I can relate to the comments helen has made, in terms of how difficult it is for us as non-medical laypeople to make these decisions in an informed manner. Personally for me, I needed to do my own research/reading & go and get information from family/friends with the necessary medical knowledge to understand my pathology reports and what each option would mean if I chose it. I am extremely grateful for that, as I wouldn’t have been to make the choices if it was purely down to my own treatment team.
@idcand49 in terms of your hope “to hear if anyone else has also been ok’d to decide themselves”. That was me, in that I wasn’t told what to do, i.e. I was asked to make a decision/choice whether to have ALND surgery or not, and thereafter be referred to Oncology to discuss next steps radiotherapy, chemo, etc… I felt like I was being offered surgery or oncology treatment, but with no steers one way or the other, so I can relate to how difficult the decision making process is; but I did find relief at the point I finally made my decision, using whatever yardstick (information, belief system of what you find more important in your life) I used data and pro’s and con’s lists to help me, and then went with my gut. I have no regrets on those decisions one year on even if I do happen to get a recurrence in the future, as I feel I made them in an informed manner based on what was most important to me at the time.
It’s good that they have already put you forward for the prosigna test (one of the genomic profiling tests available). I had the Oncotype DX which is a similar profiling test used to determine if chemotherapy would be beneficial for my tumour profile; As I decided to go for ALND surgery, mine was done after the ALND pathology result was available - because if a larger number (3+) of lymph nodes came back positive then Chemotherapy would have been recommended without having the Oncotype DX test.
Just sharing the above information in case it’s useful. I can understand how overwhelming it can all get, but do hope you manage to get some time to switch-off/relax over the weekend; while it feels impossible it sometimes helps to get clarity on choices.
I had DCIS and following bilateral Mx they found 5mm of IDC and no nodes following sentinel node clearance. No chemo as oncotype came back too small to register.
Back now two years later as there must have been a cell that escaped and one node positive following a routine ultrasound. So now I have got Full clearance of nodes, chemo and rads.
I would recommend full node clearance and I am a similar age and fit and healthy and recovered well and 6 weeks later had full range. I also would do the rads as avoiding a recurrence and the dreaded chemo would be way more preferable than the unlikely threat of lymphedema (which I am told is way more manageable now and there are a lot of tools to help). My advice is take the most aggressive route to prevent you ever having to think of cancer again.
Hope this helps and best of luck in whatever route you choose.
It’s standard practice for a CT scan (typically a chest-abdomen-pelvis is considered a full body scan minus the head) to be requested immediately after, a positive lymph node pathology result. I’ve seen some members on this forum mention that they have had PET scan’s, so it appears that there is a difference in what’s offered (CT vs PET CT) in various NHS trusts/areas in the UK. From what I’ve read a CT scan shows detailed pictures of the organs and tissues inside your body; and a PET scan can find abnormal activity and it can be more sensitive than other imaging tests, it’s probably also considered to be more detailed & the actual scan takes longer than a CT which is done in matter of minutes.
The reason they request this as the first step after getting a positive lymph result is to rule out secondary BC before going down the path of requesting a genomic profiling test or offering ALND surgery (primary BC diagnosis/treatment path), because if the cancer has spread to other organs the treatment plan would be very different; e.g. chemotherapy or other oncology treatment more likely to be the next step; and no genomic profiling testing or ALND would be offered.
I’ve had 3 CT’s since my diagnosis, the first 2 were chest-abdomen-pelvis, and the most recent just the chest. My oncologist explained that they will be repeating my CT every 6 months to monitor a couple benign chest nodules that were visible in my first CT. Treatment and monitoring are very much tailored to the individual. So far there is no change in them and I’m due to have my next CT next month.
The fact that they sent you for a PET scan first is standard practice & good; and nothing to be worried about. Hope some of what I’ve shared above helps you while reflecting under the sun this weekend. xx
