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Very scared-please help. Stage II Melanoma

cubsgirl21
Posts: 12
Joined: Sep 2010

My fiancee had a mole on the middle of his chest removed and tested and it came back he had stage II melanoma. He's 35 and we have a two year old daughter together. He still has to see a specialist in ann arbor, michigan and i'm scared as to what they're going to do. How much skin are they going to take off? What's going to happen after? I was looking at this melanoma website and they said something about survival rate after treatment was 5 to 10 years. Does that mean he's going to live 10 years at the most? Maybe i'm just reading the website the wrong way? If anyone here knows some answers, please let me know. I'm so scared of loosing him at this young age and scared he's not going to be around to see our daughter grow up.

Jill-

washoegal
Posts: 45
Joined: May 2010

first of all your fiancee is not yet staged. You may be reading the pathology report with gives you the depth of the tumor, which read Breslow depth X mm. This will give you an idea to the best case scenario. Stage II, has a very good prognosis. I have no idea where you are reading the 5-10 years. All cancers are quoted in terms of survival rates in these terms so it doesn't mean he's going to die in 10 years.

The next step is for the Oncologist (and it needs to be a melanoma specialist) to to a Wide Excision to make sure there is no other cancer cells, he will probably do a chest X'ray, maybe a CAT scan, depending on all that they may or may not decide to check the lymph nodes near the tumor. It's an easy surgery, don't worry about that. Assuming the lumph nodes are clear and the lungs are clear, he's good to go! Just regular scans will likely be the recommendation,

Good luck,
Mary stage 3

cubsgirl21
Posts: 12
Joined: Sep 2010

Hi Mary,
Thank you so much for your reply. Although, I am a little worried that the cancer isn't staged yet. He goes for surgery in a few weeks in ann arbor, mi. It is a melnoma specialist he's seeing. He also has a consultation an hour before the surgery, and i'm a little confused as to how they're going to know how much of his skin to take by just seeing him an hour before the surgery? How long does the surgery take and does he have to stay overnight? He recently had a chest mri or ct scan, i forgot which one and that came back ok. I'm just very scared for him, and he really wants to be around to raise our daughter. I've just been a wreck all day crying and looking things up online. I think i'm making the situation worse, but i just want to learn as much as i can about melanoma.

bho
Posts: 5
Joined: Jul 2009

Hi Cubsgirl21, I am a stage 3b melanoma. all of my surgeries were done in Ann Arbor. Could not have asked for better care. If I remember right( my surgeries were 5 yrs ago) the consultation b4 is basically with the anesitist. Seems like the surgeron was there and said what he was going to do also, but had heard it a hundred times by then anyways. Great doctors, some wonderful nurses and a couple of great nurse practitioners. They will remove the tumor,believe they wanted a centimeter?? of clear tissue around the site. They will send it to the lab, if any cancer cells are too close to the margin, there will be another surgery to remove more tissue(at a later time). They may do a sentinal node biopsy, where they remove the first 2 or 3 of the closest lymph nodes, I believe they will stage him after those results are in. These procedures were done outpatient. Only spent the night when they removed all the lymph nodes in a later surgery. Really a good place to be if you have to go through this, I cant say enough good things about the staff @ u/m

washoegal
Posts: 45
Joined: May 2010

The reason your fiancee isn't staged yet is because they need to make sure there is no spread of the cancer cells. Not to scare you more, but my small mole, which was actually fairly deep (3mm) ended up with a 6 " scar. That was on my side on the waist-line. Hopefully, since it is on the chest they are a little nicer but maybe not. The procedure is referred to as a WLE (Wide L???? Excision). It is a simple procedure, the time is in the prep work and waiting as near as I could tell. I would bet the actual surgery took no more than 20 minutes.

