- July 12, 2019 at 4:38 pm
My husband was diagnosed with desmoplastic melanoma 3 weeks and 2 days ago. He is 55 years old, and we have 3 children.
It began with a small non-pigmented bump on his neck right below his ear. We were informed 2 days ago that his PET CT/scan results were clear: no cancer in his lungs, liver, or bones. Next Tuesday (July 16th) he will have an FNA biopsy (fine needle aspiration) on his lymph nodes as the scan cannot detect cancer spread in that area. The following Tuesday (July 23rd), he is scheduled to have the following procedures all at the same time: a SLNB (Sentinel lymph node biopsy), tumour removal in his parotid gland (parotidectomy), and a CLND (complete lymph node dissection). The consultant wants to perform the CLND regardless of whether the SLN is positive for the cancer or not.
I am very scared about the CLND as I believe the lymph nodes are there for a reason. Upon asking the consultant whether the CLND was necessary, he responded that that is what he would do if it were his father. I appreciate the fact that his answer was personal, and he seems to be a very nice and competent surgeon, but I am still very much concerned whether the CLND may compromise my husband’s treatment after surgery or whether it is beneficial at all. Upon asking the doctor about several immunotherapy drugs, he said he couldn’t answer me as he was not the oncologist or specialist in that area and that that discussion would come after the surgery.
I am determined to learn much more about melanoma in order to be of some help and support, but given that the CLND is scheduled for a week and a half from now, I am very humbly asking for any advise or thoughts on my husband having a complete lymph node dissection under the present conditions.
Thank you for your much needed help and support.
An affected wife
I’m confused. Does he have a tumor in his parotid gland or not?
- July 12, 2019 at 5:05 pm
I had a tumor in my parotid gland that lit up like Christmas lights on my PET Scan. The tumor was a lymph node with extra-nodal extensions. I had everything from above done except the sentinel node biopsy which is somewhat pointless if its already known to be in the lymph nodes. I had a modified radical neck dissection along with the removal of the rest of my salivary glands on that side to go along with the parotidectomy. I asked the same question and was told the area of the surgery is highly sensitive to additional surgeries (nerve damage) and most surgeons refuse to go in a second time due to the build up of scar tissue and what not. In the end I had a couple more lymph nodes in that “drainage that came back positive with micro amounts of melanoma that couldn’t be seen from other procedures. I’m 35 and have had little consequences from the dissection.
- July 23, 2019 at 12:55 am
My husband is finally having his parotidectomy, SLNB, and CLND in about 8 hours. Given that your melanoma treatment was very similar to what my husband is having, could you tell me how many days/weeks after surgery did you wait before beginning radiotherapy? Did the radiotherapy have any specific name? I just want to prepare as much as possible given that we have been warned that the operation can take quite a bit out of the patient. Thank you.
- July 12, 2019 at 6:45 pm
You are a God-sent to me. For the first time since I learnt that my husband has desmoplastic melanoma, am I able to relax a bit. Like yourself, my husband has the tumor in his parotid gland; and hopefully, like yourself, he will have little consequences from the dissection. Again, thank you so very much for sharing. You’ve made me realise I am not praying for the impossible. Thank you. Best wishes.
- July 12, 2019 at 5:08 pm
I was shocked when I saw this message. I don’t post a lot, but wanted to answer right away. There are many on this board much more up on these things than I but from what you described I don’t really understand why a CLND would be recommended. There hasn’t even been any sign of lymph node involvement and docs are really shying away from CLNDs unless there is significant lymph node involvement. What is the reasoning behind doing a CLND? I would definitely seek a melanoma specialist on this one! Hope this helps and I hope some of our other more knowledgeable peeps on this site chime in!
you so very much for your response, especially for your question in regard to the reasoning behind doing a CLPD. It made me go back to my notes. There is so much information I am trying to absorb.
- July 12, 2019 at 6:00 pm
The reasoning behind doing a CLPD is that in a CT scan (conducted right after the first biopsy and before the PET CT/scan which I forgot to mention above and for which I apologize), there was evidence of lymph node involvement.. The consultant said it could be due to just infection, and not cancer spread, but couldn’t confirm. That is the reason that they will be doing the FNA biopsy next week.
My worry is over the consultant wanting to conduct the CLPD regardless of whether the biopsy is negative or positive. His reasoning is that he doesn’t want to take the risk of some melanoma cells being left behind in some other lymph node.
Again thanks very much for taking time to help me. Best wishes.
