A few questions

KLM · New User Joined: 31 Jul 2008 Posts: 8

Hello!

My husband had an ulcerated melanoma removed and I have some questions for you guys…. First, here is a brief history of his case:

June 5 – at my husbands yearly doctor checkup he pointed out a place on his right arm (just above the elbow) to the doctor. It was a small sore about the size of a pencil eraser that looked like just a scratch. It had been there a long time (since last summer/fall) and would heal up a little and then come back, back and forth. The doctor thought it looked very suspicious and scheduled him back to take a sample of it.
June 10 – family doctor removed a small sample and sent to lab. We were told they would call in 1 week with the results.
June 24 – (2 weeks later) nurse at family doctor called and said it was cancer and referred us to another doctor and she set up an appointment with another doctor for him
July 2 – first appointment at new doctor (surgeon) but the family doctor office forgot to send the lab report to them so that was a wasted trip!
July 7 – second appointment at new doctor and they have the report now. We are informed for the FIRST time of what kind of cancer it is – Melanoma. We are told it is 1.24 mm. It is also ulcerated. Surgery scheduled for removal of large area around the melanoma and a Sentinel Lymph Node Biopsy.
July 17 – Surgery Day. Surgery went well. The place on his arm is 3” and has 17 stitches – under his arm there is another 2” incision. We are told that by the EYE the 2 nodes they removed look good and that they will be sent to the lab for further testing

July 30 – Follow up appointment for lab results. We are told the lab results are not back yet. The doctor says he is having the lab do more specialized “stains” and that he has talked to them several times to “direct” them on various things he wants checked. I asked if this is “routine” or if there is something in particular about my husbands case prompting the extra lab work. He said it was just routine. He said that the technology of this type testing advances about every 6 months and that older tests may not catch something that is actually there and that is why he’s ordered more testing. All that took place at this appointment really was the removal of the stitches.

It has been two weeks since his surgery and we were very disappointed to not get the results and (HOPEFULLY) put all of this behind us. Our next appointment is August 6.

So my questions are:

Does it normally take three weeks to get lab results back after a SLNB? We are probably just being impatient I guess...I’ll most definitely admit that we have been on edge since this whole thing started – especially since the July 7th appointment in which the doctor terrified my husband and made him think we was going to die at any moment. Some people have said that if there was any bad news they would have told us by now (this is supposed to ease our worry I guess).

Also, when we get the results back if they say they did not find any cancer cells in the nodes should we just trust that or would getting a second opinion be a good idea? Something else I've been wondering about is that they took 2 nodes - what if the cancer is in some OTHER nodes instead of the two they took? Am I being too paranoid?? We live in a medium size city in Alabama and the best cancer center in Alabama is about an hour away - should we consider taking all his reports there? Can THEY test the same nodes or would they have to go back and do another SLNB??

I’d appreciate any thoughts/advice regarding our situation and the above questions.

Thanks!!

brainman · Posted: Fri Aug 01, 2008 5:20 pm Post subject: Re: A few questions

KLM, I am very sorry about your husband's cancer. Each of use are so unique that nothing is "normal." However, what your husband is going through is familier. I know waiting is hard. The length of time that a person will need to wait depends on a number of things:

1. the type and number of special stains required
2. do the samples need to be sent elsewhere for testing?

Several weeks is sometimes "normal". When I had my second brain biopsy, I had to wait several months because they wanted to do a genetics test before making the final report. However, in your husband's case, they should at least know its cell type by now. That would help us to help you understand what to expect.

I general, yes, bad news comes faster than good.

SLNB are wonderful for the very reason that there is so little chance of a false negative. If cancer cells have gotten into the Lymphatic System, they will be in the sentinel nodes. If they are negative, the is almost no chance that other nodes would be positive. Having said this, the lymphatic system is not the only way cancer can metastasize.

From what you have told us so far, I see no need for a second opinion. However, if you are concerned, I would definitely go the UBA or, better still, Vanderbilt. Unless you really want to go to North Carolina or Florida, I would not waste my time and money going to any of the other centers in the Southeast. My philosophy is that if you can go to 2 of the top 20 Cancer Centers in the US within a short distance, why go anywhere else... especially for a second opinion?

