waiting on actual diagnosis

Hi everyone

This is my first post on here, came across it while googling.

So here is my story so far.

Last July (2020) i went ot my gp with a small lump under the skin on my upper arm, i had had this lump for a week or two so i knew it wasnt a basic spot under the skin as not clearing, the gp advised me its all ok and should dissapear. By December 2020 this was now a growth on the outside of my arm like a blister, which started to get painful, after the xmas break i contacted the surgery and spoke to a doctor who then refered me to the dermatrologist dep who i had an appointment with in less than 2 weeks. At the appointment the doctor examined the growth and said it was a basal cell carsinoma BCC (sorry for the bad spelling) he wanted the growth removed there and then and was sending it away for the normal testing.

Two weeks after the dermatrologist phoned to say it was a strange one and was sending it to a sarcoma MDT fot a second opinion. Weeks have now gone on and on no contact so i phoned my gp surgery to say that they had been informed that the growth removed could be a amalunotic melanoma or possibly a spindal cell tumor, and i was been refered for a ct scan. There are also braf tests been carried out on my removed tissue,

I had the ct scan last week, so i guess now is a waiting game to see when i hear back. 

We are now 7 weeks almost 8 weeks from the first appointment with the hospital and having it removed and i still dont know if it is deffinetley cancer or what type of cancer. Its really heartbreaking. 

I just feel i have not been kept informed what so ever which makes this full process so much harder i am 31 and have two young chldren under 3 years old. I know we are in a pandemic but surly there should be more information and contact through this process.

Has anyone else experiennced anything similar?

Thanks

  • Hi,

    I'm sorry you are going through this awful long wait for an answer. Sadly, there are times when histology find it hard to tell what type of cells are in the tissue - whether they are benign or cancer & if cancer, what type. They sometimes have to get a second opinion & in your case, they need to definitely know whether it's melanoma or another type of cancer because the treatments are different. The BRAF tests are done in case it's melanoma so it sounds like they are covering all bases.

    The wait since your first appointment & removal will have very little effect on the chance of spread etc. The good thing to focus on is that it's gone now & they can decide upon the next step of treatment once they know exactly what type of cancer they are dealing with. 

    Pre-Covid, if second opinions were needed etc, the delay would be the same & they don't always keep the patient informed. Sadly we patients end up having to do all the chasing so don't be afraid to ring the consultant's receptionist if you feel you should have heard something by now. Usually the consultant would see you a week or two after the scan but they may still be waiting to hear from other's involved ie. histology. I would ring them at the end of this week if you haven't heard anything.

    Good luck and please let us know how you get on,

    Angie (melanoma patient)