The second procedure referred to here SNB (Sentinel Node Biopsy). Starts with a radiologist taking dye and injecting it into the site where your mole was. They trace where the dye goes, and finds which lymph nodes it hits first. Each set of lymph nodes have 2-4 sentinel nodes which disseminate the lymph fluid to the other lymph nodes. They remove the sentinel nodes and biopsy those, if they are clear it is a very good indicator the cancer did not spread to the lymph system. Again, this I found to be an easy prodedure with a quick recovery.

Unfortunately, I had two positive for cancer....next step cut the rest of the lymph nodes out and see what you find. But I am sure you won't have to endure that.

As you can tell, you learn way too much about this stuff when you go through it. For right now, just know that since he had a clear chest xray and I am assuming he doesn't have any swollen lymph nodes, you should feel really happy. He may have caught this beast just in time!

Shines
Posts: 15
Joined: Jul 2010

Jill,
It is so hard not to automatically think the worst. My husband is stage II. His melanoma was on his chest also. 2.45mm deep Clark Level 4. They did another WLE and SLNB as an outpatient. Do you know what the lab reports state as in the depth? You will make yourself absolutely crazy looking at websites so don't over do it.
Depending on the depth of the melanoma will depend on if they do a WLE or WLE & SLNB. Go see the specialist and be ready to ask all your questions.
Please keep in touch and let us know how he's doing.
Suzi

cubsgirl21
Posts: 12
Joined: Sep 2010

Some people are telling me that his stage of melanoma isn't discovered yet. The doctor called Chris and just said that it was a 2 and that we caught it in time. So i don't know if that means that was how deep it was. I know i shouldn't think too much about it until after he has the surgery to see if it spread anywhere. How is your husband doing now? What kind of treatment does he have? Also, i know this sounds bad, but we live in hour from ann arbor and we have a 2 year old daughter. We also don't have family or anyone here to watch her so i can go with Chris when he has the surgery. I also don't want to bring my daughter to sit in the hospital all day and have her exposed to whatever is floating around the hospital especially this time of year. So Chris is going to drive there by himself and then i'm just going to pick him up when the surgery is over with my car and have my friend drive my car home. I don't want Chris to be alone before the surgery, but at the same time I want to protect my daughter. Is this okay what i'm doing? ;-(

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi,
Can you have your friend watch your daughter. The one who would drive your car. That way you can be there for the surgery. I think that would be important. He will be scared and having you there will be a great help. Also, the Dr will come out right after the surgery to talk to you. You should be there. Usually they come out while the person is still in the recovery room. If you cannot find a friend to watch your daughter, I would bring her, because it really is important to be with Chris right now. The Dr will give you an idea of time in surgery, you can then take your child outside to a grassy area to play and return to the waiting area a little before the expected time the surgery will end. You don't want to miss meeting with the surgeon after it is over. Best of luck to you.

cubsgirl21
Posts: 12
Joined: Sep 2010

I thought the surgery was going to be something routine? Is he going to have to stay overnight? I think Chris said on monday he was going to get a call from u of m as to what to expect from the surgery. Also, if i couldn't go with him initially, I would be there when he wakes up. It's just hard because no one else knows what's going on with Chris now expect for me and my friend. He lost his dad a year ago and he doesn't want to burden his family now with this news. At least not until he knows more info. If everything turns out fine, then he's just not going to say anything. It's hard to really do anything here since there's no family and very very few friends.

washoegal
Posts: 45
Joined: May 2010

Not knowing Chris, it is hard to say what to do. For me, for this particular surgery, I flew to the hospital, took a taxi, and had the surgery by myself. It was not a big deal. To make sure I did not forget what the doctor told me after the surgery, I had him write it down. You never know what the drugs do to you, even though you think you are coherent you lose bits of time and conversation. The biopsy doesn't come back at that very second anyway, so it's not like your going to know if you have good or bad news at that time. It didn't bother me to do the out patient procedure alone at all, although the hospital staff was horrified! I played on that...all the better for me :).

Seriously, do whatever makes you and Chris most comfortable. I didn't tell anyone about my cancer either until I knew the exact extent of it. Once they finished cutting and scanning, etc and all the results were in and I am now hopefully just on maintenance I have finally let the cat out of the bag. So I know where Chris is coming from. No reason to worry people, there may be very little to worry about....here's hoping!

