Post operation

Mohem 1 month ago

5 replies
36 subscribers
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Hi all. I was diagnosed with a form of skin cancer l, merkel cell carcinoma on my forearm in September had ultrasound ct pet scans and a lymph node biopsy. Consultant was sure it came from another source but not found which was a relief. Had the lump removed and 2 lymph nodes removed a couple of weeks ago. Recovery well but slowly. Any one else been diagnosed with this rare but aggressive cancer?

latchbrook 1 month ago

Hi Mohem and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you have recently been diagnosed with Merkel cell carcinoma but it's good to hear that you're recovering from your recent surgery.

As the online community is divided into different support groups I'm going to recommend that you join the skin cancer group where you will find a few others with this type of cancer.

To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

It would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Wilbert 1 month ago

Yes my husband was diagnosed in March He has surgery to remove the tumor from his scalp He began immunotherapy in July drug is called Avelumab and has had minimal side effects It has in the words of his Dr resolved the disease in his lymph glands The infusions are 2 weekly and take around an hour and a half We are given to understand treatment will carry on for a couple of years However as it's worked so well we have been given a treatment holiday in order to have a holiday over Christmas and New year There are other people on the site with Merkel cell You will find them if you enter Merkel cell or Avelumab in the search box Free feel to ask questions it's good to share experiences Best wishes Wilbert

Mohem 1 month ago in reply to Wilbert

Thank you Wilbert

I’m glad your husband as been getting the treatment that’s required. Yes I’ve checked out the information about Merkel cell carcinoma which was helpful. Have a lovely holiday and I’ll keep you informed

Wilbert 1 month ago in reply to Mohem

That's good to hear Yes keep me informed Celia

TMO 1 month ago

Hi Mohem

I was diagnosed in August 2022 with metastasis Merkel Cell Carcinoma (MCC) My primary site was on my thigh but was misdiagnosed as " nothing to worry about". It wasn't until my inguinal lymph nodes became enlarged and were biopsied that I was diagnosed with stage 3 MCC. I had a groin dissection to remove lymph nodes and was told they had got it all and there was no need to follow it up with radiotherapy, which is the recommend follow up treatment after surgery for this cancer. I've had 2 more reoccurrences and more pelvic surgery. My surgeon has now told me that I'm not able to have the follow up radiotherapy as the cancer has spread to deep internal lymph nodes.

It is important that you have a consultant that is familiar with MCC as this is not like any other skin cancer. It's aggressive and can grow at an alarming rate and will metastases very quickly. You have not mentioned that you are going to have radiotherapy following your surgery. I would push for this as radiotherapy will kill of any remaining tumour cells that may have been missed and are not yet big enough to show up on a scan.

There is a great website with loads of up to date information on MCC

Merkelcell.org

It is an American site so some of the treatments and monitoring is not available in the UK but I would still recommend you take a look at it.

In hope everything goes well for you

Tina