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Thread: Vaginal Mucosal Melanoma

  1. #21
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    I'm hoping for some help understanding the pathology report. Seems like a mix of good and bad news.

    Good - lymphnodes were negative for malignancy.

    Bad or don't know

    AJCC pathological stage is pT4 N0
    Total tumor size is greater than 4cm and no clean margins.
    Mitosis 2-3 per mm2

    Any help interpreting this would be great. Want to send us to another specialist at OHSU but can't get in for 4 weeks.

    TIA - Deena

  2. #22
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    Deena, that is extremely good news about the lymph nodes. With mitosis, the lower the better. 0 is best, 2-3 is not bad, I have seen mitosis rates of 11. As far as the pathology report, does it tell you the specifics? Is there ulceration? Regression? Have they told you why they were unable to get clean margins (I assume anatomy/location) and are they going to go back in for margins, or is this the best that can be hoped for? Can you reproduce some of the actual wording from the pathologist report?

    I am not an expert but I will do my best to help make some sense of it.

    Cheri
    Last edited by CheriD; 08-01-2015 at 04:02 PM.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  3. #23
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    Thanks Cheri -

    "The tumor exhibits a nodular growth pattern and is centered within fibroadipose tissue with extension toward but not directly involving, the overlying aquamous epithelium. The tumor cells form nests and are amelanotic, spindled to epitheliod, with focally prominent nucleoli. Tumor cells stain strongly positive for Melan-A and weakly/patchy positive for S-100, supporting the diagnosis of melanoma. Greatest tumor size on a single histologic section is 1.6 cm, however because the tumor is present in histologic blocks the total tumor size is approximated as at least 4 cm. Pathologic stage varies based on primary tumor location (primary mucosal vs. primary skin vs metastatic), which cannot be adequately determined from this specimen. Assuming melanoma of the skin, the AJCC Pathologic stage is pT40 N0. There is no formal pathologic staging system for primary mucosal melanomas."

    Most of the specifics say indeterminate - such as size, depth, thickness, etc. I know the original biopsy was of ulcerated tissue. This pathology lists ulceration as indeterminate. Periphreal margins : positive for invasive melanoma.

    It is my understanding they were unable to determine the depth and /or thickness because it exceeded the margins.

    I was expecting more info. Was surprised that there was no genetic testing.

    Thank you for looking at the info.

    Deena

  4. #24
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    Hi Deena,

    With so much being indeterminate, I will be interested to hear what the specialist says about clarifying some of this. In my case, when there was lack of clarity, my surgeon sent it all off to another, more specialized lab for a second opinion.

    The negative factors are tumor depth, mucosal type, and the presence of ulceration on the earlier biopsy, though it wasn't evident here. It will also be important to establish why the lack of clear margins (outside the area of the urethra), and more importantly, what can be done about this (e.g. re-excision, radiation to the area).

    The factors definitely working in your mom's favor are the fact that she has clear lymph nodes and clear scans.

    Your mom's melanoma would stage IIC using the numbering system. I am not positive but that may be why they did not do further gene testing since your mom is not stage III (lymph node involvement) or IV and would likely not be a candidate for immuno or chemotherapy, but this is something to ask about. Please take all of this with a grain of salt and realize that the specialist may correct me on any of this! Especially because your mom's melanoma is mucosal and I'm not sure if we are treated differently than cutaneous at different stages.

    I hope your mom is doing well after her surgery! You have both been in my thoughts a lot. Make sure you get clear answers and I will always try to help where I can. I can only imagine how frustrating this all is. Your mom is so blessed to have a daughter like you!

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  5. #25
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    Cheri,

    Her post surgery recovery is going better than I could have ever imagined. She has been off pain medication since 3 days after surgery. Her drainage has reduced by half but still no where near the 25ml a day mark when we can remove the tube. I'm doing injections in her stomach every night of a blood thinner and we have much less bruising than we had anticipated. She is diabetic, has high blood pressure, and has a lot of mobility and weakness issues due to polio as a child. Right side has partial paralysis and all of the these years later the left side is getting worn out from over compensating for the right. Despite all of that she is really doing great. I'm so thankful for her positive attitude.

