physician has access to all relevant medical records including pathology reports and slides. The physician can best explain what was detected.

For more information on melanoma go to: www.mpip.org
Best of luck. ONC RN
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So, looks like my nodes are most likely considered "clinically detectable" or macroscopic. Making me a Stage IIIc because of the ulceration of the original mole. I'm not 100% on that tho, will verify with the medical onc when I see him on May 29.

So what does that mean in survival rates? According to the AJCC Revised Staging for Melanoma 2002:

Stage IIIb (best case, if they are considered micromets) 2-3 microscopic regional nodes, ulcerated primary (T1-4bN2aM0) 5-year rates are 50%, 10-year are 36%.

Stage IIIc (if they are indeed considered macromets) - 2-3 macroscopic regional nodes, ulcerated primary (T1-4bN2bM0) -- 5-year rates are 24%, 10-year are 15%.

(One note about this chart, there is a typo on Stage IIIa, it should read "Single mAcroscopic regional node" NOT "single mIcroscopic" - check the TNM staging for verification.)

You might ask, why do I torture myself with statistics? I'm not, I want to know what I have to beat. I ~WILL~ win this battle. I know plenty of folks at MPIP who have already beaten much worse odds. They are my heros and I want to be just like them when I grow up. ~grin~

So yesterday was a pretty big day diagnosis-wise, but as I was leaving I ran into one of the SmartSite volunteers who I trained recently. He was walking down the corridor with his ballcap on, hiding his still chemo-bald head when I saw him. I ran over and all but grabbed him. It was nice to see a friendly face so soon after diagnosis, especially since SARS restrictions prevented Chris from coming. I asked him why he was there (thinking I already knew), he proudly said, "Well, I'm a cancer survivor, I was just here for a follow-up visit." I told him I was there for surgery follow-up, but was about to begin my journey thru treatments. He reached into his plastic bag and pulled out a copy of "Garfield, How to Party" and said it was recommended reading. You have to like that attitude!

I wandered out to the bus, rode down to Chinatown (can you tell I like Chinatown?) where I wandered thru a couple of groceries before heading to the bakery to buy BBQ pork buns and coconut buns for the folks at BHC. Chris called me on the cell as I was walking in, so I gave him the Great/Good/Not-so-Good news and promised him I was ok.

Boxes of buns in hand, I headed to BHC, arriving by 10:30 even though I wasnt scheduled to be there until 1:30 for program. Barb, Terry, Marg, Giselle and all the moms have been incredibly supportive since my original diagnosis, and it was comforting to be around them until I could see Chris. They all asked what the results were, I made it through the basic explanation pretty well. I got hugs and kind words of support from everyone. We had a good lunch of buns, then program. Finally, I headed home.

Chris arrived about 30 minutes after I did, we talked abit but the Great side news took the biggest part of the conversation. We had to go talk to the supers and get the "grand tour" of the building and discussed further the expectations of the position. In their minds, the job is ours, just hope the landlord agrees!

Ran from the meeting with the supers to a super supper at the Shwarma King. YUM! Then hurried over to the Civic Centre to see game 4 of the OHL Finals. After 2 overtime periods, our boys sadly lost, but it was a good fight between to great teams.

We got home around 11. Exhausted. Crawled into bed and talked for another hour about the day before falling asleep. I think it was good that I stayed so busy for the day.

I woke early Friday morning to head to the SmartSites Town Hall meeting. As soon as I arrived, Cheryl and Lesley asked how the appointments went. (I'd received emails from both of them late Wednesday sending me "good vibes".) I gave them the quick and dirty run down. Again, what wonderfully supportive people I have in my life here! The day was a busy but fun one. At the end of the day, to my surprise, I was presented with a Volunteer Coach/Facilitator recognition award. I teared up as Cheryl told the group of my contributions to SmartSites and BHC, I looked around, there weren't many dry eyes. Cheryl couldn't even look at me, she was fighting tears as well. Talk about making you feel incredibly valued!

Afterwards, Cheryl and I carried the remaining food (6 huge trays full!) over to the Mission, one of Ottawa's homeless shelters. The staff was very appreciative. As we were walking out, one of the clients smiled at us and said, "thanks you". I nearly cried. (I'm nearly crying now, remembering it.)

So, the yesterday and today were a rollercoaster of emotions. I still feel very positive about this battle and life in general, I will not give up.
:: C'Mell 9:17 PM [+] ::
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:: Monday, May 05, 2003 ::
I plan to do a better job of including links of all the pages I've been doing my research about Melanoma on. I've researched every imaginable treatment, conventional and alternative, out there. Why? I want to be educated and know what my potential treatments might be, which alternative treatments might conflict with conventional treatments, and to be able to make the best decision in dealing with my cancer. (I hate that word, you may notice I rarely use it.)

Today, I stumbled on a page that gives a general description of a large number of alternative therapies. There are some alternatives I think are realistic, others that are questionable, and the largest group, which I'll call the "Are-You-Freakin-Nuts??" group. I know there are many things that seem to have worked for some people, but you always have to take the "amazing results" with a grain of salt, looking closely (if they let you) at their testing methods and the results - are they just testamonials and anecdotal? What kind of control groups have been used?

Another good resource I've found regarding the alternative therapies is QuackWatch. Although he has some of the therapies I'm considering persuing on his lists, I still think it's a good resource for taking a step back and evaluating the different possibilties.

