I was diagnosed in July with ER+ HER2- 18mm lump in my right breast.
For the purpose of symmetry I requested to have my healthy left breast removed too and had implant reconstruction on both.
Tissues were tested and found that I am node negative (but there was an Isolated Tumor Cell in 1 of 2 nodes removed) and two more lumps found 7mm and 5mm.
An Oncotype test was done and I was found to be low risk of recurrence so no Chemo (score 10/100) but one lump only had a margin of less than 1mm from chest wall so radiotherapy was recommended.
Because of my low risk of recurrence and being node negative I am deciding not to have radiotherapy as I feel the risks outweigh the reduction in risk of a risk that’s already very low.
But the big unanswered question that neither the oncology team nor my breastcare nurse have answers for yet is what will my follow up care be because I have no breast tissue. NHS does not do MRI scans as annual follow ups and that would be the most useful for my case, to see if anything has come back close to the chest wall.
Does anyone else with a double mastectomy have annual follow ups? Am I going to be left for 5 years just to look out for signs and symptoms myself?
Here in the US scans are not done unless spread is suspected. So in your case you would be monitored through your oncologist but no MRI, CT scans or mammogram would be given routinely. I assume the NHS probably does the same. The reasoning behind is that if spread occurs, it’s automatically letting the horses out of the barn so to speak. At that point catching it early or later doesn’t matter. The medication given to control it either works or doesn’t and considering the side effects of scans and the expense, the benefits of them are less than the risks.
I would ask your oncologist how you should be monitoring yourself. I’ve had a double mastectomy and no reconstruction yet (In the US reconstruction usually comes after active treatment) but still continue with self exams and bring up anything I notice in appointments.
i do not know the answer to your Q(and my situation is different), but i also had my tumour close to the chest wall. I personally now have had radiotherapy (and part of it was focused on the chest wall as well) as well as chemo , but i was told in case i will not go for it PET scans will be needed in the future to monitor my bones for the secondary tomours . I have a private insurance though, but maybe it is something , which is worth discussing?
I’ve never had any follow ups. Had chemo that finished in March 2020. Just as Covid came along and we were locked down. My last chemo was cancelled. I was then transferred back to my GP. It’s quite scary.
Told to keep checking that you don’t get any unusual lumps or bumps.