    At this time we are due to go back to OHSU on Thurs Aug 6 to see the original surgeon. Dr Pajovek she is a gyn/onc specialist. Dr. John Vetto is a derma/onc who has a special focus on breast cancers and melanomas. He removed the lymph nodes and was supposed to be involved the the what's next plan. There was also a urologist in surgery but he was primarily there for just in case. Dr. Pajovek had said we would do radiation and probably immunotherapy as follow up to surgery but she would know more after meeting with our team to discuss the pathology reports and options. Our local oncologist said she did not want to do radiation as melanomas do not respond to it. At that point she wanted to refer us to Dr. Matt Taylor at OHSU who is running 2 melanoma clinical trials.

    http://www.ohsu.edu/xd/health/servic...?personID=2169

    That is a link to his info and the information on the 2 clinical trials he has going. In reading his clinical trial information it seems to me that my mom does not meet the requirements since she is not stage 3 or 4 at this time.

    The amount of time all of this takes has been the worst part. I work in veterinary medicine and it is common for us to make an appt see a tumor remove it same day. We receive pathology results next day and when follow up treatment is called for we have the chemotherapy plan ready to go and in the office within 48 hours. It just kills me that human medicine has gotten so slow. 10 years ago my masseuse felt a mass in my abdomen during a massage on a Fri. I was at the Dr. on Monday. Had my imaging work up that same week. At the specialist the following week and in surgery 1 week later with a team prepared to do a pelvic exenteration if needed. In less than 3 weeks I went from being told my tummy felt strange to surgery. I just don't understand how the system has gotten so screwed up. It ended up being a fibroid the size of a basketball in my uterus. So I had a hysterectomy at 32. Was sorry I missed my chance to have kids but so thankful for the fast action when they were unable to determine what it was without getting in there. That was for something that might have been bad. My mom has something that is downright terrifying and I don't think they could move us through the system any slower.

    Sorry about the long rant I am just truly shocked by the medical system. I know what is possible and just isn't being done. I so appreciate your kindness and willingness to offer your support. You have truly been my only positive lifeline in all of this. Thank you so much.

    Deena

  6. #26
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    Hi Deena,

    I am so glad your mom is doing so well after surgery! She is actually doing much better than I did, and I was otherwise healthy. I had pretty severe pain for at least 5 days with all 3 surgeries, though the first one, which was the radical vulvectomy, was the worst. I am always accused of being stoic, but all I can say is vulvar surgery was no walk in the park. A nurse once told me it is one of the most painful surgeries. I'm not going to disagree as it reduced me to tears more than once. I can't imagine vaginal surgery would be all that different, so I think your mother is an inspiration! And I remember walking around with my drain for weeks, though mine was inguinal from a complication of my lymph node surgery on the left. It took an unusually long time, so I was told, for the amount to finally trickle down to where they could remove it. I would wear it in public under dresses and tape it to my leg!

    I just don't know why some of us have a slower system to work through. I was on another melanoma forum recently where someone was asking about scan wait times, and people were saying that they had their scans in the morning and saw the doctor in the afternoon and received their results the same day! One of them was being seen at MD Anderson, not sure about the others. This in contrast to me, who has a scan on a Friday and does not get the results back until the following Thursday, and they won't tell me over the phone either. They make me come in! But as far as my initial diagnosis and surgery, things went fairly quickly for me, like they did for you with the uterine fibroid.

    So my impression now is that this varies between hospitals and specialty centers. There are also people who say they call constantly and will not give up before being given results or scheduling an appointment. Some say the only way to get things moving is to take the initiative or be the squeaky wheel. I have not had to be the squeaky wheel, which is good because I'm terrible at it and my version of being squeaky does not usually work in my favor, but I will say that having melanoma made me realize how often a person with a serious illness has to be their own advocate, squeaky or otherwise, and it has definitely made me more assertive. I just wanted to mention it because it was a real awakening for me.

