Our next appointment at the hospital after being told about the cancer, was when things started to get a little bit complicated. The first appointment hadn’t been at the local hospital, so they arranged a transfer to a new doctor and new team to look after my friends care. In theory it was better to do this before treatment started, so appointments would be closer to home. I’ll be honest, we were apprehensive about moving. We really liked the first consultant that we met. I think the person that tells you that you have cancer is the person that you probably remember most.
We had already discussed the plan with her and we knew that my friend needed a mastectomy followed by chemotherapy. So we were under the impression that on this next appointment we were going to finalise the type of mastectomy and get an operation date.
It seemed straightforward right? Let me explain to you what happened…
We went to the clinic and sat waiting again. A young doctor came into the room and started asking my friend questions about why she was at the clinic. My friend explained that we had been to a different hospital and transferred here to continue the breast cancer treatment. The young doctor looked surprised and exclaimed ohhhh goodness! She promptly turned around and walked straight out of the room without another word. We all stared at each other. How bizarre! Clearly she hadn’t been expecting that answer. We heard her through the door say to somebody else that ‘the woman that they were talking about is here’. Ok so maybe they did know about us. We waited for another five minutes, nobody came back.
Finally we got the cancer patient treatment, the consultant walked in looking very important followed by the Macmillan nurse. They introduced themselves and we recapped the story.
Then she began to tell us that she had treated lots of young people with cancer and that there were lots of options in terms of management. This seemed a bit like a step backwards but we heard her out. She said that they most commonly do chemotherapy first to try and dissolve or shrink the cancer. Then whatever is left of the small lump, if anything is left at all, could be removed with a small operation. It sounded almost magical.
Alternatively we could go ahead with the mastectomy, but it was a bigger operation and she would still need the chemotherapy anyway. It felt as though the doctor wanted us to choose the chemotherapy first. She also said we had time to discuss and explore options as the cancer was small and caught early. ‘These things take months to grow and spread not days or weeks’ she reassured us.
That’s when we piped in, this all seemed very nice to hear but we understood differently. The MDT meeting in the previous hospital, which involves all the specialists, decided that in her case because it was an aggressive cancer removal as soon as possible was the better option. Plus removal would give time for egg preservation. Obviously that was something that my friend was keen to do, which is not possible if chemotherapy is done first. She asked my friend if the egg preservation was actually important to her and if my friend had a partner, she said yes it’s important and no partner, the consultant replied ‘well unfertilised eggs don’t freeze as good and your fertility will probably come back so do you really want it because that limits our treatment options?’. Easy for her to say! There’s still a chance her fertility wouldn’t come back and then she would have no eggs preserved.
The consultant didn’t have all the information about her, she was waiting for the other hospital to fax her the notes as she spoke to us even though they had already sent a letter through. This was poor planning we thought. She had a full week to prepare, she knew that we were coming but she didn’t have the information.
It was confusing. We had been given one plan, then we were told there were other options which may be better. We continued asking questions but we didn’t really get enough answers. The information wasn’t with the doctor yet and it hadn’t been discussed within this hospitals MDT.
This was all very frustrating, we thought we were going to get an operation date. We knew that the operation would have to happen within four weeks of the diagnosis, as that is an NHS target but time was ticking away. We had already waited one week.
Then we were told to come back the following week after they had time to discuss it. We wanted answers now. We knew what we wanted and we trusted the information given at our first appointment. It’s hard to take days off work every week with such short notice to not be told any useful information. We did respect the consultant, obviously she is an expert. We wondered if we were being too pushy towards the doctor? Or were we pushing a friend into a big operation when actually she may be able to have chemo and only require a small lump removal?
It’s hard to know what the right thing to do is. I worry when a doctor is struggling making that decision, how does it feel for somebody who has no idea what any of these terms mean?
We left the clinic with more questions than answers. Now we had to wait another week and the plan we initially got our heads around was all up in the air.
We rang the MacMillan nurse that we had seen on our first appointment. We wanted to talk to someone who might be able to give us some information. We wondered whether the first consultant had considered this alternative of chemo first and advised us against it or whether we should be considering it as a new option.
We discussed it between us and with my friends family. She needed egg preservation and there was no guarantee chemo would be successful at shrinking the cancer, although there was a good chance it would.
To us the only viable option with a small grade 3 fast growing tumour would be a quick removal followed by egg preservation as soon as possible and then onto chemotherapy finally.
Now we just had to wait for this new consultant to meet with her colleagues and discuss it again and hope that she maybe decided to agree with us…