Diagnosis question

Hi, I’ve had numerous scans CT and MRI and been given a diagnosis of melanoma of the Vulvar which surgery is planned. I’ve now got to have a PET scan which is a more in depth scan to see if there is any further spread. I’m dreading the surgery especially the recovery time as I guess it’s sore and uncomfortable  have you any tips for comfort? 

Hi Nightingale 19, I found your questions interesting and although I am not a serous survivor, I have recurred at 6 months having been Stage 1 a, grade 1.  The only CT scan I have had was for restaging of the recurrence, this of which was clear.  Paper moon gave me some insight when she explained that tumors have to be a certain size to show up and that applies to PET scans.  I had my 6 month check Monday and it was a normal check process, I had no bloods taken or X ray etc.  When I recurred I had symptoms that they investigated.  I think because I am low grade they will not do other tests unless I tell them something they are not happy with.  I also reading other ladies post s get the impression that hospitals do different checks. Maybe for you when you receive your histology report speak to the Consultant about your post treatment follow up. Best wishes Dawn xx

Hi Als1955 sorry about your diagnosis.  I had a hysterectomy and I bought large cotton pants, pads, windeze tablets, paracetamol. I was given some drinks to be taken before the surgery. After surgery I followed the guide lines- rested, no lifting etc.  The surgery was ok for me, but I'm used to them as I have had 2 hip replacements, so be comfortable, manage your pain and rest. Hope it all goes well for you. Dawn xxx

Chickpic

How did they diagnose you had recurred, if I might ask? 

Hi I had a discharge, then a bleed. They booked me an appointment with the consultant and she gave me an internal. She couldn't see the lump, but she felt it and took it away with the biopsy.  The tumor was 5mm and this would not have showed up on any scan.  Papermoon made sense in that my grade cancer is slow growing so it may take time to show on scans hence found by the internal exam.  My recurrence was due to cancer cells in the body fluid that came down during the op.  (This is what has been told to me by the oncologist.)  Hope this helps xx Dawn

Hi nightingale19,

I am sure we all wonder about what the procedure for follow-ups will be.  The basic seems to be internal checks, a discussion about general health and often a gentle manual examination of the abdomen to make sure it is all nice and soft with no evidence of fluid build up.  Other tests seem to depend on individual cases or the particular routine that a consultant has.  

Up to now my consultant has carried out a chest Xray as she said cancer cells could go to the lung, and also a blood test, which in addition to the usual blood count, checks the liver and kidney function.   However this time I was told that they had carried out an audit and decided that the chest X-ray was not useful and next time I will only have the blood test..( I have had a couple of panics when certain protein levels were high and was told it could be an "obstruction" in the kidney but fortunately a repeat test was fine  - Phew)    

As you say there is a limit to what scans can identify.  CT scans increase our lifetime dose of radiation and doctors know that too many such tests add to our anxiety.    So I was told that the most important thing was to be aware of the signs and symptoms that could indicate some kind of recurrence and to report them to your team.  Do make sure your team explain as clearly as possible what you should be looking for and what changes could be significant.  As always write down any questions when you go  to your first follow-up  and it's always a help to have someone else with you at any  appointment. .

As for the time for an "all clear" I don't know whether they ever actually say that, but the chance of recurrence goes down each year and as far as I can gather 5 years seems to be the point at which it is considered really unlikely to have a recurrence.

Hi nightingale19 Check up protocols seem to vary from hospital to hospital. I had a serous type, stage 3c1 with surgery, chemo and radiotherapy. I had a scan when chemo finished to check there wasn't any residual disease (though of course if the cells are microscopic they're only likely to show up u dear the pathologists microscope) and a further ct scan about 3 months after my radiotherapy treatment finished. Both showed no evidence of disease. I had checkups every 3/4 months for the first 2 years and in June this year was "promoted" to checkups every 6 months for 3yrs. Each check up consists of a chat with the consultant or the registrars, an internal examination (a look around using a speculum and light, plus gently felling the surface if the vaginal vault )  and then feeling lymph glands in the neck, under the arms etc for any obvious swelling. My consultant told me that he counts the 5yrs from the end of treatment . He also told me that I won't be given any ct, MRI or ultrasound scans unless I present with symptoms which suggest a recurrence or with symptoms that can't be explained by other tests. He told me to be alert to possible symptoms and reassured me that I could contact my CNS at any time if I am worried - she can fit me into his clinic as a matter of urgency if she feels it's necessary. Hope that helps a little x

Hi Nightingale 19. I was discharged last year after 3 years, told it was very unlikely I'd have a recurrence now. I started with 3 monthly checks. I had a couple of CT scans because I had lung nodules but they turned out not to be cancer. Phew. I had physical exams with speculum and checking abdomen. It was really about them asking me questions. Then I moved to 6 month checks. At discharge I was told to phone if I had any worries. 

Its 4 years now and it seems like a different lifetime. I was Stage 1b Grade 2 endometroid carcinoma. Total hysterectomy and ovaries. It is lovely to be discharged.