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New to Melanoma and the Group

New to Melanoma and the Group

Posted By
regwash
4/23/2019 8:27pm
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Replies: 19

Hi all, my name is Regina and I’m new to all this. I’m 30, married with 2 daughters ages 6 and 3 months. Just wanted to share my story and ask a question or 2. 

So I had a “weird looking” mole on my right shoulder blade/top of my back for maybe 6 months, maybe longer than that. I’m not sure exactly how long it was there. I gave birth to my second daughter in January and I know I had it WHILE I was pregnant with her, just not sure if it showed up before or during pregnancy. My husband had made comments about it looking odd and I knew it was there, just never felt an urgency to get it checked out. 

Sunday March 24 of this year, we had just finished a 3 week long fast with our church and I felt an overwhelming nagging that I needed to get this mole checked out ASAP. So I told my husband I was going to make an appointment with a dermatologist he had seen. I called the next day, Monday and I had an appointment that Thursday, March 28. 

I told the dermatologist I wanted a full skin check because I have a lot of freckles and moles all over and I had one or two I was concerned about. Showed her one on my chest that looked odd to me and she said it was normal and then told her I was worried about the one on my back and she said, “Yes that mole is worrying to me too.” She did a biopsy and took the whole thing, and told me she would call me with the results on Wednesday. 

She called me with the results on Wednesday April 3 and confirmed that the mole was a melanoma. She told me she was referring me to a surgical oncologist, who would do a wide local excision and decide whether or not to do a sentinel lymph node biopsy. My appointment with the surgical oncologist was supposed to be Tuesday April 9. They called me the day before and said they had to reschedule for the following Tuesday. This made me extremely upset and I asked the question, “isn’t this kind of a time sensitive situation? Shouldn’t we not wait on this kind of thing?” The surgeon’s office assured me she had seen my pathology report and determined it was okay to wait a week for the consultation. I had also called the dermatologist to get her opinion on the matter - she also assured me it was okay to wait a week. 

I had my consultation with the surgical oncologist last Tuesday, April 16. I found out the details of my melanoma - malignant, stage 1b, superficial spreading, 0.92 mm Breslow thickness, Clark’s 2, mitoses less than 1, no ulceration. 

My sentinel lymph node biopsy and wide local excision is scheduled for next Monday, April 29. I think I’m more nervous to find out whether or not this has spread to my lymph nodes than anything else. I’m a little nervous about going under anesthesia. 

if you’ve read this far, thanks for reading my novel. I think my only question so far is, with my thickness of 0.92, is there a high chance it may have spread to my lymph nodes? The surgical oncologist said the biopsy is not normally done for a stage 1, but because the thickness puts me right on the cusp, “better safe than sorry” I guess. 

again, thanks for reading. Looking forward to the support I can receive here. If you feel led to share, please tell me how I can pray for you specifically (besides the obvious, complete healing of this disease). ❤️-R

Sorry you are here, R.  However, it seems as though you are getting appropriate care and advice.  SLNB and the wide excision are appropriate given your condition.  The surgical oncologist has provided an accurate answer as well.  Here is an article that reveiwed patients with thin melanoma lesions and when SLNB is appropriate:

Sentinel Lymph Node Biopsy and Management of Regional Lymph Nodes in Melanoma: American Society of Clinical Oncology and Society of Surgical Oncology Clinical Practice Guideline Update. Wong, Fariers, Kennedy, Agarawala, et al. Ann Surg Oncol, 2017 Dec 13.

To update the American Society of Clinical Oncology (ASCO)-Society of Surgical Oncology (SSO) guideline for sentinel lymph node (SLN) biopsy in melanoma.  An ASCO-SSO panel was formed, and a systematic review of the literature was conducted regarding SLN biopsy and completion lymph node dissection (CLND) after a positive sentinel node in patients with melanoma.

[Where they note....]  Routine SLN biopsy is not recommended for patients with thin melanomas that are T1a (non-ulcerated lesions less than 0.8 mm in Breslow thickness). SLN biopsy may be considered for thin melanomas that are T1b (0.8 to 1.0 mm Breslow thickness or less than 0.8 mm Breslow thickness with ulceration) after a thorough discussion with the patient of the potential benefits and risk of harms associated with the procedure.

So...there you go.  The odds of a positive node for your condition is unlikely.  However, melanoma doesn't play well with others and sucks great big green stinky hairy wizard balls!  Getting the SLNB done will let you know what is going on for sure.  Should you have a positive node there are proven effective, FDA approved, adjuvant treatments now available for Stage III melanoma patients....just so you know!!!  But, hopefully you will not require those measures.

I wish you my best.  Celeste

 

Thank you Celeste! Thanks for the article and thanks for the encouragement. Just read through a few of your blog entries. You are quite the warrior and your sewing is very impressive! ❤️

When I was diagnosed 3B in February I was like you. I wanted to move fast.  I was offered a clinical trial and the oncologist assured me I had time to thoughtfully consider it and get a second opinion.  She told me one of the regrets she hears from patients under treatment is they rushed into it.  I delayed my decision 2 weeks. 

I did the clinical trial BTW and my big lymph node isn’t big anymore.  I have surgery May 6.  

I am sending prayers and positive vibes to you. 

Lucy

Lucy

Thank you for the reassurance on time! If you don’t mind me asking, did you start out as stage 3b straight from the beginning or were you an earlier stage during only office visits and then discovered you were a higher stage during surgery and biopsy? I’ve been trying to find out how often people start out as an early stage but are actually higher than originally thought.

I’m caught between wanting to know everything and wanting to be banned from Google forever. 

Gene_S - (4/24/2019 - 1:47pm)

I would stay google is a bad place to go as all the things they have on their site are outdated.  It has just been around the 10 years that all the news meds have come out for treating melanoma.