Love and best wishes,
Mary
Stage 3

cubsgirl21
Posts: 12
Joined: Sep 2010

Yeah I do plan on talking to a doctor when i go pick Chris up for sure. Before I leave there, i want to know everything. So how long does he have to stay in the hospital when the surgery is over? Just wondering what to expect after surgery. It's scheduled for 2pm on the 29th. So Mary, you flew to the hospital? There wasn't anywhere closer that could do the surgery?

washoegal
Posts: 45
Joined: May 2010

We live in Northern Nevada, now with all the sun here you would think there would be alot of Mel specialists - not a one! I had a choice of going to San Francisco or Santa Monica. My sister lives near Santa Monica in So. CA. so that's where I went. It's only about an hours flight. I caught a taxi, checked into the hospital about 800 a.m., no time to get scared. I was scheduled to have a Wide excision and a Sentinel Node Biopsy. I waited, I waited, and waited, finally went down to radiology and waited some more. Finally they stuck some radioactive dye in me, the first one didn't go anywhere, so they did it a second time. This one worked! Then radiologist came in looked on the screen and marked four points on my arm pit and was gone. I went back up to the out-patient waiting area and watched T.V. - it was about 10:30. Prep for surgery, wait.......12:00, dr came in, he'll see me in about 20 minutes after he grabs a bite, (good no operating on an empty stomach).

12:30 or so I am in the OR, 1:30 I am in recovery, 2:30 I am getting my walking papers. LONG day but most of it was waiting! I think I got the biopsy results from the SNB in about 4-5 days.

My paperwork said the surgery would take 2 hours too...I just looked at it. What a laugh! The surgery takes 20-30 minutes , the waiting takes 4 hours, the prep takes and hour. OH-HUM!:-(

cubsgirl21
Posts: 12
Joined: Sep 2010

Wow that was a long day. All the doctor told Chris was that he has a consultation at 1 and then surgery at 2pm. So i'm guessing they're going to do that Wide excision and then from there I don't know yet. I'm not sure if they're going to check his lymph nodes or anything. They're supposed to call him today to tell him more details I guess. So how were your biopsy results? Did you have to fly back there for any more work? How are you doing now and how were you after the surgery? Chris is having it on the middle of his chest. I know he's going to have a scar there, but does it hurt a lot after it's over?

washoegal
Posts: 45
Joined: May 2010

I'm going to bet that they want him to check into the hospital much earlier, paperwork, prep,etc. He'll probably be released about 3:30 or 4:00 depending on how he reacts to the drugs, if the surgery was on time and when the doctor actually gets a chance to sign him out. Don't be surprised if he's sick to his stomach, I react that way every time, no matter how much anti-nausea meds they give me I get sick.

My tumor was deeper than Chris's, 3mm. I had two lymph nodes with cancer (very small amounts). I went back a second time and had all the lymph nodes under my right arm removed. Thankfully they were all clear. So now it's regular scans for who knows how long.

My wide excision is on my side on the waist - lots of extra skin - so it was pretty easy for me. Large scar but no real pain. Usual discomfort with a healing cut but nothing unusual. Only odd thing was the "dissolving" stitches kept popping out above the skin about 2 months after the surgery and I got my GP to remove them.

