The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

More bad news need some help

Forums Cutaneous Melanoma Community More bad news need some help

  • Post
    Linda J
    Participant
    Currently I am recovering from a ingronial LND and the removal of a large tumor on my hip/buttock. When I had my drains and my staples removed the surgeon took out another small lump in my pubic area. Since the i have had six “pimples” come up near my drain wounds. The surgeon called today to say that the other little lump was MM and she is worried that these other pimples are local reoccurances. I see her and a medical oncologist on Friday.

    I need help.
    Are there people out there who have survived multiple reoccurances that pop up after surgery? They are all just surface ones – like right at or just under the skin.
    What are my options for treatment???
    I’m in Canada with princess margaret cancer hospital but should I look for treatment in the states?

    Can I make it through this again?

    Please please help!

    Loading spinner
Viewing 3 reply threads
  • Replies
      MaryMary73
      Participant

      I live in Toronto as well and although my melanoma didn't require an oncology visit, the specialists at PMH are some of the best in North America. People from all over Canada and sometimes the US go there for treatment. Stay here where treatment is optimal AND free. Talk to your doctors about treatment options and rest assured that you are in very good hands.

      My thoughts and prayers are with you.

      Loading spinner
      MaryMary73
      Participant

      I live in Toronto as well and although my melanoma didn't require an oncology visit, the specialists at PMH are some of the best in North America. People from all over Canada and sometimes the US go there for treatment. Stay here where treatment is optimal AND free. Talk to your doctors about treatment options and rest assured that you are in very good hands.

      My thoughts and prayers are with you.

      Loading spinner
        bcl
        Participant

        Hi MaryMary,  I am a canadian stage 1b (1.81mm with a mitotic rate of 3 )  and also have little personal experience with melanoma.  In the past I have recommended an oncologist at a melanoma hospital of excellence (Dr Smylie at  the Cross Cancer Institute in Edmonton). I have done this because I've been to see Dr Smylie (for a second opinion on lung nodules; stable at last scans) and have been in contact with patients he has treated.

        It's obvious you have a high opinion of PHM, and perhaps they really do deserve that.  But once you have been here for a while you will learn that Canadians can get free cancer treatments in the States. If we fit the criteria (usually a specific blood type)  we can even go to the NIH. We can enter clinical trials that may not be available in Canada. And many of these trials scan us – I have read here of Ontario residents having difficulty accessing  PET scans in the past.  (We certainly do in BC. And while I'm on the subject of BC, I'm aware of patients who have been advised to get their affairs in order at stage three. No treatment offered in some cases.  I also know of  earlier staged patients who do not get a  SNB when they clearly should.)

        Did you know we don't  even have a canadian trial data base? Patients have to take what their hospital offers, or network online. Or we can search the US clinical trial site to find trials at home. Melanoma is a complex and unpredictable disease, and because it is still relatively rare, specific procedures are scattered throughout our vast county.  So it can be important to know we can go to other canadian provinces and still receive free medical care. As a matter of fact, I didn't  pay a dime to see Dr Smylie  (other than a plane ride and hotel  -and if we are fortunate, airmiles can be used for that).  My provincial medical insurance would have continued to pay had I needed to pursue treatment;  they already do so for many residents who seek treatment elsewhere. I'm fairly sure Ontario Health has similar policies.

        I guess what I'm trying to say is, while it's great to be proud of your local cancer center  (and very kind of you to reach out to scared patients) blanket reassurances based on limited personal experience are not necessarily the most helpful thing to do on a cancer board. 

         

        I like your quote BTW, very wise, take care, linda:)

        Loading spinner
        bcl
        Participant

        Hi MaryMary,  I am a canadian stage 1b (1.81mm with a mitotic rate of 3 )  and also have little personal experience with melanoma.  In the past I have recommended an oncologist at a melanoma hospital of excellence (Dr Smylie at  the Cross Cancer Institute in Edmonton). I have done this because I've been to see Dr Smylie (for a second opinion on lung nodules; stable at last scans) and have been in contact with patients he has treated.

        It's obvious you have a high opinion of PHM, and perhaps they really do deserve that.  But once you have been here for a while you will learn that Canadians can get free cancer treatments in the States. If we fit the criteria (usually a specific blood type)  we can even go to the NIH. We can enter clinical trials that may not be available in Canada. And many of these trials scan us – I have read here of Ontario residents having difficulty accessing  PET scans in the past.  (We certainly do in BC. And while I'm on the subject of BC, I'm aware of patients who have been advised to get their affairs in order at stage three. No treatment offered in some cases.  I also know of  earlier staged patients who do not get a  SNB when they clearly should.)

