Home Forums Melanoma: Stage III I don’t know what to do

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  • #20512
    bubbasmomma
    Participant

    Hi All,

    I’m a 38 year old female. Two weeks ago, I had a WLE and SNB- two sentinal nodes taken, one of which has micrometastasis present, classification N1a and the other was clear. I went to the oncologist today. She told me that they will take the remainder of my lymph nodes from my left groin and do a PET scan. She expects it all to be clear. After that, I will start treatment. My options for treatment are Interferon or I can enter into a study which randomly chooses between interferon (standard treatment that she would give) or two dose options of Ipilimumab. She said that the Ipilimumab is only available through the clinical study. So basically, signing up for the study gives me 2 in 3 chance of treatment other than interferon. My questions are: Do I have to have all lymph nodes removed? Do I have to do treatment? I have a five year old son, so I want to be around for him. And my husband, too. I’m so confused. I’m so terribly sad. I’m also very angry, as I’ve been to the derm two times prior about this same mole. I have my results in front of me, so if there is anything specific you want to know, please ask. Thank you for reading.

    #55684
    cohanja
    Participant

    Sorry you’ve joined us. Maybe more on the pathology would help people answer your questions, such as thickness/Breslow, mitotic rate, ulceration, growth phase, etc…

    #55685
    bubbasmomma
    Participant

    Thanks so much for responding. I had a mole removed from my inner left thigh, close to my knee. The tissue sample was 1.0 x 0.5 x 0.3 cm and the lesion was 0.4 x 0.3 cm.

    My results are this:

    Malignant Melanoma, Superficial Spreading Type, Margins Free

    Depth: 1.05mm

    Ulceration: absent

    Mitotic Rate: 2/mm2

    Angiolymphatic Invasion: absent

    Satellite Deposits: absent

    Coexisting Nevus: absent

    Marked Regression: absent

    A proliferation of atypical melanocytes is present within the epidermis and dermis disposed as nests and single cells.

    #55686
    Catherine Poole
    Keymaster

    Having all of your lymph nodes removed for one micromet in one node is controversial. Studies are looking at this question. Some surgeons will do a partial dissection instead. I would inquire about that as full node dissection can leave you with a lot of residual problems with lymphedema. Your odds are very good that you don’t need further adjuvant treatment, but should be followed closely for the first couple of years. Interferon may become a therapy of the past with these trials and other studies showing it is ineffective. You could enter the trial and if you get the Yervoy continue for any benefit it may have which is known at about 30% with active disease. Interferon does not extend overall survival according to the American Society of Clinical Oncology. So, yes, this can all be confusing and overwhelming, you have to make a decision that you feel good about. Trusting your body and staying in tune with any changes is the key. Keep in touch and let us know what you decide (and don’t let anyone pressure you one way or the other.)

    #55687
    washoegal
    Participant

    Hi, sorry you are going through this. You are facing a decision none of us like. None of the choices are really very good. My mel was 3.7mm deep with a mitosis of 16. I had 2 nodes positive with mico amounts of cancer.

    My first choice was either to have all the rest of the lymph nodes removed or participate in a trail to see if just monitoring nodes worked as well. I wasn’t comfortable with that and chose to remove the lymph nodes. Luckily all was clear. So I am stage 3a. Next choice, Interferon or Watch and Wait. I choice Watch and Wait. I didn’t like the stats on Interferon and I didn’t like the idea of feeling sick for a year. 2 years and 4 months later I am still cancer free. That’s the good news.

    Now some of the drawbacks, minor nerve damage in right arm from from the Complete Lymph Node Dissection, some lymphedema that is easily managed but I had to get on it as soon as it started. All in all I’d say I was darn lucky!

    You’ll find many stories like yours where the cancer was not caught by the derm. The only reason mine was removed was because it itched and I insisted it come off. Let yourself feel all the emotions, it a grieving process. Then you and your husband make the decision that is best for you.

