No Scans to Check for Metastasis

Hi Rozalia, good to hear you are cancer free and having anti oestrogen tablets to prevent reoccurrence. As far as I understand people can have MRI scans and PET CT scans with a radioactive tracer added to check/detect cancer so I’m not sure how a GP wouldn’t know that. Whilst they may not detect all cancers there would be ones it could pick up if it is a certain size I believe. Again not sure but your oncologist or breast cancer nurse would be able to advise or possibly a Macmillan nurse. 
Not sure how to go about having a scan done privately but maybe a company like Bupa might be able to help or point you in the right direction to find out. Or maybe speak to the hospital direct about paying for a scan as they possibly have a department that would handle things like that. 
Wishing you all the best.

Hugs from cuffcake x x x x x

Thanks Coddfish, really helpful. I’m so new to this I’m still not fully familiar with all the diagnostic tools. 

Thank You  cuffcake xx

Very sorry to hear of your new diagnosis.  I was diagnosed with lobular breast cancer Nov 2021. Operation was Jan 2022 for wide excision and lympth node sampling. As in both sentinal lymph nodes removed was offered full lympth node  node clearance ..which I agreed on. Tht was Feb 2022. Just before the second op my breast surgeon arranged for an adominal ct scan as I had explained I had been getting upper right side pain for a year prior but regardless of a endoscopy to investigate if peptic ulcers back in April 2021 and ultrasound Dec 2021..nothing had been found to explain the pain. So Ct done..was his  suggestion and I was very happy to have it. Nothing of interest on side pain found after results came through on Ct other than a possible area of density in pelvis which after long result wait needed a further scan on my bones this time. All the waiting for results very difficult..head goes wild a bit but at least there were results to be had eventually. No cause for upper right pain found at the time..frustratng and reaassuring on the cancer front at the same time. The bone area was judged to be a benign 'bone island'..a denser area of bone  but requiring no treatment. Tht final results chased up by me the day before my first chemo. Obviously it anything else found they would have reconsidered the chemo so was important. Throughout this my breast care nurse was kindly trying to chase results herself on my behalf. Long story however used to explain my care and help answer your very important question. By the time my chemo was decided on and planned tge results from my second op were through and 2 more cancerous lympth nodes had been found so I am classed as 4 from 10 cleared altogether as being positive for cancer. By thus result I was told...I live in the North East....that that result would have required a Ct scan but I jad already had one so was ahead of the plan there thks to my Breast Surgeons decision after first op. Chemo could then commence at end of Mar 2022. Hope this helps. Could be a post code thing as someone else else suggested or a lympth node positive result as another did. All my best wishes sent to you for treatment and any future investigations. Throughout my treatment my assigned Breast Care Nurse has been very helpful. Hope you get the same. Take Care. Keep us posted as you go if you can. 

Thanks so much for your reply. I didn’t see it until now. For some reason I didn’t get an email notification. I’m going to raise my concerns with the oncologist and nurses. I have bone pain and have had it for some time. It’s hard not to worry about pain unrelated to my diagnosis. My situation is complicated by having several autoimmune disorders too. It’s hard to unpick one from another. I just have to keep going and have faith that my treatment does the job and that anything that needs to be found is. I won’t be resting on my laurels though! 

Hi Carolyn 

Thank you for your reply I googled 'liquid biopsy circulating tumour cell test UK'  but have to admit to finding it a bit confusing. You kindly said you would look through the Ads. I don't like to impose but if you don't mind I would be grateful. I am as you suggest make some enquiries with my oncologist consultant. I don't see him now but I will write and see what transpires.

Many thanks too for the link to the Peter Harvey paper.

Trust you are doing well Rozalia xxx

Sorry for huge print, I meant to reduce before posting!!!!!!

Thks for reply. I agreed about concerns as I do now have further scan results to wait for. Scans arranged by my oncologist ( a new one to me as my original oncologist dropped doing the clinic at my chemo hospital to concentrate on other commitments). Was just too long winded to say before in first message but my upper right side pain  persists, sometimes worse than other days and the scans  arraed to double check if cancer related or not. If all clear the problem will be knocked back to a Gastro Enterologist at my local hospital. Never actually seen one face to face as in pandemic appointmts switched to on the phone. But next one would be face to face.  May I ask if you have Lobular breast cancer as I do?  My side pain has been going 2 years (ended up in A n E 5th Dec) and though bloods always are fine and previous investigations clear..as with yourself I would like an answer....be it something benign tht can easily be sorted of course..... Good luck and best wishes for 2023 to yourself, family  and all who are reading this thread.

Hi Busy Life

In the letter to the GP from the breast clinic my lump is described as a lobulated mass so I would guess that means it’s lobular. I know it’s HER2+ and grade 3 with lymph node involvement. I’m having a breast MRI on Wednesday, not sure if that will show more. I don’t have any other documents which describe my cancer, my GP hasn’t been given any more information yet either. 
I have other weird symptoms. My cancer is on my left side and since August I’ve had continuous swelling in my left leg, foot and ankle, the skin on my foot burns. I have swelling in my groin too. I’m hoping this will be investigated. I don’t think I’ll feel reassured unless I’m thoroughly checked over. Whether I’ll achieve this is another matter.

I hope your upcoming scans finally give you some answers one way or another. It’s awful feeling something isn’t right and also feeling that no one is listening. Good luck with everything x

I have her2+ and was worried about the same as you .I asked if I could pay for a yearly check and my breast nurse said it wasn’t necessary as I have had chemo and radiotherapy.I am still concerned because like you I worry in case it has spread