They WILL have to look at the same sample. Actually, it is not just a sample. They removed all of the sentenal nodes so there is nothing ease to sample. If the sentenal nodes were positive were positive, they might what to check other nodes but would probably not do another SLNB.

You and your husband are in my thoughts and prayers.
_________________
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Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
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KLM · New User Joined: 31 Jul 2008 Posts: 8

Thank you, Jim, for your response!

You've made me feel a bit better. I didn't realize that the two sentinel nodes they took would be the ONLY two so thanks for explaining that. I don't always think of all the questions to ask while we are in the office - it's usually later when my mind is mulling all of it over and over that I think of these other things.

For a number of reasons neither of us are very comfortable with his current doctor and don't feel very trusting towards him or his office personelle. Even though I have heard a lot of good things about his office from other people. That's what got us wondering about a 2nd opinion. We would probably go to UAB since it is closest if we decided to go for a 2nd opinion. Or if they do come back with bad news we will probably transfer everything to UAB at that point.

One more question...
[i]However, in your husband's case, they should at least know its cell type by now[/i]

What do you mean by "cell type"

Thanks again, and I will try to be more patient. Smile

brainman · Posted: Sun Aug 03, 2008 5:20 am Post subject: Re: A few questions

Oh, by that comment I just meant that until the biopsy was done they could not be 100% certain that it was indeed a melanoma. They should at least know that by now.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

KLM · New User Joined: 31 Jul 2008 Posts: 8

oh okay.... yeah, we know its definitely melanoma - Ulcerated and 1.24mm thick. Now its just a matter of the SLNB results to see if it has reached the lymph nodes.

Two more days til we find out.

Thanks again for your responses!

KLM · New User Joined: 31 Jul 2008 Posts: 8

We got the results back yesterday and they found cancer cells in the sentinel nodes. The cells they found, they said, are on the outer edge of the nodes which I guess is supposed to be a good thing.

We didn't even have to bring up UAB - the doctor did that for us. We will find out today when our appointment at UAB will be.

Does this mean he is now at a Level 3? Is this just bad - or really really bad? Is it still curable?? I'm starting to really be scared now....

tonester · Experienced user Joined: 03 Mar 2008 Posts: 83

The term "curable" isn't really applicable to melanoma.

Unfortunately there is no known "cure" for melanoma.

However, "remission" is possible.

The longer a person goes without a recurrence of the cancer the better the prognosis.

I really feel for you and your husband. It's a super tough situation to be in. My wife and I are in the same boat.

It's not necessarily a death sentence. I know several people who are still rolling 10 years or more after being diagnosed with cancer.

Look at Brainman/Jim. He's 15+ years and still cruisin'. Very Happy

Wish there was something I could say or do that could truly put you at ease.

I do know that my wife and family keep me going. This is one of those times when you'll have to be strong for yourself and your husband.

Tony
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****Kick'n Cancers Arse Since April 2007****

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KLM · New User Joined: 31 Jul 2008 Posts: 8

I don't know why I used the word "cure". I know better than that! I think I just meant "is it survivable?". I've never been in a situation like this before. In fact, his Sentinel Surgery was the first surgery I've ever been side by side someone with so this whole process is VERY unknown to me. I'm trying to educate myself as much as possible which helps a lot.

Thank you for your words of encouragement, I truly appreciate it. I'm trying my best to be strong and positive. I know that I have a very important role to play in this and I am learning its a fine line I have to walk regarding emotions. I try always to keep my "brave face" on whenever around him, even though sometimes that can be very hard.

All of you and your stories are an inspiration!

tonester · Experienced user Joined: 03 Mar 2008 Posts: 83

You hang in there KLM

I do my best to forget I have it.

Still take my meds on time, and show up to appointments and all, but try my best to forget it as much as possible.

Your husband is a lucky man having a wife that is so concerned.
_________________
****Kick'n Cancers Arse Since April 2007****

You can check out "My Story" at the link below.
http://cancerforums.net/viewtopic.php?t=9083

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