        Did you know we don't  even have a canadian trial data base? Patients have to take what their hospital offers, or network online. Or we can search the US clinical trial site to find trials at home. Melanoma is a complex and unpredictable disease, and because it is still relatively rare, specific procedures are scattered throughout our vast county.  So it can be important to know we can go to other canadian provinces and still receive free medical care. As a matter of fact, I didn't  pay a dime to see Dr Smylie  (other than a plane ride and hotel  -and if we are fortunate, airmiles can be used for that).  My provincial medical insurance would have continued to pay had I needed to pursue treatment;  they already do so for many residents who seek treatment elsewhere. I'm fairly sure Ontario Health has similar policies.

        I guess what I'm trying to say is, while it's great to be proud of your local cancer center  (and very kind of you to reach out to scared patients) blanket reassurances based on limited personal experience are not necessarily the most helpful thing to do on a cancer board. 

         

        I like your quote BTW, very wise, take care, linda:)

        Loading spinner
        JoanR
        Participant

        MaryMary, please research more carefully, ON lags far behind in many aspects of Cancer care. Your best bet is to at least call Dr.Smylie at Cross cancer centre in Edmonton. Just the fact that PET scans are not readily available in Ontario should be your first hint. There are very few melanoma specialists in Canada…a dermatologist is not (often)an oncologist, nor is anyone that is an oncologist a specialist in any cancer, there are many many general oncs in the system…which are really just GPs dealing in the cancer system.  Don't confuse information from Cancer Foundations who are collecting money with the actual workings of the cancer agencies.  For instance, PMH say they are one of the top 5 research centres in NAmerica…however if you carefully check on of their criterea, one factor is square footage…what the hell does that have to do with quality of cancer research..just be careful of stats..they change as to whether you are buying or selling…LOL

        Advise from someone like Sharyn should be heeded. …Joan

        Loading spinner
        JoanR
        Participant

        MaryMary, please research more carefully, ON lags far behind in many aspects of Cancer care. Your best bet is to at least call Dr.Smylie at Cross cancer centre in Edmonton. Just the fact that PET scans are not readily available in Ontario should be your first hint. There are very few melanoma specialists in Canada…a dermatologist is not (often)an oncologist, nor is anyone that is an oncologist a specialist in any cancer, there are many many general oncs in the system…which are really just GPs dealing in the cancer system.  Don't confuse information from Cancer Foundations who are collecting money with the actual workings of the cancer agencies.  For instance, PMH say they are one of the top 5 research centres in NAmerica…however if you carefully check on of their criterea, one factor is square footage…what the hell does that have to do with quality of cancer research..just be careful of stats..they change as to whether you are buying or selling…LOL

        Advise from someone like Sharyn should be heeded. …Joan

        Loading spinner
        alexandra
        Participant

        Hello

        I'm from Canada. Specifically from Mississauga, close to Toronto. I was wondering if you could answer few of my questions regarding the Canadian Healthcare. I got a phone call from my dermatologist's office yesterday (7/18/11) saying that I need to contact them immediately and if I can come over that day. Unfortunately I'm in Florida and couldn't make it. They scheduled my appointment for next Monday, but said that we can wait more if I need to stay in Florida longer. I’m cutting the trip short and will definitely be there on Monday. They didn’t want to tell me anything over the phone, but since I insisted the girl told me it’s a stage II melanoma. Now here are my questions:

        1.      Do you know if I’m going to have more skin removed when I see the dermatologist on Monday?

        2.      At stage II should I be talking to an oncologist already?

        3.      The doctor I see is a dermatologist not a surgeon, should the second procedure be done by a surgeon or can it still be done by a dermatologist.

        Any information is greatly appreciated. I’ve been really healthy so far and don’t have any experience with doctors in Canada.

        Thank you!

        Alexandra

        Loading spinner
        alexandra
        Participant

        Hello

        I'm from Canada. Specifically from Mississauga, close to Toronto. I was wondering if you could answer few of my questions regarding the Canadian Healthcare. I got a phone call from my dermatologist's office yesterday (7/18/11) saying that I need to contact them immediately and if I can come over that day. Unfortunately I'm in Florida and couldn't make it. They scheduled my appointment for next Monday, but said that we can wait more if I need to stay in Florida longer. I’m cutting the trip short and will definitely be there on Monday. They didn’t want to tell me anything over the phone, but since I insisted the girl told me it’s a stage II melanoma. Now here are my questions:

        1.      Do you know if I’m going to have more skin removed when I see the dermatologist on Monday?

        2.      At stage II should I be talking to an oncologist already?

        3.      The doctor I see is a dermatologist not a surgeon, should the second procedure be done by a surgeon or can it still be done by a dermatologist.

