Testicular cancer

Affected by testicular cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

still waiting

Shelly74
Posted by

well I've just been to our gp as we haven't heard anything from the hospital,  and hes told us that it was a mixed germ cell tumour,  his ct scan has shown an enlarged lymph node behind a major blood vessel in his back towards his kidney and his bloods are slightly outside normal range,  I'm so scared hearing all this as we haven't seen anyone to explain it in more detail, is it normal to keep you hanging around for weeks after the OP ect.     

shell

Spirited
Posted by

Hi Shelley,

Yes it takes a while after the op to speak to your oncology team. I think we saw someone about 6-7 weeks after the op although it can be as short as 4 weeks. 

I was worried but a GP friend reassured me that if chemo was needed ( which it was for my husband who also had mixed germ cell which spread to a lung. He had 4 cycles of EP and was given good scan results in June) then ideally they like to give you time to recover from the op before the next treatment if any required. 

Also as I understand it, a multi disciplinary team meets to decide what the best course of treatment is for each patient. So everything will be in hand and they take great care to give their all to each patient.

We got a letter from the hospital about two weeks before the appointment. 

Hope the orchiectomy recovery going okay and if you don’t hear anything in the next couple of weeks I would suggest keep ringing to chase. 

Take care. 

Shelly74
Posted by

hi spirited

thanks for replying, hes still a bit sore since his op and all the stitches haven't dissolved yet,  I've spoken to one of the nurses and were due to see the consultant next week after he's been to Manchester for sperm banking.

Odbball
Posted by

Hi Shelley,

My ct scan results and tumour type were very similar to the news you have just received.

I took a stage 2 diagnosis as “good news”, as had convinced myself I was riddled with it, in my lungs, my brain, organs, everywhere.  So to be told I “only”  had 1 enlarged lymph node was great news.

Obviously we all hope for a stage 1 diagnosis.

As Spirited states, how long results take to get depends on the multi-disciplinary panels cycle, which often meet once a month.  Catch it wrong and they may not review your case for over 4 weeks, catch it right and it might be 1 week.

It looks like chemo, 3 rounds of BEP I expect, will take 10 weeks, so should be finished by start of October, hair back for Xmas!  It will drag on, but also be done with before you know it.

take care

dan

Shelly74
Posted by

hi Dan 

thanks for replying,  does an enlarged lymph node mean its spread, my head is spinning and cant take much info in at the minute, I've also read that BEP can make you really poorly is this also right? I've never been so scared in my life so god knows how my son must feel, im so glad that your on this group for your knowledge and support. 

take care 

shell 

Odbball
Posted by

Hi shell,

TC spreads through the lymphatic system, so the first signs of spread are the lymph nodes, I think first in the para aortic node, which I think you are describing.

I try to be a glass is half full type of person, so would suggest the treatment makes us all much better!  It does have side effects, but all are “manageable”.

I watched a lot of box sets, and crap tv, homes under the hammer a particular favourite!

You obviously need to speak to the consultant, as  I’m an accountant not an oncologist.

But remember, it’s still always TC, and the most curable.

“Do You know the most curable cancer? TC.  Do you know the second most curable cancer? Relapsed TC” Dr Einhorn The eminent TC doctor.

Take care 

Dan

Mrs Taff
Posted by

Hello shell, our son is 34yrs old and had his orcidectomy last October in for testicular cancer. His first surveillance appt was in May .His scan showed that the cancer had spread to a lymph node in his lower back. A referral to the Royal Marsden hospital followed. He is having his operation to remove the lymph node next Saturday, followed by one cycle of carboplatin chemo at the beginning of September. It's taken 12 weeks to get to this stage.we had to wait for hospitals to talk to each other. It feels as if nothing is happening, but they are busy making plans for you. Xx

Shelly74
Posted by

hi mrs.taff 

thanks for replying,  we have an appointment this Wednesday to discuss ct, blood and tumour results,  even though we already know about the enlarged lymph node, hope all goes well with your sons operation x