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View Full Version : New Presurgery Melanoma stage 1B, advice


kab07011
09-29-2009, 03:49 PM
Hi, My name is Kim and I am a 30 year old busy mom and wife and was recently diganosed with Melanoma on my lower back. It simply looked like a zit there that would bleed occasionally. We live about 2 hours away from Pittsburgh, PA and decided to go to the Hillman Cancer Center when we learned of this. I am SOO worried right now and trying to take extra good care with eating properly and vitamins.

Anyways my biggest concern is spread while waiting for surgery, which is not scheduled until October 21 (soonest they could get me in). My original biopsy was here in my hometown on Sept 3 and we got the results a week later, then had to meet with the onocologist, surgeon, etc. I know this is an easier to treat stage if caught early, but this extra waiting has got me a bit paranoid. I do not have any pain in my lymph nodes at this point.

I will have an SNL done (most likely groin) and wide excision. My melanoma measured .95 + (that + also has me very worried since they could go in and lots more is there), shave biopsy. Also ulceration.

Please share your experiences with waiting for surgery, what to expect, helpful advice, etc. Thanks sooo much. :)

Oleander53
09-30-2009, 06:11 AM
Hello Kim, Did you get a copy of your Pathology report? If not get one to keep for your records. It will have more details about your melanoma.

Sounds like you have a plan in place and are going to a good facility. I am happy your melanoma was found. The waiting IS stressful.

Let us know how you do and think positive. Sincerely, Oleander

1sweetheart
09-30-2009, 07:24 AM
Hi Kim,

Like you, I am new to this, however it is my husband who has melanoma. He is 38 years old and was diagnosed with superficial spreading melanoma on his left calf via a punch biopsy. If you like, you can read my other posts which I started the day after we got the results from the biopsy and have continued to update fairly regularly. There are some wonderful people on this board who have gone out of their way to answer my questions and help ease my fears. I hope you will find the same support and help here that I have.

We got the results of my husband's biopsy on Monday, August 30th. We met with the surgical oncologist on Thursday, Sept. 3rd. We were told that his melanoma was .7 thickness, Clarks level II. The surgeon staged him as a 1A. Because my husband travels extensively as part of his job, we had to work his surgery around his traveling and he was scheduled to be out of town during the middle part of September. The surgeon scheduled him for surgery on October 6th and said she had no problem waiting that long (keep in mind the surgery date was over a month after our initial consult). She told us that she would strongly discourage putting the surgery off for a long period of time (e.g. three months or more), but said it would be fine to do it on the 6th.

As it turned out, my husband returned from his trip early and asked me to call the surgeon's office to see if he could have the procedure done sooner. As luck would have it, they had a cancellation for yesterday (September 29th) and it was done then. All went well and he is sitting here with an ice pack on his leg as I type this. He had the wide local excision only done under a light general anesthesia. With the melanoma being on his leg the surgeon is mostly concerned about him pulling a stitch if he resumes his normal activities too quickly. He is having very little pain but does notice some tightness in the area.

Another concern, as you had mentioned in your post, is we won't know until the pathology report comes back what the actual depth of the melanoma is. My husband's melanoma started in an existing mole and was a rather large area (maybe 1/2 an inch in diameter). The dermatologist took a large sample in the biopsy but did not get the whole thing. The part he took was the part that I had thought was most concerning but we will have to wait to find out what pathology on the rest of the lesion shows. The surgeon said she feels comfortable that the 1 cm margin around the lesion should be adequate even if it does come back thicker.

I hope I have been able to help by sharing a little bit of our experience. Please just know that there are many people on here who are going through what you and my husband are dealing with and who understand your fears and concerns. Take care of yourself and please let us know how you are doing.

Chele60
09-30-2009, 10:36 AM
Hello and welcome!

To start off, I had a melanoma removed 2 1/2 years ago. It was .70 mm thick, nodular (meaning it was growing downward, as opposed to superficial spreading, which means growing outward), un-ulcerated (it wasn't bleeding), and I did not have an SNB. I was staged at IB. I currently undergo twice yearly skin checks with my dermatologist, and personaly skin checks every time I take a shower - which is daily!

The journey you are about to undergo is scary and frightening, but when you go up against cancer, you will emerge a very different person.

