deeper melanoma

Lissa hi,
I'm sorry to hear you've had this chain of events and it's not surprising you're stressed out and wondering how to manage during the two weeks of waiting. Now that you know what the problem is, and that they are recommending chemo and radiation, maybe you could spend some of the time planning ways to stay determined now you've got this new challenge in your life. Some people find that reading up on treatments and being fully involved in decisions about treatments helps a lot. There's an excellent website called MPIP (Melanoma Patients’ Information Page) which has lots of information and a very active bulletin board (forum) and a chat room. The home page is at http://www.mpip.org. You can also visit my website http://www.cancergen.com for links to other cancer websites for information and support.
Regards, Ed Everest.

Hi Lisa,

I understand exactly what you are going through, and my mother does as well. In fact she was going crazy almost all of this last year.

Almost exactly 1 year ago this month (10/04) I experienced a very bad headache, started loosing my balance and some vision. Went to my GP and he ordered an MRI of the brain. He called me 2 days later and said that they needed to have another MRI with contrast to get a better picture of what was going on, but that the melanoma on my shoulder that was taken off 4 years ago might have spread to my brain and is causing it to bleed.

We had the 2nd MRI and the GP's associate called back (my regular GP wasn't on that day) and said that they thought the melanoma had spread to the brain and I should see an Oncologist and "Good Luck". That was a friday evening. We had the whole weekend to imagine the worst, look up statistics on the internet and panic.

That doesn't help. Statistics and panic are meaningless to individuals.

I had been seeing my Dr. at the John Wayne Melanoma Center every year as a precaution and had no other symptoms prior to the headache.

Well, when I got the news from the GP's office I tried to call my Melanom Dr. but he was out of town at a convention. His office suggested I call the oncologist's office in the mean time and also call the USC Norris Cancer Institute for an appointment. Now I called the Oncologist's office and could get an appointment in several weeks (like you) and called USC and they said that the Dr. was busy for the next 2 weeks and then was going on vacation .... they could schedule me in to see him in about 60 days.

And I could go on ... waiting to get an opinion on cyberknife treatment took 90 days, and so on ....

The point of this story is that you have to be your own best advocate for your treatment. If not you are at the mercy of the scheduling nurse that doesn't know anything about priorities in scheduling.

My Dermatologist actually came in and started driving the bus. He got my melanoma Dr's cel number and called him at the convention and we got the ball rolling. My melanoma Dr. called USC and got an appointment for the next week (which I couldn't keep because of the emergency brain surgery).

My best advice is to be just short of angry with the staff you have to deal with, still be polite but be stearn. If you are in front of them and push to have your concerns heard, they will be heard and responded to.

And to finish my story, 2 weeks ago they finally removed all the lymphnodes on my right side (under my arm - about 40 of them- I think that might be a record). This was after they noticed a lymphnode that was larger than it was supposed to be and was showing up on a PET scan. It took them about 3 months to decide to remove it since it didn't appear to be growing for the last 6 months. Well they removed it back in the beginning of May and it was positive. Then they wanted to remove the rest of them on that side, which is what they did just 2 weeks ago (one out of the 40 was also positive).

So, I'm sitting here - Stage IV (and that was surprising to see for the first time on the oncologist's chart) and taking care of the things that need to be taken care of. One Dr.'s appointment at a time. Right now, I'm technically cancer free.

But always making sure that I have my questions answered (I keep a notebook so I don't forget) and that my concerns are heard. I believe that you have to get the best Dr.s you can and work with them to get the best treatment for you.

Good Luck with you interactions among the medical staff. Be your own best advocate and take someone with you to make sure you ask all the questions you want. Remember, the Dr.s work for you.


Regards,
Scott Davis

Hi Lissa. I'm Larry. I haven't been to this site for awhile, but I know what you're going through. I was diagnosed with melanoma on my nose in June '05 and was given an appointment w/ my dermatologist to have a wider excision in July by one of his partners. that surgeoen couldn't get me in before the middle of July. It was agony waiting, but the day of my appointment finally came. I was prepared and arrived on time for the appointment. I was taken into the office and was ready for the procedure. the surgeon started to draw and realized that the procedure was to extensive to be done as an outpatient and needed to be done in a hospital. Arrangements were made quickly but it was agony, having to go through the wait and the preparation again. Long story- short. The procedure went fine and they got it all, but I lost complete confidence in my dermatologist of ten years. He should have taken care of me, and did not; he should have gotten me in faster, known that he was looking at a bigger procedure than his office could handle, and should have scheduled me more promptly.
I liked the surgeon at the hospital and changed my philosophy about my treatment of the problem.
I no longer have a wait and see attitude. Doctors are human, they make mistakes....but it's my life. I have had melanoma four times now, 1986, 1997, and twice in the last six months. Everything that is suspicious- needs to come out. A little pain spread over a few days is nothing compared to the agony of not knowing what and when things on my body will change. Scarring and marks no longer matter. There is no room for vanity in my life. I need to live, for me and my family.
Do whatever it takes to live because this stuff can and will kill you if you don't catch it in time. Have as much fun as you can in responsible way. Your are responsible for your life, and don't let anyone tell you to wait to get on with your life.