What am I considering? Well, the jury is still out on that. For one, I want to talk to my medical oncologist first and find out what treatments he believes that I should have. Then based on that (and my own research into the various medical treatments), I'll decide what to do. As far the alternative options, I'll talk with the docs see what views they have on the different alternatives. The Ottawa Regional Cancer Centre even encourages you to check out the alternative therapies on your own, so hopefully the docs will know a bit more about them than I would expect a doc in the US to know. For now, I've increased consumption of fruits and veggies, drunk tea (green AND black) by the gallon, and done my best to continue walking when I can. Not huge changes I know, but it's a start.

One alternative therapy I am considering seriously, is the Essiac tea. I've always been a fan of herbal remedies, and it looks like a fair amount of research has been conducted, although it was not conclusive, I still have a positive feeling about it. I did, however, find there are some people who should not take Essiac. This page from Mother Earth Herbs lists circumstances/disorders where Essiac should not be taken. I'm still doing research into it, and will definately be talking to my doctor about it.

Another "Diet" that I discovered in my research today is called the Budwig Diet seems interesting. Although I wouldn't do the full diet, I don't see how having a bowl of cottage cheese with flaxseed oil in it for breakfast could hurt. I know a few folks on the MPIP bulletin board are using flaxseed oil as a supplement. Of course I'll do more research into it before I start.

Back to the green tea for a second, I walked thru ChinaTown again today, ducking into my favourite little grocery to pick up my steamed pork buns and steamed red bean paste buns. While there I wandered over to the tea aisle since my stock was running low, I found the most delicious jasmine tea! Yumm. To top it off, the metal container is the golden colour I've almost decided to paint the living room.

One last thing, something to make you smile. Some dogs have been shown to be able to sniff out cancer, melanoma included. In fact, one of the posters on the MPIP board had her mole checked out because her dog kept licking at it. The cover dog of the new Create-A-Smile calender is Dr Buddha, a cancer sniffing dog. I love their motto - "Paws'itive Healing".

I almost forgot. It's Melanoma Monday. Help increase awareness and support your local cancer society or any melanoma research group. It still amazes me what a monster this Beast is. More people need to know that "It is NOT ~JUST~ skin cancer!"
:: C'Mell 5:16 PM [+] ::
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:: Sunday, May 04, 2003 ::
The weather's turned nice here. At least intermittantly. I went to the Lynx game yesterday. It was nice to feel the warmth of the sun, tho, admittedly, I've become a bit paranoid about the sun. I slathered on the sunblock before I ever left the house. Sat in my long sleeved shirt (was just on the edge of long sleeve - short sleeve weather) and let it warm me for a while before I started to worry that I might be turning pink, so out came the floppy hat and the jacket. Luckily there was a bit of a breeze so I didn't overheat.

There was a group folks next too me and after an hour or so, I glanced over and this poor little guy's ear and back of his neck were bright red. It made me hurt. It was all I could do not to start preaching about sun safety. Granted, who thinks about sunblock when its barely 60 degrees?

My face has that lightly toasted feel, but to look in the mirror, I didn't get the slightest hint of colour. It was nice to be in the sun....
:: C'Mell 12:36 PM [+] ::
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Its been a few days since I posted. Up days. Down days. In-between days. Sometimes, this Battle sometimes feels more like a rollercoaster ride than a war. I had one good night of crying. Spent several hours snuggled in Chris's arms saying outloud all the things I've been thinking. I know that I'm a fighter, but I still worry about him being alone if I am not the victor. He said something that made me feel better (sortof) "I was alone and miserable when I met you, I'll be alone and miserable if you're gone, but I'll have had years of happiness in between."

This looming path report has me anxious. My gut tells me that it won't be the best of news, but that it wont be the worst possible news either. I'm ready to face treatment, whether its the immunotheraphy, chemotherapy, radiation, surgery or a combination of any/all of them. At the same time, I'm looking to the future (hopeully, the very distant future) and wondering if I should start making "arrangements". Scooter is going to be coming up the second weekend of June, I plan to talk to him about buying the house. That would be one less thing for me (and the family) to worry about. I haven't talked to Chris about it yet, but regardless of the path report, I plan to do my will soon. We both need to. Not that we have lots of possessions, but it would make financial things smoother if anything were to ever happen to one of us.

On the lighter side of things, it looks like we may be getting closer to the decision on the super's position. It would be nice to get that settled and hopefully get moved before this next round of whatever starts. I am planning on asking the docs if we can hold off until June 20 so that my OHIP will cover it - whatever "it" turns out to be. Good news on the medical cost front tho. Let me start by saying - I love the Canadian healthcare system. I've started getting the invoices for the surgery and its associated costs. The accounting tech called to verify the information regarding OHIP and I asked what the bill was.

"For the surgery? 450$."

"Hold on a second, I can't breathe. Could you please repeat that amount?"

4 hundred 50 freakin dollars for surgery??? Amazing. Absolutely amazing. Also received the anethesiologist's bill, 234$. I think I'm still in shock. Still have to get the surgeon's, pathology and the nuclear medicine bill, but at this point, it looks like the total for the day is going to be under 2,000$. Unbelieveable. I was in the hospital in the US for 4 days for "observation" because of some abdominal pain I was having in 2001, the final bill came to around 15,000$ US!

I'm so glad to be living in Canada.
:: C'Mell 12:29 PM [+] ::
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