Thank you,  no definate diagnosis, but likely,  pet scan showed uptake and the ct 3 months later showed growth. Now waiting another 3 months for another ct, no treatment planned unless I become unwell or can't take the mental strain! 

Well I am finding it hard to take the strain, the not knowing.

It's also too small an area to biopsy 

Hi xxHHxx,

Let's look at the positives. It has to be good news that it's too small an area to biopsy and it sounds as if they are keeping you under close surveillance. I know only too well what a torture the mental strain is and I truly feel for you having to wait so long. How are you keeping in general, since your original diagnosis and has this impinged much on your day to day living?

Do you have a good support network of family and friends?  Having someone to meet up with and talk to can be a great help. You might also find it useful to talk to a counsellor at one of the cancer charities, about how you feel. It's amazing how much better you feel when you unburden the load to someone that you can really bare your soul to. I spoke to someone at my local Maggie's centre. These are dotted all around the country. If there isn't one near you, there are a number of other cancer charities, which offer similar services. Your GP or cancer nurse should be able to point you in the right direction. Some of these centres also offer free alternative therapies, which might help you to relax a little. They are also a good place to drop in to for a chat and a cuppa.

Please keep in touch and know that we are always here for you.

Kind regards,

Jolamine xx

Thanks jolamine for your kind words.

Since I finished my original treatment  in 2020 I have been great , I have had very few issues. A bit of radiation proctitis,  but that's it.

Now that I have been told it  may be back and I need to have kidney stents I am in pain all the time.

In my legs, groin and bum cheek.  And the mental strain is just too much. 

The consultant said the pain on my bum may be the tumer pressing on a nerve ..... if she said that then she knows it's back... 

Pretty fed up and there isn't any local support groups I have to travel around 40mins. 

I may google some more 

Hi xxHHxx,

Let's look at the one big positive here. They haven't given you a diagnosis yet and no amount of worry will change anything. Your consultant used the word "may" ,I'm sure that if she knew that it was back she would have said "is" or something similar. Consultants don't tend to shield us from the truth, but say it as it is.

I am glad to hear that you have been keeping so well since your original treatment. We nearly all seem to be left with a legacy after cancer treatment, so I suppose that a bit of radiation proctitis is not too bad.

If you can't find a local support group on Google, then ask your specialist nurse, your GP practice or at your local library, if there are any closer to you, as I'm sure that talking to other people would be a great help to you.

Did you return to the hospital because of these pains or what made you think of a recurrence?

Please keep in touch.

Jolamine xx

I will take the proctitis over this anyday! 

I know she hasn't said is back but "further suggests likely reccurance " pretty much says it . 

And are pet scans wrong??

they scanned my colon to see how much damage had been done and saw somethingbelse which let to the pet scan! 

They never truly prepare you for the after effects of cancer treatment ! I do think more can be done!

I've just realised i have been so rude.... I've been waffling on about me and have not asked about you and how you are doing? 

I'm sure that you would - if only we got a choice!

Pet cans are not wrong, but in your case it doesn't seem to have found anything definite as yet, which has to be a good thing.  Is it not possible that what they see is scarring from your initial surgery and treatment? I had a few scares over the years and most of them seem to have been due to scarring, which felt and looked like cancer at times. I totally agree that they never prepare us for the after effects of cancer treatment. I suppose that there is a certain need for urgency in treating it and, if we knew too much about side-effects, we might delay for too long.

My mum had primary cancer and had a mastectomy. I eventually lost her to secondary breast cancer. At that time time, there was no support nurse for her and absolutely no after care, until the signs became obvious. Since that time diagnosis, treatment and after care have all made great strides and I am only sorry that they weren't available then. We are fortunate that there are still treatments available for all stages of cancer today.

Thank you for asking about my health. I am doing as well as I can post-cancer, although I have been left with a few legacies from my treatment, which I could well do without. Still, I have been fortunate enough to have had 14 years since diagnosis and for that I am extremely grateful.

Kind regards,

Jolamine xx

You are right, nothing is definate, and that's definately worse! I can only hope it is, but font want to get my hopes up.

It's true , knowing everything may casue people to delay getting treatment, maybe they should supply mental health support as soon as diagnosed. 

Got my appointment through for the urologist today, next Thursday. I will fond out if I can have stents or I need a urostomy bag. Oh the joys. 

I'm sorry you lost your mum, and that the care wasn't there for her. You right, the care has come leaps and bounds. 

14 years, that's great , and only few niggles! I'm so pleased for you . 

Hi xxHHxx,

The worst part of all is the not knowing. Once you know, you can get on and do something about it.  I am glad to hear that you have your urology appointment through and that it's fairly soon. Here's hoping that you can have stents and won't need a bag.

I suspect that even mental health support wouldn't stop delays, just after diagnosis. Yes, it was hard  watching mum deteriorate and not to be able to do anything. Unlike today, when they can offer chemo for end stage, she only had painkillers and even they weren't all that effective.

Please keep in touch and let us know how you get on next Thursday.  I'll be thinking of you and keeping my fingers crossed.

Kind regards,

Jolamine xx