Newly Diagnosed ...timescale expectations

Hi I’m all new to this but my journey started the end of July with a gp appointment 2 weeks later I was having photographs taken by the dermatology department and 4 weeks later had my mole removed for biopsy, I got my results 6 weeks later, it was a stage 1a melanoma borderline 1b, the initial biopsy has shown clear margins and I’m seeing the plastic surgeon this afternoon to discuss my WLE I have been offered a SNB as an optional test which I’m not going to lie has scared me a little, I was pretty calm until I had the appointment letter to discuss the results. It’s been a relatively quick journey for me although it has felt like forever! I’ve tried hard not to Google things but sometimes it’s difficult not too, my nurse told me not to Google but look at the macmillan site as it’s the most up to date regarding treatment ect. I hope this makes sense as my head is still a little all over the place digesting the information  and answers your questions a little. I am now going to forever be that annoying person who tells everyone to put on sun cream. X

Hi Lills

Thank you so much.

I am sure everyone struggles with the mental aspect of waiting for tests and results etc. 

We have now recieved an appointment for yhe mri scan on Monday so I am relieved that progress is continuing. 

I am concerned that there will be a stall before physically intervening and although the prospect of radical surgery is terrifying if it needs to be done you want to start.

My husband has purposely kept away from google and researching prognosis staging etc but I feel I need to understand to feel prepared and to ask the correct questions.

Wishing you all the best in your treatment

Joanne

To update the Pet scan showed cancer cells in the neck lymph nodes only. My husband is now sceduled next week for his pre op and then WLE and neck dissection. Is there anyone on the forum whocan advise on recovery post surgery for neck dissection and what to expect in terms of pain relief required healing and limitations post op.

We think he will probably be offered immunotherapy but taking each step as they come. Trying not to get overwhelmed by the enormity of it all.

Thank you to anyone who has the time to offer advice or describe their own experience particularly of neck dissection.

Hi Joanne, so sorry to hear about your husband wishing him a speedy recovery. 
I had a neck dissection at the beginning of Sep-22, I also had keystone surgery on my shin after a WLE and skin graft on my scalp so my recovery might be a little longer but hope this helps. 
I was in hospital for 4 nights following the surgery, I had two drains in my neck which were removed on day 2. I was on oramorph and diclofenac whilst in hospital but they did make me really nauseous, but no pain! Following release from hospital I was discharged with diclofenac and codeine but the pain was really bad and I couldn’t sleep for around 4/5 days. After that I started to recover really fast. I still have weakness in my shoulder (6 weeks on) but can do most things now. Struggle to lift anything heavy and still have pain but it’s amazing how fast it’s healed and I’ve started to massage the scar and it’s disappearing before my eyes. 

Thank you so much for replying. My husband had the WLE and neck dissection on Friday and was discharged still with one of the two drains in place on Sunday. We were hoping he would sleep better away from the hospital noises etc but at home he still feels uncomfortable because of the drain.

He has lack of feeling in his ear lobe and ? A bit of tinitus and minor lower lip paralysis. 

The wounds are less severe than i had anticipated and i hope will eventually fade.

He is concerned with the neck stiffness and limited ability to tilt his head. Again as you have indicated I am hopefull that this will improve as the swelling reduces.

What a terrible rollercoaster this is. It isnt a matter of removal of the cancer. These melanomas seem to pop up again and you start again the next round of the battle.

We are told that the next thing will be adjuct therapy and all that involves and the worry and fear of what appears on the next scans.

The mental effects are as debilitating as the physical.

It is so nice to hear others reflect such a positive mindset. Thank you

Hi

I had a radical neck dissection back in July 2021, where 48 lymph nodes were removed.  (I wasn't allowed to be discharged until the drainage rate had dropped below a certain level and the drains had been removed).

I think this has to be viewed as a long-term recovery process.  The initial post-operative pain faded within a couple of weeks, however I still have some stiffness in my neck which I resolve by use of the exercises that the physiotherapists advised before I left the hospital.  I can't stress enough the benefit of following these exercises!

I still have numbness around my neck, ear, and shoulder, but it's gradually getting better, as is my lower lip which lost some of its movement during the operation.

It sounds as if my op was more extensive, so I suspect the recovery timescales are longer, however as long as your husband realises that things will improve and not to rush things!  If his op was only last Friday, I think he's doing really well, and should not expect to be pain-free after a major op a few days ago!

All the best.

JoCor, it sounds like your husband has been seen quickly through these initial processes.  Time to heal is important too, good nutrition and hydration and exercise.  I'm sure he will be offered adjuvant therapy as per the NICE guidelines.

Docs will test the lymph node sample for Braf status and that will determine medication choices. I am Braf negative so my only first option was Pembro.  Braf positive patients can initially have one of two options with the other held back in case of non response or recurrence.  I had minimal side effects, some tiredness, hand joint pain and constipation.   I finished my year of three weekly Pembro doses(200mg each time) in August.  I'm now on the regular scan treadmill trying not to just sit and wait for it to return.  There's so much to take in at once and one of the best bits of advice that's given on here is usually to take one day at a time and avoid Google, try not to anticipate everything that's going to happen and just stay in the present moment. The fear and worry won't vanish for sure but keeping ourselves busy can help.

I agree with you that this disease causes mental and physical pain but we are here to be as open as we can.  It might well be worth you joining the Carers forum too as there will be others in exactly your position and you need lots of support too hon xx

Thank you allotment lover. I will certainly join the other forum too. 

Today the second drain was removed and his posture has already improved through not carrying the drain bottle around. 

My husband has always been health concious. Loves being busy and life in general. He is beating himself up about the amount of unprotected time he has spent enjoying being outside in the sun. But feelings of guilt and regret are self defeating and not helpful. I am hoping that even with the adjunct therapy side effects and the worry associated with fear of reoccurence and anxiety every time there is a checkup we can develop a new normal.

Thank you to emo bham and yourself for replying and offering your experience and knowledge.

Welcome to that new phrase- the new normal.  I'd never met it before but on here it makes sense. We are never the same again and nor are our loved ones who've walked by our side every step of the journey.  Tell your husband from me to forgive himself and let go the guilt, no need to waste energy on that but to feel it is part of the grieving we do naturally when cancer raises it's ugly head. For extra reassurance I can say that although I've been bumped back to the dermatology team my recent first set of 6 monthly scans were still looked at by my oncologist and acted on immediately with an emergency CT appointment!

I'm told that in time we fill the gaps back up with things we love to do and don't fear every lymph, bump or twinge - hope so!  Take care both of you xx