    Some examples: I did not even know I had mucosal melanoma until I made an appointment for myself with an oncologist later that summer and she explained to me the difference between mucosal and cutaneous! I thought I had stage I cutaneous melanoma all that time with an excellent prognosis. I know another woman with vulvar melanoma who was initially misdiagnosed and lost months of precious time before someone finally thought to do a biopsy. By then, the melanoma had grown and she had lymph node involvement. It is just infuriating when you think about it. And I had a dermatologist who did not want to biopsy a changing mole on my son's abdomen, saying it was benign and a biopsy would be a waste of time, and was very rude and condescending about it. But I insisted and the mole came back pre-melanoma. And he still was condescending! So I found a new dermatologist.

    Anyway, I don't tell you this to alarm you, and maybe it's something you already know. Before melanoma, I was not a person who spent a lot of time in doctor's offices, so I admit to being fairly naive. I have decided I much prefer physicians who are not overly laid back and cavalier, who over-react as opposed to under-react, who take my concerns seriously, explain things thoroughly, and who are willing, if it comes down to it, to humor me with kindness.

    I have to tell you I was a little surprised by the oncologist's view of radiation as ineffective against melanoma. I wonder if I am misunderstanding that somehow. My friend, the woman mentioned above, is seen at a major melanoma specialty center and had radiation to the vulvar region for local recurrences, and had I not undergone the third vulvectomy, my doctors were recommending radiation to try to eradicate the melanoma in situ. I will have to check into this.

    It turns out I really only needed one doctor: my gyn-onc surgeon, who is an oncologist specializing in exactly what I have, a gynecological cancer, and is also a surgeon, and maybe a dermatologist. But I actually did not realize that in the beginning and self-referred to the oncologist I saw months later, who explained to me that I had mucosal melanoma. She then referred me to a dermatologist. I now see all three of them regularly for vulvar skin checks (the surgeon), blood work and scans (oncologist), and whole body skin checks (derm). I have also established care with a melanoma specialist who I have seen only once so far, but who provided me with treatment guidelines the other physicians have been willing to follow. They each have at different times found things the others have missed or just interpreted differently, or they have held opinions that are outright contradictory - in which case I have felt fortunate to have multiple opinions and will side with the majority, with the opinion of the specialist rating highest with me. The moral of this long rambling story is that I have been at various times grateful to have all them. I guess my point here is that it is never a bad thing to have more than one opinion, or more than one set of eyes looking at a medical chart, especially with a disease where little is known, like this one.

    Well, I hope you find this helpful and not worrying. I feel strongly that it is better to be forewarned, but the last thing I want to do is add to your stress. I am SO glad your mom is being seen at a specialty center.

    One last note: I don't know of any clinical studies that are not looking for people with stage IV melanoma. I have read that occasionally there are studies that include people with stage III. I have never heard of anyone with melanoma under stage IV being treated with immuno or chemotherapy drugs. Your oncologist may have been discussing those studies on the chance that your mom staged higher.

    The way it was explained to me is that surgery is always the first, and best, line of defense. Where that falls short, whether due to inadequate margins due to location or because of numerous local recurrences that might make surgery unfeasible, it can be followed by local radiation. Long-term, for those of us who stage I or II, our treatment plan usually consists of frequent close followup and regular scans or x-rays at fairly close intervals, though how close seems to vary between specialists. There are some who still offer interferon, though it is now highly controversial. My oncologist swears by it as she says she is European and says it is still practiced widely there, even for stage I melanoma. My specialist said it is old school, the risks/unpleasant side effects have been shown to outweigh the benefits, and very few physicians recommend it anymore. Again, I am not sure whether there are specialists who treat mucosal melanoma differently, but I hoped maybe it would be helpful to share some of my experience.

    Your mom sounds like a really strong, incredible lady who has been through so much.

    It sounds like you will find out about the plan on Thursday. I will be thinking of you!

    Best of luck!

