Mum's melanoma - my secret burden

Posted By
BellaG
3/20/2017 6:28am
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Replies: 3

Hello there, this looks like a brilliant site.  I hope I can share my burden and get some support.

My mum is 79.  She had her original melanoma on her upper arm several years ago and had it completely removed.  Another lump appeared a few inches away, a year later, and again, all removed with no spread. 

A few weeks ago she found a "breast lump" in the upper right quadrant of her left breast.  This was diagnosed as a metastatic spread and she was sent for CT scan.  

I read some research and feared the worst.  I went to the follow-up appointment with her, and she was delighted and fully relieved to hear her major organs are all clear, the consultant told her that "there are some glands in your groin, but we will scan you again in 4 months, just to keep an eye on you, there are many reasons why your glands might be swollen". 

While she was in the treatment room having an assessment with the nurses I spoke to the consultant and expressed my surprise at how the melanoma can metastasize with no lymph/blood involvement.  He then told me that "it's very serious, but I see no benefit in your mum knowing this".  He is quite right in his assessment of my mum, she will COMPLETELY LOSE IT if she gets a poor prognosis.  She watched both parents die from cancer and is petrified of it to the point it's really ruled her life for the last 40 years.  

Her lump has now been removed and she's quite happy, but I spoke to her yesterday, and she's found a hard lump under the skin near her anus.  I reassured her, but I wonder if this is further spread now.  

I can imagine she won't be a candidate for treatments, she's BRAF negative, and even if any were available; she has other health problems and is a heavy smoker.

So, what am I asking for?  I don't really know.  Is this a typical mode of spread?   She lives several hours away, and I feel I need to be making plans for "when the time comes", but what are the timescales likely to be?  Please don't worry about cushioning the truth for me - I'm very much supported emotionally, I just feel frustrated by distance and lack of access to her consultant. 

Thank you so much for any help, Bella

Hi Bella,

The new lump your mum has found is possibly soft tissue spread and to be certain she needs her next scan brought forward. 

She is a candidate for treatment with immunotherapy but perhaps keytruda or nivilumab on their own would be a better choice as less toxic tha the combos and more easily tolerated.

Timescales- probably not the best person to ask-Melanoma seems to be more aggressive for some than others and  the disease is not yet in major organs, Prognosis differs by treatment success etc

This gives an idea http://www.cancerresearchuk.org/about-cancer/melanoma/survival . But the majority  would expect to die within 2 years of a stage 4 diagnosis.

Tretment would have a 40% chance of working and may give your mum many more years with it under control...

Is the consultant a melanoma specialist ? If not I think a ....Second opinion with a melanoma specialist is called for.... thought we were way past this dr knows best bit in terms of treatment choices for the older patients....You are in a difficult position having been given this knowledge..but there are treatments and even ifit is a case of managing her decline- a melanoma specialist should be bedt placed to help.

Sorry about the distance..always an issue whatever the condition is affecting our loved ones.

Best of luck on the journey

Deb

Hi Deb,  thank you for replying, and especially for the link is really useful.  We are in the U.K., so on the plus side she's receiving all her treatment "free"' but on the down side, it's a real fight to get new treatments through our national health service.  Very few people here have health insurance, I guess assuming our NHS will take care of us... hmm!   I think in the first instance I need to try and phone her consultant and find out exactly what his area of expertise is.... at the moment I believe he's a breast surgeon which is clearly not the best care.

Many thanks again for your help, Bella. 

Hi,

Am also in the UK. System here is that you get sent to a hospital that is the regional specialist in skin cancer. You can also request a second opinion at a centre oif excellence or a research hospital.  So if you live near London this would be the Royal Marsden, north west The Christie ,Manchester.Your GP then has to fill out a referral form... With this new lump it probably would be a straight referral under the 14 day rule..

It is quite likely that your Mums surgeon is a plastic surgeon who undertakes a variety of work from breast surgery to melanoma surgery. What shocks me the most is that he is letting you have info but not fully informing your mum. If you want to know this surgeons are of expertise then the hospital website should be helpful. Following you Mums surgery she should then be followed up by the melanoma oncology team. Has your Mum got more appointment letters ? Do you think she really knows it is serious and is scared to follow up ?  

Your problem is where to go from here. Travelling to the better melanoma centres can be exhausting... But it is where the greater experience and expertise can be found and where there is greater access to clinical trials.

Keytruda has been approved here as has IPI nivo but with restrictions for patients with numerous brain mets. Your Mum should have access to the immunotherapies or even the BRAF inhibitor drugs if her disease is Braf positive. You could also try posting on the MacMillan melanoma forums as it is more UK based. 

Best of luck

Deb