MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Dhva's picture
Replies 1
Last reply 8/31/2017 - 7:16pm
Replies by: J.bun

New lump (4x3x4 cm) found on 8/5. (Dark freckle noted in surgical site of primary 7/15).Positive PET scan 8/15. Appointment with surgical oncologist 8/24.  No communication from oncologist and results from tests found on the patient portal. Waiting to find out a surgical date. How long does it typically take to set up surgery in a case of probable recurrence?

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Anonymous's picture
Anonymous
Replies 11
Last reply 9/1/2017 - 9:43am

I've had this dark mole on my shoulder for about 7 years. Last year the derm diagnosed it as sebhorrheic keratosis. Since then, it looks a little different, developed a dark red border and made me nervous. It's small. About 3 mm, on my shoulder and dark, almost black. It's a tiny bit raised. A new dermatologist today said it looked concerning and removed it. I asked her if she thought it was melanoma but she did not give me answer. I'm very worried to the point I can't eat, sleep, work. How would I know if it's nodular? It never grew in size for the past 7 years, just developed this reddish border. I have horrible anxiety. I don't know what to do.

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Jabujj's picture
Replies 14
Last reply 9/12/2017 - 6:57pm

Hi ladies and gentlemen,

It has been a couple tough weeks for my fiance and I.

Just to recap on some stuff and timeline.

My fiance had a punch biospy done at the start of Aug, recieving the news that she had melanoma within the first week of aug.

We ended up getting a slightly more thorough copy of the biopsy report.

Breslow .88 , mitiotic rate 1, Clark level iv. No ulceration, no signs of vascular invasion,satlllite mets or regression.

Deep margin: clear

Lateral margin: some superficial spreading melanom left in situ

Special notes: A SLNB is reccomended due to patients age (under 28) and the deeper dermis invasion of the original tumour.

We have a surgery date booked at the top cancer hospital in Canada for early october, it just seems like such a long wait (a little under two months from when the referall was sent out). I understand her stats dont put her at the top of the priority list,....but the wait is very hard (day by day as Bubbles mentioned) and does seem long.

Sometimes we debate going to a more local treament center (not necessairly specialist) that would do the SLNB and WLE but there is the scary thought that if she needs follow up treatment (god forbid), the Toronto hospital is the place we would want to be.

What is the reason for such a long wait? One of the  doctors we saw explained it to us that, usually with the initial biopsy and the main tumor being removed, there is way less chance of the cancer going to the lymph nodes after...basically saying that the time between the initial biopsy and the surgery is not as important (as Janner alluded to as well).

Bubbles and Janner mentioned about taking the time, even if it is extra, to set up things how you want them set up....its just so hard the wait, especially when I see  people posting on here, frusterated about having to wait 2 weeks till surgery.

Can someone talk this through with me again. Just need some outside perspective, as worried thoughts and tiredness cloud my judgment.

Thanks

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/30/2017 - 11:04am

Just wondering if anyone else has experienced headaches while on this combo?

Thanks.

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While having a biopsy on my butt today (laughs allowed), my derm asked me if I used a roll-on or a stick deodorant.  He said a study out of Europe indicated using a stick deodorant allowed you to feel enlarged but not painful nodes easier than you might otherwise do.  So if you're not that picky on the type of deodorant you use, and your melanoma location might drain to your axilary nodes, a stick brand might be a simple self-check tool.

http://www.MelanomaResources.info

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jbronicki's picture
Replies 9
Last reply 9/2/2017 - 9:45pm

Hi all,

Sorry, haven't been on in a while after Josh passed away, just too sad.  But we just came through Harvey here in Houston and rain has stopped.  We live just south of the Med Center where MD Anderson is located. I know MD Anderson had to evacuate and not sure if there are any patients from the board that need place to stay or help of any kind.  The roads should clear soon and my husband and I can help with anything that's needed, transportation, food, extra room, coordination help etc.  Not sure if anyone from the board are currently getting treatment here, but if you need anything, please feel free to email me at jbronicki@gmail.com or jbronicki@uh.edu.  

Hugs

Jackie

 

Jackie <3

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/29/2017 - 8:20pm
Replies by: Nemesis, jennunicorn

I really am thankful for all the support this website provides and I would like to use this post to kind of vent and ask for support and see what others have experienced. 

This post is about a relative. 