    Cheri

    ETA: Regarding radiation, it appears that melanoma is considered radio-resistant. It is still done in areas where there is concern that some cells might remain after surgery or when the melanoma is at higher risk to recur, if I understand that correctly. Would be a good question to discuss with the specialists.
    Last edited by CheriD; 08-07-2015 at 01:57 PM.
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  7. #27
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    Hi Deena,

    How did things go on Thursday? Hope all went well. Was thinking of you and your mom yesterday and sending good thoughts your way.

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  8. #28
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    Meet with Dr. Taylor today at OHSU he is the melanoma specialist. Do not qualify for a clinical trial. Ideal would have been additional surgery for better margins but he spoke with the surgical team and they feel that is not an option. He is recommending radiation with ct scans every 3 months. He mentioned interferon is something we should look in to but he could not recommend it. I think my mom is getting very depressed. 4 weeks today since surgery and she has no interest in going anywhere. She has lost close to 30 lbs since the end of May. She says food doesn't taste good so she turns most of it down and just picks at what she accepts. She seems so weak and frail now. Also has developed a surgery site infection so started a new antibiotic tonight. I just feel like things aren't going well in general at this point. Dr. Taylor said to come back if/when the cancer has made it to the liver, lungs or bones and he will get her in the clinical trial then. That gives me very little comfort.

    I'm going to New Orleans next week. Business trip with hubby. I feel so bad about going. I never go anywhere but my mom insisted that I go and that she will be fine. Honestly it is the only thing I have seen her excited about in the last several weeks. I have a pet and mom sitter coming to stay and keep an eye on things and my niece is staying with my mom. I've always wanted to go and she is so excited for me. I just feel guilty for leaving her.

    Deena

  9. #29
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    Deena,

    I am so glad to hear from you, I have been wondering how you and your mom were doing. I hope you will go to New Orleans and enjoy your trip. I think it's great that you are doing something like that after the stress and worry of the last few months, and I bet your mom will love to hear about it when you get back.

    I lost a lot of weight too in the weeks and months following my surgery, from 139 down to 118. Nothing sounded good, nothing tasted right, I had no appetite. I was overwhelmed and probably a little depressed. By the surgery, by the diagnosis, by the prognosis and how uncertain it all seemed. I was really, really tired. I too had an infection afterward, mine in my left biopsy area, that landed me back in the hospital for a few days, and then sent home with a drain which I wore for 2 weeks. Hopefully your mom will rally as she gets farther out from surgery. It took me awhile, too. I never did regain all my weight, or even my former appetite, but at least half of it was excess on a small frame anyway. It helped me to eat soups and pudding and rice, just very simple things. It also helped when my husband brought home former favorites from restaurants or when we went out to eat. I do remember that I would pick at it, but I tended to eat more at those times.

    I hope she will consider the radiation and followup scans as she goes forward. My third surgery, last year in May, was to try to eradicate an area of melanoma in situ that we weren't confident we had gotten because of margins. But if I hadn't had the surgery, the recommendation was for radiation to the area, which is what I would have done to try to get any remaining cells in the area. Overall what I have been told about the risks and benefits of interferon did not sound promising, so I didn't choose to do it, for better or worse. But, in the absence of the possibility of surgical cure, radiation and close followup were felt to be my next best option, too. Yes, they told me the same thing, that they would help me get into a trial if I went to stage IV, but 2 years and 3 months later I am still doing just fine, knock on wood.

    Take care, and please let me know how your mom is doing and what treatment plan she decides on. I hope you will go and allow yourself to enjoy what has to be a much-needed vacation! If you were my daughter, it would bring me happiness to have you doing something like that. I bet you would feel the same for a daughter of your own, and it sounds like that is true for your mom too.

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  10. #30
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    Hi Cheri -

    Starting radiation today - external high dose once a week. Also going back to Portland next week to have a consultation with an internal radiation specialist. That is currently being treated as the back up plan. Mom's most recent scan on Fri showed only the original tumor and no spread. So good news and moving forward with treatment. I feel so blessed to have found you - thank you.

    Deena

 

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