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Hi Guys 

is there anyone on hear who has TNBC and had lumpectomy first ? I had and now started chemo .I have asked if I will have a CT or MRI at the end of my treatment to see if there is any spread .I have been told no by my hospital as it increases the risk from the radiation !! I was like What the hell how will I know if Iam ok or have mets ?? Is this normal or just postcode lottery of where you live ? I’m so concerned is this right . 

  • It’s the same in Leeds - I have asked and asked as it would give so much reassurance but been told it’s against protocol, that they don't’ want to submit me to radiation and that there is no evidence of spread. My argument is that they haven’t looked for evidence of spread.

    However it does seem to me that another people on the forum in other parts of the country do more readily get scans which I have raised.

    I will keep asking this question and may choose to pay privately for one. I always ask them to make a note in my notes that I have asked for scans and been refused.

    There is always a new curve ball isn’t there!

  • Thanks Jan , that makes me feel a bit better . I am going to go via the Gp first then I will pay for one too at the local private hospital . I really can’t believe that there isn’t a routine one at the end of the treatment !  Utter madness I think x 

  • I’m about to go on this journey too. I assumed they’d scan you after all the chemo and radiotherapy at the end of treatment. Otherwise, how can they say you’re cancer free without a full check? This does worry me.

    I’ve already found it really hard to wait around for the operation before chemo when so many go the other way around. 

  • It’s the same in Nottingham. I had lumpectomy first and 7 weeks later started chemo. About to have 2nd session this week.  I asked about scans but was told as not in lymph nodes they don’t do it. Only scan if in 4 nodes or more!!

    it is a worry …

    I didn’t think about going private. Is this something that should be done any time or at the end of chemo?

  • Hi Rok

    i think I will go private at the end of my chemo I just want to make sure my lungs and liver are clear .I find it unbelievable really how are we meant to move on ?they said it was because of the risk of radiation from the scan ? I don’t care cos if I have mets I want it sorting as soon as !! 
    It sounds as if it’s the protocol nationally if lymph’s are clear? But TNBC can travel without going to the lymph’s !! So scary for us all . But we have to remain positive that’s what my breast surgeon said that TNBC patients are doing well .

  • Hi

    It's the same in Lincolnshire. I had a lumpectomy, followed by chemotherapy and then radiotherapy. When I asked if I would be having any scans I was told that I didn't need to be scanned as the operation had removed all of the cancer and that the chemotherapy and radiotherapy were adjuvant treatments rather than treatments to get rid of the cancer.

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  • Same here. I had lumpectomy then chemo. Early stage, no lymph node involvement. Had CT part way through chemo to investigate diverticulitis and it found I had a secondary on my liver. I would not otherwise have found this until it was far too late. . 

  • Hi codfish 

    How are you doing now with the liver mets ? I really can’t believe that if you hadn’t of had your CT scan when you did you would never have known untill you were very unwell !! What can we do ?? I think it’s madness but they keep saying it’s because of the risk of too much radiation ? Sending you a big hug x

  • Hi  

    It has been quite a long story. I had early stage grade 3 TNBC, found on a mammogram last January. 18mm lump, no lymph node involvement, adjuvant chemo recommended as I had a high risk cancer with vascular invasion. I had ended up in hospital in August with what turned out to be diverticulitis about half way through the chemo, just after I had moved from EC to Paclitaxel. I had a chest, abdomen, pelvis CT scan then. Results took 7 weeks to come back, no one bothered chasing as the diverticulitis had resolved. I was about to enter my final 3 weeks of Paclitaxel when the CT result dropped with an ‘“oh and by the way we think you have a secondary on your liver”. Cold, over the telephone. A further 4 week delay to organise PET-CT, liver MRI, and PD-L1 testing of original breast tumour. Meanwhile I finished chemo, had radiotherapy. Next action was to take a biopsy from the liver and blast it with microwave ablation. That happened in December. 

    Then 3 months watch and wait. A new round of CT, PET-CT, and liver MRI showed the tumour had regrown at the ablation site and there was another elsewhere in the liver. The larger one has progressed a bit more since and now has satellites. I restarted treatment 4 weeks ago, a combination of a checkpoint inhibitor immunotherapy called Pembrolizumab, and NAB-Paclitaxel. Interestingly during the time I have been going through this, pembrolizumab has been authorised for neo-adjuvant treatment of early stage PD-L1 positive TNBC. But only for tumours greater than 2mm or where lymph nodes are involved, so I wouldn’t have qualified anyway. 

    There seems to be a real gap in recognising vascular invasion as a major risk factor for the spread of high risk cancer types. 

    I am well in myself, tolerating treatment well, just hoping the immunotherapy can make a difference by allowing my immune system to ‘see’ the cancer. Cancers that use the PD1-PDL1 pathway effectively hide from the immune system. 

    As for radiation, I seem to forever be having scans now. Plus the radiotherapy was an utter waste of time as the horse had already bolted. 

    Hope you are well. 

  • It’s so scary bless you , thank god you had the scans and now on treatment . I’m ok had first chemo EC on 14 th June next one 5th July .

    Feel ok to be fair I just want a scan to check elsewhere ,  I think I’m going to pay privately otherwise I will never settle and will find it hard to move on . Take care lots of love to you codfish xx