32 y/o female notices a strange mole on hip in May of 2017. Within 3-4 weeks went to dermotologist and had a biopsy done. Results came back as melanoma depth at least 0.71MM, superficial spreading, (I am sure I getting this wrong, negative ulcaration?). Doctor said this is the best possible news and she should have it removed via WAE, biopsied, and then be re-examined every 6 months. Nothing further needed. No sentinal node biospy needed. The office could not book the WAE for 6-8 weeks so we decided let's get this out of her ASAP and went to a different dermatologist. The day of the initial appointment he did the WAE and send it out to biopsy. When we got the results back the final depth ended up being 0.95mm with CLEAR MARGINS and he said she probably did not need it but just to be ultra safe go to a sentinal node biopsy but the chances were very slim they would show positive. 

Went for the sentinal node and they injected the dye and found 3 nodes, removed them all, and yes you guessed it they ALL came back positive. Doctor said this is extremley rare and he was shocked. Now we are waiting for PET scan and Brian MRI results. Obviously super scared and nervous. It seems insane that this < 1mm superficilal mole with clear margins has now possibly caused who knows what. I know we won't have a plan of attack until we get the full results back but we are expecting the worst and want to know if anyone else has gone through this and what to expect. Thanks so much for your time! 

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Jewel's picture
Replies 2
Last reply 8/30/2017 - 12:40pm

Hi there,

My husband just got the latest results from his scans. The good news is the Oncologist told us that my husband is stable, no melanoma. He precedes to tell us a 1-1/2 in mass has showed up on my husband bladder which for some reason he thinks has very little chance of being melanoma. My husband also has an enlarged prostate. An appointment is being made with an eurologis asap. Not sure what to think of these results but if it isn't melanoma then that would put us at 2-1/2 yrs NED with Yervoy. Trying to remain positive. Thanks for listening.

Jewel

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Jimchief's picture
Replies 9
Last reply 8/29/2017 - 2:35am

My Derm told me my nickel-sized mole was "probably melanoma" and based on the sample he took as a shave biopsy it was "probably more than 4mm thick." 

Pathology came back today, and he was right on both counts--T4b officially. As I understand it the next step is to get the entire tumor removed and then check on sentinel lobe and some other lobes.

Some hopefully easy Q's: 

(1) Because the Derm did just a "shave biopsy" (and it's clear he didn't attempt to take all of it because it's just a shave), I'm assuming that what this pathology report (i.e. from the shave biopsy) says about "margins" is basically meaningless? In other words, when you're interpreting margins, I assume that's germane only after they cut out the entire tumor so the pathology gives you some sense as to whether they "got it all"?

(2) Lingo Q: When I go do the surgical oncologist and he/she cuts out the whole thing, am I right that what folks here refer to as a WLE? Wide Local Excision? I assume that's what they'll do? And if so, am I right that there will be a NEW pathology report that talks about "margins" and what that report says help us to know whether they got it all?

(3) Sentinel Lobe stuff: What all is involved in that? I'm assuming the WLE and this test are basically out-patient? Is there anything about those procedures that should make me plan to be out for a few days, or is it the type of thing where physically you bounce back that day and can go do whatever you had planned to do? (I know that I can ask all this of the surgical oncologist, but I may not hear from them until later this week and it'll probably be 2-3 weeks before I get in for the WLE and SN biopsy per my Derm's office.)

Thanks to all who read and monitor. or answer It looks like, depending on lobe involvement, I'm Stage IIC at best or Stage III or IV at worst, but I'm going to assume and hope for the best until I hear otherwise. I'm so thankful there's a place like this where I can express my concerns and get some answers from those who have trod down this path before. I hate to wait, and it helps me psychologically to scout out some of this info so that I know how to work my way through the minefield. Thanks again for your help.

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Scooby123's picture
Replies 17
Last reply 9/20/2017 - 3:20pm

Hi all hope you all are good as can be expected. Please can who has had or on keydruda give me there experience with side effects. When started and what. I have only had 1 dose not much side effects apart from little upset stomach and strange pins and needle feeling in arms and hands on and off. I am off for second dose Tuesday coming. The consultant said it can interfere with the nerves.

 

Scooby❤️

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kp23's picture
Replies 6
Last reply 8/27/2017 - 7:29pm
Replies by: kp23, Janner, Anonymous

Hello...a little background before my question.

