Dad diagnosis

Hi HelsbelsScotland, I’m sorry to hear about your Dad and how unclear the information coming to you is. My Dad also had Parkinsons, but I am the one with the melanoma diagnosis discovered when it had already spread to many lymph nodes back in 2015. The best people to answer your questions are your Dads team, mine offer to allow a video call during consultations so that’s a possibility if you live far away like my daughters do. I have some very good Macmillan nurses at my hospital who answer questions by phone or email so I’m sure your Dad has something similar and could by giving them permission to speak to you get some answers. It may also help to use the Macmillan support line 0808 808 0000 to talk things through.

My non medical back ground has the following observations from your post. Stage 3B usually in my head means that lymph nodes are involved but it can just mean an ulcerated melanoma over 1.1mm and no lymph node involvement. I’ve put the link into staging information.

https://www.macmillan.org.uk/cancer-information-and-support/melanoma/staging-of-melanoma

You said he’s had no SLNB and his PET scan was clear so an ulcerated melanoma might be the most logical reason it’s 3B. 

I have had Pembrolizumab firstly as my melanoma was in my lymph nodes and then after becoming clear but then having a recurrence in my lymph nodes I have had it as a adjuvant or preventative treatment. A few years ago adjuvant treatment wasn’t available and people were just monitored, so as there is no lymph node involvement the consultant might be thinking it’s best to monitor and Pembro can be started if it is later discovered to be spreading. Pembro side effects vary from person to person but is considered milder in side effects than some other treatments, although this may not always be the case. My Dad was on loads of tablets due to his Parkinsons and the consultant may be wondering how these drugs might interact with Pembro. My experience is that rather than considering age they consider the fitness of the patient when I was first diagnosed I was not well at all and had to be put onto steroids before cancer treatment was considered and I was only 56. I don’t know how long your Dad has had Parkinsons and how well he is on his tablets so I’m sure the drs would have assessed that as I have a PS entry placed on my records at each attendance when I was unwell this was 2/3 and when not affected at all playing tennis and keeping fir this was 0. 

Its very common for the drs to give the final say to patients, as it’s difficult to have a crystal ball as to what might happen next and the patient will have there own attitude to risk of cancer spreading or a risk of short of long term side effects from treatment and also an attitude to quality of life which can be better when off medication in some cases. I remember how glorious it felt being off treatment for a year after having 21 months of treatment, and I was able to use that year getting fit again before an unfortunate recurrence again in my lymph nodes which I consider very unfortunate as stats suggested that not to be the norm. 

A lot of stuff for you to mull over as I know it took me some time to come up to speed with information on my own diagnosis. I hope you get to ask all the questions you need of your Dads team and if you want any person experience of others just ask away and I’m sure others as well will pitch in. I’ve never had a primary melanoma found but there will be others on here who have had an ulcerated melanoma.

KTatHome thank you, this is so kind of you to reply in such detail to all the points in my post. I will as you say continue to try to gather information! I hope you're doing OK yourself at the moment and that any treatment is going well. It would be great as you say to hear from others here who have perhaps had an ulcerated melanoma the same stage and what their approach has been to treatment.

Hi HelsbelsScotland

How are you and your dad doing and has your dad given permission for you to speak to his team so that you can better understand what's going on with his treatment?

I was diagnosed with a melanoma which was 1.4mm deep and ulcerated but my Stage is 2A. I did have a SLNB and, thankfully, no trace of melanoma was found so I remained 2A and haven't had any further treatment.

Your dad should have been offered a SLNB for his depth of melanoma but as it's optional he may have decided that he didn't want to have it.

He may be Stage 3 even if he doesn't have melanoma, or they don't know if he has melanoma, in his lymph nodes because Stage 3 is also, according to Cancer Research UK, "if it has spread to an area between the primary tumour and the nearby lymph nodes. This area is further divided into satellite or in-transit metastases. Satellite metastases are cancer cells that have spread very close to the primary tumour (within 2 cm). In-transit metastases are cancer cells that have spread further than 2 cm but before the nearest lymph node." Further information about this can be found by clicking here.

I hope you've been able to speak to his team since posting here a few days ago.

Take care

x

Thank you latchbrook - I've seen the care you give to so many posters on the melanoma forum, what a worthwhile thing to do for people, thank you. We had the good news from the results of my Dad's WLE yesterday that they were able to remove all it, however are still recommending pembro. His melanoma was BRAF positive. I haven't spoken to his team myself (I work in the NHS and reluctant to burden staff further) however have armed my parents with questions for them to ask they see the plastics (?) team tomorrow and the oncologist on 1 November, along with their own questions. So hopefully things will be clearer then but for today just thankful they were able to remove it all. Thank you again for being a community champion. 

That is good news that the WLE was clear HelsbelsScotland and I hope your parents have had a lot of their questions answered today.

I'm sure your dad's team would be happy to answer your questions if he gives permission. We're all guilty of feeling that we don't want to be a nuisance but I'm sure, as someone who works in the NHS yourself, you'd want to be able to help others if you could and you wouldn't feel they were being a burden.

Thanks for the nice compliments, it really means a lot.