Keep in touch
Mary
Stage 3

vertramper's picture
vertramper
Posts: 4
Joined: Sep 2010

Talk about it with others that have been there. Listen to the doc and take someone with you when you do talk to the doc. I only heard about half of what they ever said to me so my wife would fill in the blanks when I regained consciousness. This will change your life, your mental health is just as important if not more. When you settle on a treatment do lots of research and know all the in’s and out’s. vertramper@aol.com Bryan

Shines
Posts: 15
Joined: Jul 2010

Do you have the lab results back. You can request a copy. Thats what I did with my husband. Had him sign a paper saying it was okay to fax them to me. Then went to a website I had found and typed in what it said as I couldn't reallly understand most of it. They replied back within a couple days telling me what it meant in laymen terms. The lab report should tell you the depth of the melanoma. My husband is doing fine now. No treatments as his sentinel biopsy came back clear. We just go back to San Francisco every six months for now to make sure it hasn't come back.
I can't say I blame you for not wanting to take your daughter to the hospital. I sat one day waiting for my dad's surgery and by the time I got home I was sicker than I had ever been. With my husbands surgery I took him in, got the paperwork done got him set up and while he was in surgery went to lunch and took a walk around SF. I had given my cell number to the doctors/nurses and anyone else that would take it so they could call me when he was done. Worked out perfect to meet the doctor etc. Remember it doesn't matter how you work it out as long as it gets done.... As for telling family members I think I would let them know either way so they can be aware.. Family history etc. I now take my three kids to the derm on a regular basis to make sure nothing like this happens to them.
Best of Luck and keep in touch.
Suzi

cubsgirl21
Posts: 12
Joined: Sep 2010

Chris doesn't have his lab results from when he had his mole removed. I told him to call his doctor and have them mailed here. Chris has been put to sleep before when he had his wisdom teeth removed and he had no bad reactions or nausea. If it were me, I do get nausea from whatever they give you to put you to sleep. When I woke up after I had my wisdom teeth removed, I threw up. ;-(
Yeah I think i'm going to stay home and just drive to the hospital when my daughter wakes up from her nap. I'm also going to tell Chris to give the doctor my number to call if they need to. If i take my daughter with me without a nap all day, there will be major problems. I don't really don't want my friend that's going to drive with me to watch my daughter because i'm not comfortable with it. She's a good friend but It makes me uneasy to leave Sophie with her. Chris is definately not going to tell anyone unless it's serious. His family lives in Canada and my family is 5 driving hours away. You're right though....it doesn't matter how it happens, the thing that matters is that he's getting it taken care of and it's not like i'm leaving him at the hospital all night. I'll take care of him when he's home like I do anyways. ;-)

Shines
Posts: 15
Joined: Jul 2010

Sounds good. Please make sure to keep us informed on how he is doing. Wishing you the best...
My only concern is not telling anyone even if everything is okay. It's important especially for the family to know as maybe it would make them more aware of how dangerous skin cancer can be. My thought is that it can be hereditary (sp?). If by telling family it might prevent someone else from having to go through this. Totally your decision thou.
As for Sophie, mothers instincts are usually right and if you don't feel comfortable leaving her with your friend please don't....
Again, good luck and keep in touch.
Suzi

cubsgirl21
Posts: 12
Joined: Sep 2010

I think he will tell people after this is over. From his family history, there's no one he knows that had skin cancer. Chris is a golfer and in the five years i've known him, he's had some bad sun burns. I always tell him to use sun screen and he just shrugs it off. He knows now to check himself for any changes and i'm doing the same. I usually stay out of the sun all together because i burn easily and i'm naturally white as a ghost. I will definately keep you guys updated with what's going on. It's good to write this all out because I have no one else to talk to about this. Chris doesn't like talking about it at all. ;-(

cubsgirl21
Posts: 12
Joined: Sep 2010

Chris doesn't have his lab results from when he had his mole removed. I told him to call his doctor and have them mailed here. Chris has been put to sleep before when he had his wisdom teeth removed and he had no bad reactions or nausea. If it were me, I do get nausea from whatever they give you to put you to sleep. When I woke up after I had my wisdom teeth removed, I threw up. ;-(
Yeah I think i'm going to stay home and just drive to the hospital when my daughter wakes up from her nap. I'm also going to tell Chris to give the doctor my number to call if they need to. If i take my daughter with me without a nap all day, there will be major problems. I don't really don't want my friend that's going to drive with me to watch my daughter because i'm not comfortable with it. She's a good friend but It makes me uneasy to leave Sophie with her. Chris is definately not going to tell anyone unless it's serious. His family lives in Canada and my family is 5 driving hours away. You're right though....it doesn't matter how it happens, the thing that matters is that he's getting it taken care of and it's not like i'm leaving him at the hospital all night. I'll take care of him when he's home like I do anyways. ;-)