I first noticed a "freckle" developing on my knee at the end of October/beginning of November 2006. I'm not even sure why I noticed it, and I've been further at a loss as to why I kept watching it. I've got a lot of moles and freckles, so what was one more? By the beginning of December 2006, this "freckle" had become a full grown "mole." It did not appear to have any of the characteristics of melanoma: it was perfectly round, extremely crisp borders, just under 1/4" in diameter, and although dark, I had other moles that were darker. But something about this just didn't seem....right. When I showed it to my mom and my boyfriend, they both thought it was a mole - a little darker than usual, but a mole. Then, in mid-December 2006, it sort of popped up. I'd had moles do this before, but I was already a little concerned - and my boyfriend became really concerned. I was scheduled for my physical mid-January, so I brought it up to my doctor. She didn't seem overly concerned, but suggested we remove it. My biopsy was scheduled for February 21.

On February 21, 2007, my doctor did a shave biopsy. On February 23, my doctor called me with the news: malignant melanoma. You never forget that. The date, the time, the day. The weather, where you were, what you were doing, the sound of the doctor's voice. Time seems to stand still. The other bad part? Telling your family and those close to you. I hope I never had to do that again.

On March 5, I had my consultation with my surgeon. On March 27 I had my WLE. I was lucky in that from the time of my biopsy to my surgery was just over a month. But I do remember that from February 23 on I was soooo tempted to just get a knife and start trying to dig this thing out myself! It IS scary, and I could imagine this cancer seeping through my skin, my blood every second, with every breath I took, with every step I took. I felt invaded and vulnerable. Even after the surgery, when the surgeon told me he had acheived clear margins, and he believed he had gotten it all, I still felt as though I had melanoma. And today, 2 1/2 years later, I do not refer to myself as a "survivior." I am NED - No Evidence of Disease (a term most who have melanomas removed referred to). It's what I feel comfortable with now. I'm hoping one day I can call myself a "survivor."

Waiting for surgery will drive you nuts. You will start to think of all the "what ifs" and that is one thing you simply cannot do. One of my philosophies in life is: don't worry until there is something to really worry about. You have a husband and you have children (or a child?). Sink your energies into them right now. Trust me, your husband is probably more scared than you right now. He's going to need your strength to help him be strong. And being a mom comes with all sorts of issues. You don't say how old your kid(s) are, but if you are 30, then any children must be young. Although that has to be playing on your mind, remember that kids pick on parents anxieties. I've known quite a few people battling melanoma who have found a great deal of comfort from their kids. Kids are just so great!

With a thickness of .95, there is need to be concerned, but your are still falling under 1.0mm. In your situation, it is a good idea to undergo SNB, and hopefully, this is just a precaution. If you were to actually see just how thick .95 mm is, you would be shocked to learn how thin that really is. Most of the time, at this thickness, an SNB is done more for precaution. And, to give you some perspective, I've known people who have had melanomas as thick as 4 and 5 mm, and were Stage II. In other words, no lymph node involvement, just very thick melanomas. So, again, worry when there is something to worry about. This isn't the time to worry.

However, when your WLE and SNB are completed, do make sure you receive a copy of the pathology report. The surgeon usually zips through it, and sometimes will not give all the numbers. A pathology report is something you can take with you and look at when you are calm. You can also find people online who can tell what the numbers mean. A pathology report after your surgery is going to give you far more information than the one from your biopsy.

Oh, and something else to keep in mind. Just be prepared for some nice looking scars. This shocked me when I had my WLE. The scar is about 3" long on my knee. It's not very nice, but it certainly is a good reminder. In your case, you will also have a scar from your SNB. I'm not sure where they will take the lymph node from, it depends on which lymph nodes "light up." But wherever that is, you will have a nice little scar there, as well.

If I can answer any other questions, just let me know. I am sending you good vibes and good thoughts! You WILL get through this!

kab07011
09-30-2009, 03:43 PM
I do have a copy of my pathology report from when I had to take it to Pittsburgh with me. Is there something specific I should look for in it?

Thanks for the great advice and sharing your stories. I am trying to keep a clear head while waiting. Sweetheart please keep us posted about your husband. Sending good vibes to you. Chele that is wonderful you are NED, I wish you forever of it!