        Any information is greatly appreciated. I’ve been really healthy so far and don’t have any experience with doctors in Canada.

        Thank you!

        Alexandra

        Loading spinner
        alexandra
        Participant
        Hello MaryMary73-

        I’m from Canada as well. Specifically from Mississauga, close to Toronto. I was wondering if you could answer few of my questions regarding the Canadian Healthcare. I got a phone call from my dermatologist’s office yesterday (7/18/11) saying that I need to contact them immediately and if I can come over that day. Unfortunately I’m in Florida and couldn’t make it. They scheduled my appointment for next Monday, but said that we can wait more if I need to stay in Florida longer. I’m cutting the trip short and will definitely be there on Monday. They didn’t want to tell me anything over the phone, but since I insisted the girl told me it’s a stage II melanoma. Now here are my questions:

        1. Do you know if I’m going to have more skin removed when I see the dermatologist on Monday?
        2. At stage II should I be talking to an oncologist already?
        3. The doctor I see is a dermatologist not a surgeon, should the second procedure be done by a surgeon or can it still be done by a dermatologist.
        4. If I may ask what stage were you since you didn’t require an oncology visit?

        Any information is greatly appreciated. I’ve been really healthy so far and don’t have any experience with doctors in Canada.

        Thank you!

        Alexandra

        Loading spinner
        alexandra
        Participant
        Hello MaryMary73-

        I’m from Canada as well. Specifically from Mississauga, close to Toronto. I was wondering if you could answer few of my questions regarding the Canadian Healthcare. I got a phone call from my dermatologist’s office yesterday (7/18/11) saying that I need to contact them immediately and if I can come over that day. Unfortunately I’m in Florida and couldn’t make it. They scheduled my appointment for next Monday, but said that we can wait more if I need to stay in Florida longer. I’m cutting the trip short and will definitely be there on Monday. They didn’t want to tell me anything over the phone, but since I insisted the girl told me it’s a stage II melanoma. Now here are my questions:

        1. Do you know if I’m going to have more skin removed when I see the dermatologist on Monday?
        2. At stage II should I be talking to an oncologist already?
        3. The doctor I see is a dermatologist not a surgeon, should the second procedure be done by a surgeon or can it still be done by a dermatologist.
        4. If I may ask what stage were you since you didn’t require an oncology visit?

        Any information is greatly appreciated. I’ve been really healthy so far and don’t have any experience with doctors in Canada.

        Thank you!

        Alexandra

        Loading spinner
      Sharyn
      Participant

      Hi Linda

      I live in Newfoundland. I've also had an inguinal LND, and one recurrence after another for the past 5 years. One treatment I did in 2008-09 was PV-10 intralesional injections at St. Luke's Hospital in Bethlehem, Pennsylvania. It was a clinical trial, and the sponsor, Provectus, paid for all travel expenses for me and an escort. The clinical trial is closed, but St Luke's has just opened a compassionate use trial. I don't know if Provectus would be as generous for a compassionate use trial, but no harm in asking.  This treatment involves injections of rose bengal into each tumor. I was responding very well to it, but my melanoma spread to my uterus, so I had to withdraw and have a hysterectomy. Here's a link to the trial: http://clinicaltrials.gov/ct2/show/NCT01260779?term=melanoma+and+PV-10&rank=3   If you contact them, you should ask to speak to Rose Cabral. She's the research nurse, an absolute sweetheart! Good luck!

      Hugs

      Sharyn, Stage IV

      Loading spinner
      Sharyn
      Participant

      Hi Linda

      I live in Newfoundland. I've also had an inguinal LND, and one recurrence after another for the past 5 years. One treatment I did in 2008-09 was PV-10 intralesional injections at St. Luke's Hospital in Bethlehem, Pennsylvania. It was a clinical trial, and the sponsor, Provectus, paid for all travel expenses for me and an escort. The clinical trial is closed, but St Luke's has just opened a compassionate use trial. I don't know if Provectus would be as generous for a compassionate use trial, but no harm in asking.  This treatment involves injections of rose bengal into each tumor. I was responding very well to it, but my melanoma spread to my uterus, so I had to withdraw and have a hysterectomy. Here's a link to the trial: http://clinicaltrials.gov/ct2/show/NCT01260779?term=melanoma+and+PV-10&rank=3   If you contact them, you should ask to speak to Rose Cabral. She's the research nurse, an absolute sweetheart! Good luck!

      Hugs

      Sharyn, Stage IV

      Loading spinner
Viewing 3 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum 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.