cubsgirl21
Posts: 12
Joined: Sep 2010

ooops sorry about the two replies there. Chris just called me and said he just talked to the hospital and he said asked more about the melanoma he has and it's called insightu (sp) melanoma, which means it's on the surface i guess. Also, he's not going to get knocked out just a local anestestia (sp). After that, they'll go from there and make sure they got all the cancer out. I asked him if they said anything about a 2, if it's level 2 and he doesn't know. He's the worst at getting information. ;-( They told him that he can't do any physical work for a while since there will be stitches in his chest. So that's all the info i have now. I've been praying every night about him so i hope that help.

washoegal
Posts: 45
Joined: May 2010

He owes you a great night out and a huge apology for worrying you so much! He may have heard a Clarks Level 2 at some time, which is different from the staging but I would doubt that this would go along with a in situ Melanoma.

"The tumor is confined to epidermis and has not entered the dermis, a deeper layer of the skin. This stage of melanoma is also called Melanoma in situ. The tumor and some surrounding tissue are removed surgically. Usually no further treatment is necessary; however, continued skin examination to evaluate for a new melanoma or other skin cancer will continue."

Mary

cubsgirl21
Posts: 12
Joined: Sep 2010

Yeah i agree with you about him taking me out to dinner. I wish he would listen better. He definately is going to check himself often now. I think U of M told him he has to come back every once in a while to get checked again. He has a few other moles that he's going to ask about when he goes as well. They don't look like what the other one looked like, but he's going to ask about it anyways. I've been checking myself and my daughter lately more than usual. ;-) She doesn't have a spot on her and i have a few freckles, but nothing of concern. I hope Chris's surgery goes well. The thing i'm worried about is the spot where his mole was. It's right in the middle of his chest so there's not much skin there until you hit bone, so it's a really thin area. ;-(

Shines
Posts: 15
Joined: Jul 2010

Sounds good. Or better anyways.
I think Chris will be okay from the wide excision, its amazing what they can do. My husbands was also on his chest but more in the fatty area. I think Mary was right sounds like he might of heard Clarks Level II. Which is so much better than stage II. Sounds like you caught it early. Which is GREAT. My husband is also a big golfer and now that he has gone through this he is always putting on the sun screen. (Tell Chris SUNSCREEN!!!!) Never did before as he never burned. He's always tanned. Not like me with red in my hair and freckles galore. Would of thought it was me that would of gotten it. Just goes to show you never know.
Take care.
Suzi

cubsgirl21
Posts: 12
Joined: Sep 2010

Hi everyone. Sorry it took so long to update everyone. Just have been busy the last week. So he went to U of M and the doctor there told him they downgraded his diagnosis to having just abnormal cells. It wasn't even Melanoma anymore. I'm not sure it was even clarks level II when his primary doctor diagnosed him. Chris doesn't listen very well. So they stil had to cut some skin off his chest around where his mole was. He has some stitches there and looks like he had open heart surgery. ;-( I think there's like 15 stitches there and he has to get them taken out in a week. He was awake when they were cutting him and he said he felt nausious...he said it was more mental though just the thought of them cutting his skin. ;-( He did fine though and everything went smoothly. They tested the skin they removed and it came back all clear. ;-) I don't know if he has to go back every once in a while to get tested again or what. He also never really wore sunscreen, so now i'm going to make sure there's sunscreen in his golf bag and his car and everywhere in the house so he doesn't forget. ;-) Thanks everyone for your support and yes i know Chris needs to write things down when he's talking to the doctor. U of M was also very nice. Everyone was very friendly and Chris said when his surgery was over, there was a table out with all this food out for patients to eat. Bagels with cream cheese, cookies, etc. ;-) His doctor was Jeffrey Orringer. God bless and good luck to everyone. I usually stay out of the sun because i'm so fair and burn easily, but i will definately wear sunscreen anyways as much as i can. ;-)

