Stage 4 new abdominal pain no scan !

Louli,

Because of the increased abdominal pain alone I would like to think that the hospital would be willing to perform a scan, regardless of your husband's PSA.

All of us are behind you!!!

Thank you Stevecam. The nurse even left the pc screen open at a page with my husbands name on it that said in huge letters, HIGH RISK, HIGH BURDEN. I thought the whole thing insensitive. We had never been told that the cancer was high burden. What does that mean? Although I can imagine. We are not stupid. I distracted my husband until the nurse realised what the screen said and quickly moved it to another page.

My darling is on Arbiterone and Prostap but although we have asked about chemo we have been told it’s only for when the Arbiterone stops controlling the PSA. None of it makes sense to me now. Others here have been offered chemotherapy why not us? We are asking to see an actual oncologist this morning. I will keep you posted.

Louli xx

Louli, I've never heard of 'high burden' before.

I know there's Low, Intermediate and High Risk.

There's bound to be someone in this forum who can relate exactly.

Be pushy, don't take "No" for an answer.

Hi Louli, I would ask the oncologist to give more detail about your specific situation but the high burden refers to the number of metastases. I hope you get some answers. Andrey

Hi Loui, High Tumour Mutational Burdon (TMB) refers to the number of cancer cells, the size of the tumour or amount of cancer in the body, It does not mean your husband is a burden. I'm not medically qualified just ask you oncologist for an answer.

All the best Ulls

• Thank you Steve, I’m going back to the hospital tomorrow for the biphosphonate infusion so we will ask about a scan in the meantime. I agree I think you do need to be relentless in your quest for the best treatment and communication, even at stage 4. 
  thank you,
• Louli 

Hi Ulls,

thank you. It’s just awful to find out that way. I hope my husband didn’t see it on the screen. I feel protective. Apart from the new pain in his side he is jogging along nicely with an undetectable PSA. I want us to stay like this for ever. I would settle for no worse for as long as possible.

I will keep you posted. 
Louli

Louli,

I knew someone would come through with an explanation, thanks to Andrey and Ulls.

This is one of the best reasons to stick with this forum.

All the best for you both, especially your husband getting the infusion today.

Be strong, Be pushy, Don't accept anything less than the Best!!!

Hi Steve,

yes it’s a wonderful place and you guys have given us great support here and I will keep going until I get some clarity. 
Thank you so much,

Louli xx

Please I could offer some help, sometimes I think things are hard for us to find the answer to, many heads are better than 1, I hope your husband stays the way he is also