Now being six weeks post op I was starting to panic about my radiotherapy not starting. After phoning Dr J’s secretary numerous times to chase up the appointment to no avail. I happened to be in the hospital one day and decided to doorstep her. I don’t think this is normal practice as there were alot of surprised faces when I arrived at reception and asked for her by name. I think she was even more shocked when they rang her to tell her I was standing at reception. I had no intention of being angry or cheeky all I wanted was to know that someone was actually looking at my case and referring me to Radiotherapy. A simple phone call would have sufficed, however when I didn’t get that I did the next best thing and went and asked in person. She assured me she would get someone to look at it and get it referred that week. Again I expressed my concern that it was now 6 weeks post op and I would really like to get radiotherapy started. The following day I got a phone call to tell me I had an appointment with a Medical Oncologist* to discuss my radiotherapy. (*there are different types of Oncologists one specialises in Radiotherapy or Chemotherapy or both).
On Good Friday I had my appointment with the Medical Oncologist to discuss my radiotherapy plan. As I had a double mastectomy I had been told by Dr J I would receive radiotherapy on both sides which made sense to me. At this meeting the Dr explained that I would receive 5 weeks of radiotherapy on the left side as well as the collarbone area and under arm which was all standard practice for Inflammatory Breast Cancer. I was then told that as I had a mastectomy on the right side and there were clear margins between the tumour in the right breast and the chest wall that I did not need radiotherapy on that side. I remember her exact words to me “I can think of a hundred reasons why I wouldn’t give you radiotherapy on the right but can’t think of one why I would give you radiotherapy on the right.” The words and manner of her really struck me as I was already a bit of an emotional wreck with everything going on. She also advised me that it would be another 3 weeks before I started Radiotherapy. This shocked me as I was always under the impression from discussions with my oncologist that I would get radiotherapy on both sides and that radiotherapy should start within 6 weeks of surgery for Inflammatory Breast Cancer. My sidekick wasn’t with me at this appointment as she was in Donegal on a well deserved break for a few days so I was totally on the back foot with this one. I left the hospital and cried the whole way home worried that by not getting the radiotherapy on the right would increase my risk of a recurrence.
On my way home I went straight to my GP’s surgery as I had an appointment to see her. When I was called in I burst into tears and told her everything about knowing there were other chemo options, not being entitled to a second opinion on the NHS and the appointment I had just had with the Medical Oncologist. She calmed be down said she would get a referral letter sent to the Royal Marsden, speak to my Oncologist about Radiotherapy and upped my dosage of anti depressants to help me deal with everything.
I received a phone call the following week from the Royal Marsden to advise that a Professor in Breast cancer had been appointed my case and that I should attend a meeting with him on the 15th April. Over the past week I had developed a new rash on my Inflammatory Breast Cancer side. Not knowing whether it was anything to be concerned about I left it a few days then rang the breast care nurse. I explained to her what the rash looked like then emailed her a picture. After speaking to Dr J she told me to come to the breast clinic to get it looked at and potentially a skin biopsy.
At the breast clinic I met the Registrar who had assisted my surgeon with my double mastectomy. He was again really nice and told me he had done the mastectomy on my right side and my surgeon had done the one on my left side. I told him how pleased I was with the surgery as it was really neat. Another surgeon came in to assess the rash pointing to 3 areas he wanted the biopsy taken from then left the room as abruptly as he had entered it. Another of my experiences of surgeons and their tolerance of time for their patients.
It became evident that everyone was aware of my forthcoming trip to Royal Marsden. I felt like I had to explain my reasoning to why I felt the need to go. I told them the fact that my cancer hadn’t responded to the chemo I had to give myself peace of mind that I was doing everything I could to prevent this from coming back. They said they understood and that it was totally within my right to seek a second opinion. They told me that I wouldn’t have the results of my biopsy back before I went to the Royal Marsden the following Thursday but did tell me that I was getting radiotherapy on both sides as Dr J had requested that due to my recurrence during chemo he felt it best that radiotherapy was needed.
The following Wednesday evening my sidekick and I boarded a plane to Gatwick. We would stay at the Premier Inn at Gatwick airport then get a taxi to the Royal Marsden to meet the Professor the next day.
My appointment was for 3pm so we arrived in a very busy hospital and were directed to the registry office were I had to pay the money for the consultation. We were then directed into a quieter end of the hospital with free tea coffee and mints. Oh we were definitely in the private clinic now. After a period of waiting I was taken in and introduced to the Professor and a Breast Nurse.
He went over my diagnosis and after a long consultation which I will not bore you with he said I said business but to sum it up I left that office feeling so relieved that finally someone was talking the same language as me.
He recommended that I should be genetically tested as my cancer was behaving like a BRCA mutated cancer and the fact I had family history of breast cancer, was under 40 when diagnosed myself and was Triple Negative all factors which would imply I had a genetic mutation. He also recommended that I should be given a platinum chemotherapy which had been proven lately to work better with Triple Negative cancers and BRCA mutated cancers. He advised me that he would write a letter to my Oncologist with his recommendations. We left the hospital and headed to the airport in a taxi. I phoned the Breast Care Nurse to see if the results of my skin biopsy were back she told me they were and that everything was ok there was nothing sinister. At the airport I sat in the bar and had a large glass of chardonnay as I felt such a sense of relief for the first time in months.
The following day the letter from the Royal Marsden was faxed to my Oncologist and GP and a copy emailed to me. Seeing the Professors acknowledgement of the complexity and aggressiveness of my diagnosis really brought it home to me what I had actually been through in the past 8 months. However seeing his recommendations gave me so much hope that I would definitely being doing everything in my power to stop this from coming back.
Was I wrong there? once again it wasn’t going to be as simple and straightforward as I thought and I was going to have many, many arguments before I could get a chemo which could potentially stop this beast from coming back.