    Good Luck,

    Mary

    #55688
    bubbasmomma
    Participant

    Catherine & Mary,

    Thank you so much for responding. And thank you for sharing your opinion. When I met with the oncologist, I was pretty much in shock. I really wasn’t expecting to hear that all of my lymph nodes need to be removed. She did tell me that she would call a melanoma expert at a hospital in Washington, DC (I’m located about 10 minutes outside of DC). Well, I got a bit of news yesterday that provided me with some hope. The oncologist called me to tell me that she consulted with the melanoma expert and he told her not to do anything with my lymph nodes. He requested the biopsy slide from the hospital and is sending it off for further testing. He said that my case has a possibility that my lymph node tested positive for melanoma, when maybe it shouldn’t have. She explained that it’s possible that I will not have the full lymph node removal and that I may instead be monitored via sonogram. I will meet with the expert in a couple of weeks, once he has the new results back from the lab. She also mentioned that I am NOT eligible for the trial because one of the requirements is that it must be macro rather than micro in the lymph node.

    I must mention that I was skeptical with what my oncologist had to say because she was so young- couldn’t me more than mid to late 30s. But, she proved me wrong! I have a high-level of respect for her, as she went above and beyond by reaching out to one of her prior colleagues and called me to let me know that I may not get the full-node removal, nor the interferon, which is completely opposite of what we discussed. Of course, I could end up with both of these, but I may not. So, for the next few weeks, I will be waiting and not moving on with all of these tests, as they are now on hold. I will check back in to let you know what happens, but that will likely be a few weeks from now.

    Thanks again for listening to me and providing me with support. This is a wonderful forum with tons of information and people that care. It has helped me keep my sanity throughout this process :) and I hope that by sharing my story, I can give back what I’ve received. Thanks again!

    #55689
    Catherine Poole
    Keymaster

    Going to an expert can make all the world of difference for melanoma. There are few experts too! But besides the one in Washington, you might check out Johns Hopkins in Baltimore. they have an excellent program. I am happy your doctor reached out to an expert that is crucial. It may have been the Washington Hospital Center? Anyway, keep in touch and let us know how you are doing.

    #55690
    Linny
    Participant

    Bubbasmomma, if there’s ever anything you’d like to know about the melanoma program at Johns Hopkins, feel free to ask.

    #55691
    msue5
    Participant

    Hi Bubbasmomma

    I am a patient at the Washington Hospital Melanoma Center. I am also Stage 3 but am 3B due to Recurrence in Lt groin node that had extracapsular extension and was present in soft tissue around the node. I have been a patient there for about 2 1/2 yrs. I had a full groin dissection in Jan 2011 with many complications some of which I am still dealing with. I am sure they will send you to WHC Melanoma center. My care there has been great. They have been great about quick responses and will see you very soon if something pops up. I am especially grateful for the Dermatologist Oncologist who is very calming and always gives me the time I need(Dr Venna). If you end up getting referred there you can email me at msue5@hotmail.com and we could then talk on the phone if you wish. I have to say I chose not to do Interferon but did do the full groin dissection. Email me if you end up getting referred there. I also want to point out my complications were just bad luck and in no way a reflection on the care I received there.

    Mary Sue

    #55692
    bubbasmomma
    Participant

    Hi Mary Sue,

    I apologize, but I missed your response. I’ve had a lot of emotions lately and have been very scatter-brained. I am going to WHC. My first appointment was August 1st. They called me on July 31st and told me to come the next day. I met with a whole team of doctors and I was impressed with all of them. I felt so much relief once leaving there because I know there are a lot of smart people looking out for me. They also explained that they meet on Wednesday evenings to discuss the cases of that day. The surgeon there was unimpressed with my SNB site. He said the incision is in the wrong place and that it’s possible it won’t close up because it’s right where I bend my leg. I should have started with experts from the beginning, but I had a plastic suregon do the SNB, so I guess he put the incision where it couldn’t be seen (thinking like a plastic surgeon). And he didn’t put in a drain, which the WHC surgeon thought was odd. He said he would fix it if I need another surgery and if I don’t, he will still fix it, but to wait to see what was in store for me. It’s been a bit of a nuisance. Right now, I am waiting for results from the PET/CT scan and a second opinion on the biopsies. I really don’t want further surgery and posted a question about this on the board. I also don’t want to Interferon, but I will listen to the professionals’ opinions before deciding. Thank you for reaching out to me. It’s comforting to have this board, as most people don’t know how serious and frightening a little mole can be.

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