My husband started out at stage III  with a 10.5 mm lesion on the back of his head and he became Stage IV with an unresectabel lesion at the C1-C2 cervical spine and lesions in his lungs and liver in Oct. 2010 and began a clinical trial on Mar. 2011.  He became NED in July 2012 and has remained that ever since.

If you want you can read more about his journey on his profile page.

I would also say get copies of all scans, biopsies and reports and keep a file for yourself then it is easier if you have to go see another doctor because you have copies of everything.  Always see a melanoma specialist as well.

Judy loving wife of Gene (Stage !V and NED for over 6 and 1/2 years)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Thank you for the encouragement Judy! What a blessing for your husband to be doing so well. Your story has given me more hope. Praying God continues to bless you and your husband. 

Gene_S - (4/25/2019 - 9:59am)

Thank you and I am praying he blesses you as well.  My husbands journey started in 2008.

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

ourvan - (4/25/2019 - 10:52am)

Hi Regina - welcome to this group of supportive friends, but sorry you have to be here.  In terms of being worried about delays, I know the panic that one feels when diagnosed.  I can share that I was also extremely concerned about timliness of treatment because the mole I had that turned out to be melanoma had been dismissed by two dermatologists over about a 5 year period.  A third said, "if it bothers you it bothers me" and removed it, only to have it come back as melanoma.  In fairness to the other derms, my mole was not one that had the typical characteristics to look worrisome, and even the 3rd didn't think it was anything to be concerned with when she looked at it.  I tell you that background only to say that I was, of course, fearing the worst - that this had been left unchecked for a long time and now I was in real trouble.   It was a long month from my diagnosis in February of 2018 to my excision/SNLB six weeks later, but my surgeon tried to put my mind at ease about the delay just as your doctors are.  (I wanted it gone NOW)   Good news was that there was no sign of cells in the lymph nodes, even after that period of time.  I was Breslow depth 1.2mm, Clark level IV, mitotic rate 1, stage 1B.   Hoping for the very best outcome - this forum is a safe place to land when you're feeling worried or stressed.

regwash - (4/25/2019 - 12:03pm)

Thank you for the encouragement! All the stories I’ve read here so far including yours have me feeling even more hopeful. 

 

Hello Regina, 

I am sorry you have to go through this, but I am also glad that you are taking a very good care of your self, receiving proper medical attention and also that you cought melanoma at early stage. I hope more and more people get to the same. 

I am care giver and my was diagnosed at stage IV, about a year ago. Being in charge of all her appointments, medicine, and insurance I was going crazy about each minute of delay. 

I was blessed to have an extended conversation with a cancer survivor and she noticed my anxiety. She kindly made me see it in a different perspective. 

She said the only nice thing about cancer that we have time to think it through, and make all the right moves. 

You have time my dear, just breathe :) 

It is important to keep things moving in a timely manner, but days of delay in cancer, even in melanoma will not make or break it. 

Bottom line, you are doing great, at the right speed, keep going and breathe often :) 

Love, 

S. 

 

Thank you so very much for the encouraging words! 

I just had one removed from my left upper back between shoulder blade and the middle back area that was .9 mm. Like you I’m not sure how long it had been there either.  I just had my WLE and SLN biopsy this past Tuesday. I go back on the 6th for follow up and hopefully clear results.    They took 3 sentinel Lymp nodes to test from my left Auxiliary.  (arm pit).   My initial biopsy was the 28th February with the dermatologist, who then referred me to an medical oncologist who then referred me to the surgical oncologist.    Wishing you the best.  I’m 53 yo.

Sounds a lot like my timeline and location. Praying for clear results for you! Please update me when you find out. 

I sure will. 

All my Labs came back negative I just have to stay on top of it and keep close watch.  

R - I too a new to Melanoma. Unlike most cases, I don't have a primary site. I had a "knot" removed from the back of my head. The dermo and surgeon thought it was a normal "lypoma". They sent to pathology for biopsy. Ends up that the tumor removed had a lymph node present and melanoma. That automatically puts me at Stage 3B. After the scanxiety waits from MRI, CT and PET - I did get an "all clear". All of the above was March 2019 and April 26th I started my first KeyTruda treatment. Here is a great video on immunotherapy from MD Anderson, https://www.youtube.com/watch?v=CwaMZCu4kpI - or google search immunotherapy md anderson on youtube and you will find it. 2 days after my first treatment - no side effects. I am lucky to have a very supportive wife, 2 boys 19 and 23 and a great office team - all cheering me on and praying hard. You likely have gone through all of the worry, crazy thoughts and prayer. My advice, stay positive, treatment options have come a very very long way (if you even have to go there). I can tell you I feel the power of prayer has helped me. I set up a site on Caring Bridge and am sharing my journey with framily (friends and family) with pic's and journaling with humor and positive thougths. So far so good.... 

Good luck to you - I am praying for positive results for you from your surgery tomorrow. 

Yes I agree - prayer has helped me a ton. Thank you for your prayers and I am praying for you as well! Sounds like God really has His hand on you. Praying you continue to have no side effects and your treatment does all it is intended to do. 

Thanks everyone for all the encouraging stories, thoughts, and prayers. Just had my WLE and SLNB today. Sentinel lymph node was in the right arm pit, which makes sense since primary was on my upper right back. Surgeon said everything went perfectly. Everyone at the hospital was amazing. Feeling a little sore and can’t lift my right arm very much at all but other than that, I’m okay.

Now just praying for clear margins and a clear lymph node! Thanks again everyone :)

Glad to here all went well. My left under arm is still a little tender, my procedure was on the 23, but every day is a little better.  Prayers and best wishes to you.