This video is from ASCO 2019 with a top group of melanoma specialist talking about various issue in melanoma. Around the 2 min mark they talk about MSLT-2 trial and information gained from this study. There are three other videos released so far and all deal with early treatment and best practices. Take Care!!!Ed https://www.onclive.com/peer-exchange/malignant-melanoma-management/management-of-stage-iii-melanoma
- July 12, 2019 at 5:30 pm
Here is some more information about MSLT-2 study and what it found and how it has changed how surgeons treat melanoma patients. https://www.ascopost.com/issues/may-10-2018/fundamental-clinical-questions-on-sentinel-lymph-node-biopsy-in-melanoma/ https://www.nejm.org/doi/full/10.1056/NEJMoa1613210
- July 12, 2019 at 5:36 pm
EdwinParticipantYou should discuss the proposed CLND with an oncologist. I had a SLNB and CLND to my neck in August 2014. That was before it became know that CLNDs in general do not extend survival time of people with stage 4 melanoma. My SLNB found melanoma in one lymph node. So, the CLND removed 14 more lymph nodes; melanoma was not found in any of them. I wish I had not had the CLND. That area is still sometimes a little sore. In April 2018 a surgeon did not want to remove a melanoma tumor near the CLND region; the CLND damage would make the new surgery more difficult. In his opinion surgery would not extend my life. He referred me to a radiation oncologist.
- July 12, 2019 at 6:05 pm
Hi affected wife. I am so sorry that you and your husband are dealing with all this. However, please please stop, drop and RUN to a facility that has melanoma specialists before you take any other steps. I know it seems like you are in the middle of a life and death emergency and in some ways you are. However, you have time to gain the opinion and care of someone well versed in melanoma treatment. Your doc sounds caring, but if he/she can’t answer questions about melanoma care NOW, then they are not the doc to be advising what to do at this point!!! Much has changed in the care and treatment of melanoma in the past 7-8 years. Not all oncologists have kept up with it. That’s okay – but you need one who has!!!
- July 12, 2019 at 7:03 pm
First – CLND was once routine. It is no longer!!! And this is coming from a chick who has had it done TWICE!! But, that was back in 2003 and 2007! With the treatments we have now and all that we have learned since then, I would NOT have one today. But, don’t take my word for it. Here is a link to a report with links to additional ones within so you can see the study results for yourself:
Secondly, here is a report on current basic melanoma care I put together that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
To further complicate matters – there is something called adjuvant care where melanoma patients who do have melanoma in a lymph node that has been removed may be given treatment for a year or so to do away with any melanoma bits and bobs that are floating around. The results from doing that are very good. Additionally, there is something even newer – NEO-adjuvant care in which melanoma patients with melanoma to a lymph node or other localized area actually take medicine for a bit BEFORE surgical excision and THEN have surgery followed by adjuvant treatment. I don’t know that this is something your husband would want or need but it certainly deserves a conversation and without KNOWING if he even has a node that is positive for melanoma there is much that cannot yet be decided in my opinion.
Finally, you are doing all the right things. Learning and asking questions. This forum is filled with lots of knowledgeable, caring peeps. Please seek the care of an oncologist who is well versed in melanoma and cares for lots of patients who have it. There is hope!!! I am still here after being diagnosed as Stage IIIb in 2003 and advancing to Stage IV with brain and lung mets in 2010. I had my last dose of immunotherapy in June of 2013 and remain NED (No Evidence of Disease) for melanoma still. Hang tough. Melanoma sucks great big hairy stinky wizard balls, and though it may feel like it – you are not alone. If you don’t know of a facility that specializes in melanoma in your area, let us know your geographical location and I bet someone here will. Ask more questions as you have the need. Wishing you and your family my best, celeste
Hi Celeste, I apologize for not sending you my heartfelt thanks earlier for all your advise. Unfortunately I have not been too successful in carrying out your advise. My husband and I live in Ireland, and I am not sure whether my failure in doing what you suggested is doctor/hospital related or because it’s a different country to the US and things are just done differently here. Upon asking for the oncologist, I was told that we don’t meet with him until after the surgery. The WLE surgery (parotidectomy, SLN biopsy, and CLND) is being done in about 8 hours from now . The healthcare system here in Ireland is very much clogged up (underfunded), and as we are living in fear that every day that we wait for the surgery, we are running the risk of the melanoma spreading to other parts of his body, we took the decision to not push the issue of having our questions answered in case the operation was moved out to an unknown date. I have learned so much about melanoma care from the links you provided above. Thank you once again for sharing your experience. The fact that you yourself have been able to beat melanoma for so many years now despite having the CLND is giving me much needed hope at the moment. Thank you and I pray for your continued good health.
- July 23, 2019 at 12:42 am
No worries! You have been a bit busy to say the least!!! Melanoma is a crazy unpredictable beast no matter where you are and choosing the appropriate course of treatment (no matter where you are) is difficult, complicated and very, very personal. We can only make the best choices we can based on what we learn, what is tangibly available to us in that moment, and what we feel personally. I don’t think the surgery/CLND (That your husband has hopefully already successfully completed!!!!!!!) will do him “harm” beyond having to endure the surgery itself! As I told you, I have had 2 CLND’s myself. I just wanted you to know the state of the science in hopes that he simply would not have to endure any unnecessary pain and suffering. However, he should be able to proceed with any needed melanoma care regardless in the future. I wish you both my best. Celeste
- July 23, 2019 at 1:15 pm
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