Pelvic ultrasound

Hi, glad that your PET scan was ok. As you had ER+ breast cancer, I am wondering if hormone therapy (perhaps Tamoxifen or an aromatase inhibitor depending on your age) is part of your treatment plan. If so, then a DEXA scan is routine, as your oestrogen levels will decrease a lot, and this can affect your bones. I don’t know if a pelvic scan is routine - I didn’t have one - but I am at the older end of the age scale. Maybe it’s because of the immunotherapy - that wasn’t licensed for early stage breast cancer when I was diagnosed. X 

I wish they were routine! In Leeds they seem really reluctant to give extra scans even with triple negative breast cancer which is an aggressive cancer. I have repeatedly asked and been told ‘no evidence to suggest warranted’ when my view is that they haven’t looked for evidence of spread.

Personally I would feel so reassured by scans. I’m thinking of going private but its annoying when I see everyone on the forum in other parts of the country getting these scans as what appears to be ‘standard practise’.

Sorry for little rant ,

Jan x

Hi JPH, I had my radiotherapy at Leeds - I thought the treatment excellent. I didn’t have a pelvic scan at my hospital either, although I did have a CT scan of my torso. I’ve also noticed that some people here have PET scans, but that was never mentioned for me. I also didn’t have genetic testing, but maybe that’s a more recent thing. However, I don’t know anyone in my family history who have had breast cancer or ovarian cancer, so maybe it wasn’t necessary. I hope you are doing ok. X

Morning early bird!,

Yes overall the treatment and communications have been really good. I just feel fobbed off by the scans issue. I have a friend also undergoing same treatment for same cancer, same place but she has lymph node involvement and also being refused additional screening scans.

Apart from that I am doing ok actually, although the genetics picked up a faulty gene mutation which means stark surgery decisions as risk of reoccurrence really high. I guess the reality of dealing additionally with this is fuelling my need for reassurance of no spread.

Plus my consultant has told me twice that it’s a national protocol not to offer additional scans when clearly it isn’t.

Bit early for another rant isn’t it? I had treatment yesterday so I’m going to blame the steroid rush!

Hope you are doing ok too,

Jan x

Good morning!! Well, I completely understand why you are requesting additional scans - especially after the genetics test. Im not sure why you are being refused, but if you can afford it, then perhaps have one done privately. I think that I would do that. If you have no node involvement, then that’s likely their reason for their approach. My hospital didn’t offer scans in that scenario either. It also might be because you have had a very good response to chemo. If it was a complete response, then that would also explain their decision. I guess you have to weigh up the psychological effect of it all and if it is affecting your quality of life. For me it would be bad, so that’s why I would investigate the private route

Morning again,

Im going to discuss again in my consultation with consultant again this Tuesday - bet he is looking forward to that! I will take it from there. I do understand the no lymph node/no need protocol but I also know it can travel through the blood stream and miss the lymph nodes.

I also had a significant medical surgical error back in 2018 (unrelated), the consequences of which I still live with - which of course they do have well documented. I think this is another factor why I feel I need a belt and braces approach and if the only way is private I will have to take it.

On a fantastic note, I did have a complete response to chemo half way through!!!! However their refusal to offer additional screening scans was before this. I have also tolerated chemo pretty well!

I’m grateful for treatment at all and to be alive! Especially as triple negative was so much more doom and gloom 20 years ago. I just want the scans so I can feel some sense of reassurance that I’m going to stay alive! Jan x