Husband diagnoses with malignant melanoma and WLE is in December, is this too long to wait?

Hi Mollymolly and a very warm welcome to the melanoma group which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your husband has just been diagnosed with melanoma and I know what a scary time this will be for you both. 

It's not unusual for the WLE to be quite some time after the excision biopsy. I had my WLE about 16 weeks after the excision biopsy.

When I queried the length of time with my SCNS (skin cancer nurse specialist) she explained that the WLE was essentially a "mopping up exercise" just to make absolutely certain that no cancer cells had been left behind close to where the melanoma was removed. I didn't have a CT scan but a sentinel lymph node biopsy (SLNB) and this was done at the same time as the WLE.

If your husband wants to know what stage his melanoma is he could give his SCNS, sometimes referred to as a keyworker or Macmillan nurse, a call tomorrow and she will be able to tell him. She'll also be able to clarify what the appointment he has is for. The excision biopsy provides the stage and this will only change if anything is found on his CT. 

If you think of anything else you want to ask, just fire away!

Anne

Hi Mollymolly,

my husband has been through the same. Don't be afraid to follow up and ask questions. If you think it's going on too long get in touch with the Cancer Nurse or the secretary of the Consultant he is under or both.

Staging is important so you'll want to get the scan/s done asap. My friend who used to work as a Medical Secretary within the NHS assures me that people who ring often, get bumped up lists.

Otherwise, it is scary so ensure you are taking care of yourself and finding ways to relax and get on with your life. I am using distractions to cope with the stress.

Hope this helps.

All the best

Squeak

Thank you so much for replying. We will call tomorrow to clarify what appointment the letter is for.

I'm reading online for more information so I have questions I want to ask at the next appointment.

He mentioned that the doctor said there are 'satalites' that they want to remove and check. Reading online about satalites fills me with fear. I know we shouldn't look online but I cant stop myself. Luckily I don't think my husband is looking online.

16 weeks is such a long time you must have been literally worried sick.i feel sick constantly so I can't even begin to imagine what my husband is going through.

Hi Mollymolly 

How are you doing today? I hope your husband has managed to have a chat with his SCNS today to find out his stage and what the appointment letter is for.

No, I wasn't worried about the wait between having the melanoma removed and the WLE and SLNB as my SCNS had put my mind at rest by pointing out that the tumour had already been removed and the WLE was just 'belt and braces' to make sure no cells had been left behind.

Obviously I'd have preferred it to be much quicker but there was nothing I could do about so decided I was not going to allow the cancer to ruin my life and just tried to live in the 'now' rather than worry about something that might never happen.

I was more apprehensive about having the operations as the SLNB meant I had to have a general anaesthetic and I'd never had one before.

((hugs))  

There is no right or wrong way. Some of us feel better for having lots of info others don't want it or don't want it yet. I like to know as much as possible upfront (like you so I can make a list of questions), my husband tends to wait until each stage lurks but is very thorough with his research.

I have found the Macmillan info very useful. The melanomafocus.uk website and melanoma.org.uk also good sources of information.

I am feeling a lot better now we are at treatment decision stage. Not easy decisions but we are moving forward and the hospital he's been referred to for oncology seem to be much more on the ball than our local hospital.

When I feel sick I know I am generally suppressing my emotions and my diaphragm is getting tight, so I go for long walks, write and/or do some deep long breaths out which helps. Of course it comes back again, over and over. I try to feel into what emotion wants to come up. Sometimes I put on some loud music and cry or bawl. The car is a good place for this but not when you're driving obviously. Last weekend I actually went over to my mum's and cried in her arms which releasesd a lot of fear. Haven't done that for decades! But you just have to do whatever works. I hope you have some good support around you. 

Take care

HI Latchbrook, we didn't call yesterday.  He was satisfied that the December appointment is for another check up.  When I asked him if he was told about what stage it was he said he doesn't think it is like that.  I have been reading online and my understanding is that once diagnosed there are stages 0 to 4 but I didn't say any of that as I don't think he is ready.  We will find out what is what after the CT scan and the WLE.  We are expecting that he will get a letter this week for the CT and the WLE.  It is such a long time to wait.  Thank you so much for checking in, I really do appreciate it.

Hi Squeak, thanks so much for checking in.  I think he would rather wait and see, and I like to have all the facts up front.  I am trying to not look at any more info online as I just tie myself in knots.

He doesn't want anyone to know right now as he is scared it gets back to the kids and he doesn't want them to worry.  We will speak to them once we get the CT scan results, regardless of what they are.  I have confided in a close friend, so might arrange a walk with her at the weekend.

The waiting is so long.

Hi Mollymolly 

You are right that melanoma has 5 stages from stage 0 through to stage 4 and his consultant, and SCNS, will know what stage your husband's melanoma is. However, you could be right that he doesn't want to know his staging yet. 

Anne

You're so welcome. My husband is the same wanting to keep it from as many people as possible. Our children know now but people change when they know what's going on and start to treat you differently so I understand. I don't deal well with the waiting though.

Enjoy your walk. It's always good to have someone you trust to talk to.

Take care

Hi Mollymolly, my biopsy was in October last year and the WLE and Sentinel lymph node biopsy was carried out in February this year and this seems to be a normal time frame. I was diagnosed Stage 1b and this was determined by the biopsy. Both the WLE and sentinel node tests came back clear (thank God). I think we all feel differently about when we are ready for family and friends to know. When my husband was diagnosed with bowel cancer he was quite open about it, when I was diagnosed with melanoma I didn’t want to tell anyone at first. I think it’s about however you process it. 

I didn’t get a cancer nurse until after my results but was advised by the consultant NOT to google and it was the best advice I was given. Stick to the reputable sites such as this one and the staff immediately involved in your care.