Shines
Posts: 15
Joined: Jul 2010

Happy Happy Happy....
So good to hear good news.
Take Care

NAD
Posts: 6
Joined: Oct 2010

Hi there
reading all the messages you all sound quite knowledgeable in the subject. I need to find a specialist in the USA for a dear friend who has just been told he has stage IV melanoma . He lives in the UK and was hoping to go on a trial for a new drug Brim 3 but apparently he does not have the right type of melanoma for that study, his tumour is "braf cell "negative. can anyone recommend a specialist melanoma oncologist . the USA is much more ahead than the United Kingdom for cancer treatment .
Can anyone help please?

washoegal
Posts: 45
Joined: May 2010

There are quite a few Specialists, but for many trials you must have failed a treatment first. It would be helpful to know if he has a preference as to where in the U.S., does he have relatives over here or know someone he can stay with during treatment. Your friend was tested for one type of Melanoma - BRAF and he does not have that type. If there is no one to stay with, I would suggest seeking out an trial that matches his/her needs, Go to Clinical Trial Finder on this site, then choosing the appropriate doctor from there. It will be terribly expensive to come to the U.S. for care even in a clinical trial.

Plucas
Posts: 5
Joined: Sep 2010

Don't know if you have a area of the country that your friend wants to come to.But I would recommend Moffitt Cancer Center in Tampa Fl. Dr. Weber is one of the nations top doctors for melanoma.My wife is stage IV and is on ipilimumab and is doing great.www,moffitt.org Good luck,and TAKE CARE

driverclark
Posts: 3
Joined: Oct 2010

I was in an Ipi trial 3 years ago and am still here.
I am wondering how long your wife has been doing well?
I find that I am having a hard time "moving forward" now that the dust has settled.
My oncologist says he has no idea how long (if not forever) the tumors are undetectable.
I get scanned numerous time a year.
Looking for people in my boat.
Thanks and good luck to your wife!

driverclark
Posts: 3
Joined: Oct 2010

Hello NAD,

Have your friend go to any of Boston's Cancer Hospitals or go to NYC to Sloane Kettering.
I am 43 and I have/had stage 4 metastatic melanoma to distant sites including my brain. I was supposed to be dead quite some time ago.

I was in a clinical trial at Dana Farber where I received chemo. and Ipilimumab - my tumors became inflamed and then disappeared - that was almost 3 years ago. My oncologist just told me that Ipilimumab is supposed to get FDA approval by December. There also a few different BRAF mutations in trials I have a "K" mutation someone else might have an "E" mutation these newer drugs/inhibitors work somewhat selectively.

All I can say is I'm still here after one dose of Ipi (I got kicked off my trial - liver issue). Best of luck to your friend and be persistent!!

Plucas
Posts: 5
Joined: Sep 2010

Hello, Driverclark my wife's melanoma was found in her sinus 11/05/08 her birth day.She had three months of radation and pet scan was O.K.By 05/20/09 it had went to both kidneys and liver.Started at Moffitt in Tampa with Dr. Weber 06/09 went on bio-chemo(5drugs plus IL-2 )for 6 months tumors had shrank by 50% went on maintiance with IL-2 and Leukine injections for 3 months.Scans showed tumors growing agian so we stopped that.Went on ipi 05/10/10 did one cycle scans showed regresssion so Dr, Weber gave her 12 weeks off she takes no pain meds only meds for nerves and depression.She has gained all her weight back is doing work around the house is working out with light weights for her arms and sqweezing a foam ball for her hand stength.She is eatting good and often tells me she doesn't even feel like she has cancer.I know there are NO guarantees but she is doing great now.We have our next scans 10/22 hopefully everthing will still be heading in the right direction.TAKE CARE !!!!!

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