End of July I noticed a spot on my right thigh - not a mole and not a freckle - a little bigger than a freckle, but smaller than a pencil eraser. It has been there my whole life, but I noticed it seemed to be darker. Didn't notice any new colors, and there was no change in the size at all, just seemed darker than normal. I kept an eye on it, and of course poked around at it - because, anxiety - often to assess whether the texture/feel of it had changed (it had not). Then a couple of weeks later, I noticed it seemed just slightly raised...scratched and poked it and was able to kind of peel away a layer. No blood or oozing, and a thin scab formed after. A week later, I saw my dermatologist. Scab was still partially there - showering had washed away part of it and underneath was pinkish skin. 

Dermatologist did a shave biopsy, and results came back last week benign. I have not read the full path report - I spoke with my dermatologist over the phone and she explained it was a benign sun spot according to the report. I did check with the lab to verify that it was a dermapathologist who did my biopsy. My dermatologist is going to have their in house dermapathologist look at my biopsy, too, for peace of my mind. 

Here is my question - not sure if it's crazy, but I've been feeling super anxious and need to ask it. Is it possible for a path report to be wrong? What if this happened to be a fast growing melanoma that grew downwards quickly...would it be possible for there to be no more atypical/cancerous cells at the surface, therefore resulting in an incorrect diagnosis of the biopsy? Does that even make any sense? My dermatologist told me not to worry, but I am so worried! My fear is what if the path report is wrong, and the cancer spreads and game over. 

Thank you in advance to anyone who takes the time to respond. I deeply appreciate it. 

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Kristi A.'s picture
Replies 5
Last reply 8/27/2017 - 10:35pm

HI guys! Haven't posted in a while but I was wondering if someone could help me out with something. I've been having a bruised pain feeling on my left ribcage for about a week(same side as my melanoma-stage 4). Doesn't seem to be getting better and I don't remember doing anything that could have caused it. Hurts to touch it, twist top part of body and when I'm stretching. I do not see any obvious bruising or redness on the skin, just bruised pain on the inside. So my question is is has anyone had any mets to the ribs and if so, what was the pain like or how did you know you had a met there? Just a little worried and hoping to hear others experiences. Any thoughts or ideas are greatly appreciated. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/7/2017 - 11:54pm

Anyone have any experience with large tumors in abdomen area?  My husband was rushed to the ER last week with the starting of a distended abdomen and other symptoms. He was clear 3 months previous. Very very scary and in the hospital for a week. He is now on Taf/mek. 

Any info would be appreciated. 

Thank you. 

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Hawthorne7304's picture
Replies 2
Last reply 10/13/2017 - 3:27am
Replies by: jetdoctor67, Anonymous

Hello! I was diagnosed with Superficial Spreading Melanoma 2 weeks ago. This past Monday I saw a plastic surgeon who will do the wide excision and sentinel node biopsy. My derm did a shave biopsy, the pathology report showed 0.82mm thickness (although I'm feeling like that's probably not accurate given the shave biopsy), cells are showing mitosis and the borders were not clean. This thing came out of nowhere and grew FAST. My biopsied spot has healed and as of two days ago just appeared dark pink. Tonight I noticed it's black again and looks larger than before!! My surgery is schedule for Sept 5th and I'm afraid that's too long to wait. Is this normal to wait this long or should I call and push them a little? I'm 39 and a mom to two little ones and this is all I can think about. 

Thank you for your feedback!!

Noel

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mjanssentx's picture
Replies 5
Last reply 9/2/2017 - 10:18am

...I never know if I should post good news at this point but you know what, good news is good news.  For newcomers, I was diagnosed as a 3A patient 2.75 years ago.  I was one of the last patients to get Interferon.  At the time, it was the only approved treatment for Stage 3 patients...but I survived it after a pretty miserable 2015.

Anyway, after 2 years of quarterly PET scans and annual brain MRIs I continue to show no signs of reoccurrence (NED if you will)....got my last scans 2 weeks ago and did the happy dance.  My underarm still hurts where they did the full nodal removal but I can live with that.  More importantly my confidence and attitude toward life in general has improved dramatically.  My son got married a few months back...and my wife look forward to planning an extended life together after 32 years of marriage.

Just wanted to post to encourage others that have been diagnosed recently and are scared to death like we were.  I used to cry myself to sleep for almost 2-3 months after being diagnosed, lost 25 pounds, and clouds were out everyday.  Looking forward to Yellowstone next month...

Stay strong.

Michel

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