Triple Negative Breast Cancer

OMG. I read this and thought this is exactly how I feel. 

Have you had surgery yet or are you doing this after chemo? 

I have just had surgery to remove tumor and 3 lymph nodes and cells were found in 1 out of 3. I have to have another op next week as they didn't get enough margin and then I should start 6 cycles of chemo early September and the radiotherapy.  They are also going to give me immunotherapy drugs too which are meant to be good but my cancer is ER and PR positive and HER2 negative.  

I also asked if they would do a body scan to make sure it hasn't travelled in my blood to say the liver and also to my bones.....they said it would usually go to nodes first...but I don't like the word usually.  The NHS are saying they do not do a body scan at this stage..

I have private medical cover and I am going to ask if they can do additional scans to put my mind at rest and I am also thinking about the need to do them frequently.  I was also told the CT scan can be dangerous and that's why they don't use it unless they feel they need to. Partner me thinks is it down to money.  I think most people would pay if they could just for peace of mind. 

Does anyone else have any experience or thoughts on this? 

I am sorry you both find yourself posting here on a TNBC thread. Unfortunately because it's  already a negative tumour we have to rely on the op removing the tumour and the chemo and radiotherapy killing any residue cells. I say ' we' because I too had TNBC but I hope it reassures a little to know that I had it in 2015. At my unit a full body scan....PET scan ....is normal practice for every patient either during or after treatment. Mine was clear after the lumpectomy so I knew the chemo/ radiotherapy were precautionary. It seems to have worked. My surgeon saw me yearly for 5 years and then said that cancer was unlikely to return....but he warned that I must stay vigilant as whatever caused the first cancer, now because success with treatment means we usually survive longer,  there is always a possibility another new cancer could develop. So I live in an area where I have an annual mammogram and echographie. Friends who had TNBC 9 years ago have chosen to pay privately for a yearly mammogram for peace of mind. I think a mammogram is probably affordable but the PET scan privately might be expensive.

I wish you both well. I know treatment isn't always pleasant but I think you can have confidence that these days it is usually successful.  Take care. Love Karen

I had an experience that makes me think they should routinely scan people with higher risk cancers like TNBC at the end of treatment. I had what was thought to be early stage TNBC. Lumpectomy, the samples nodes clear. LVI at the tumour site. I had adjuvant chemo just in case. 24 week, EC followed by Paclitaxel. Part way through this I had an emergency hospital admission with infected diverticulitis. I needed a scan to confirm and the oncologist decided to make it a chest, abdomen, pelvis staging scan just in case - “we do t expect to find anything sinister”. It found secondary cancer in my liver, presumably it had been there before my lumpectomy, cells travelling through the blood stream. This bit of misfortune probably saved my life as I then went onto immunotherapy (Pembrolizumab). That, plus some liver ablation, has so far given me a sustained remission.

So yes, I would ask why they are not offering a CT scan. I suspect the reason is money. 

I did ask the breast cancer team and they just said they have no reason to believe it would be anywhere else and therefore they won't do any more scans.  I have read your story Coddfish on another thread and I worry that the same could happen with me.  You are very lucky (and unlucky at the same time). I will ask my private insurance if they can step in and do some more tests just to make me relax a little. 

I am newly diagnosed with TPBC. Small breast tumour and found in one lymph node on biopsy. I have private health cover (although I think I would have been offered it even if I hadn’t) and have had full body MRI and chest/abdo/pelvis CT scan. Although waiting for the results was agony it has given me as much reassurance as possible that my cancer is localised. This is a big relief and has enabled me to stay so positive about making a full recovery. If you feel it would help you mentally, I can’t see the harm in organising these scans. But that’s obviously totally your call. 

I have TNBC too. I had a petCT scan before treatment started in November but not since.

I have had 6 months chemo and surgery 4 weeks ago and am waiting for radiotherapy but I have had a pain/ache in my hip/left leg for 2 weeks and I’m petrified it’s spread to the bone. My consultant is reluctant to do a scan as he think it would delay the radiotherapy which I need due to possible isolated cancer cells.

I am petrified it has spread and progressed to stage 4! But don’t want to delay radiotherapy that I need.

I have an appointment with my oncologist on Wednesday so I will discuss it again then but I am so worried!

Thank you Bonnie. I will certainly look into this. 

Hello Kiwi79

Can you ask your Oncologist to arrange an urgent scan so your radiotherapy isn’t delayed?

Hello

I had a left mastectomy in May and am currently having three sessions of E/C and then three sessions of Docetaxel. I trust the team providing my care but can’t get rid of these nagging thoughts. I think further talks with the team may change their minds although I also feel that there are monetary restraints.

I will speak to him tomorrow but they said it’s not that they can’t get the scan done quickly it’s waiting for the results plus if anything shows up they need to investigate which will take time and delay the radiotherapy. I’m just so worried and don’t know what to do for the best!