When we went to see the oncologist he basically confirmed what we already thought would be the likely route of treatment and confirmed that the cancer had spread to the lymph nodes in my collarbone and advised I was HER2-positive as well which means that I can take the new drug herceptin and that the cancer is not hormone based , that is isnt fuelled by the female hormones oestrogen or progesterone
He can’t give me a definitive prognosis because of the aggressive nature of this disease.
Due to the “nature of the beast” Gertrude having started in the lymph nodes of my breast, has spread very fast to the lymph nodes in my armpit and in the last week to the lymph nodes in my neck.
I probably haven’t had “Gertrude” more than a couple of months. Because it is already in my lymph system I have already got cancer cells circling around my body. At the moment it appears that they haven’t found a home anywhere else.
Because it is already in circulation, I need 6 cycles of chemo 3 weeks apart to start with. I will start losing my hair 2 weeeks after the first dose of chemo so I have already booked or semibooked a haircutting/shaving party at the hairdressers mid-September. – exact date to be determined when I know exactly when my chemo starts. MDs boyfriend has offered to get his head shaved at the same time as me so we’re going to have a bit of a drinks and shave party.
I have already picked out a wig because I didn’t know it, but the nearest stockist that stocks the hair dye that I use, also are the wig and headcover stockist /advisors. I went there today to pick up some hair dye yesterday because I decided to dye my hair one last time before I lose it so it looks its best for the next few weeks.
At the moment I am in a lot of pain from the inflammation but the oncologist has prescribed 100mg Voltaren for the pain and Amitriptyline sedatives so I think that side of things is going to be much more under control.
My work has been very understanding – they will have to employ some one else to cover most of my shifts, but they have said I can work when I feel like it while my treatment is ongoing, although I did offer to resign if it was too difficult for them.
After all the chemo cycles things will be reassessed and then surgery and radiotherapy will follow. The order of which will be determined by how much they think they have got ‘Gertrude’ under control.
It is only then once they have done the mastectomy and autopsied my breast and lymph nodes that they will be able to give me a prognosis. If there are any cancer cells still living then they will repeat chemotherapy but the chances of me developing more secondary cancers is very high. If the cancer cells are all dead then I have a very good chance of being a five-year survivor.
The Chemo is likely to start within two weeks but before they start I have to have an ECG (seeing herceptin can affect your heart) and I also need a porta cath put in under general anaesthetic (this is a permanent tube they will put the chemo through. it will go into the vein in my neck with a reservoir and connection port in my chest ) as well as consultations with oncology and liason nurses and the oncology dr before the treatment starts. I am on leave from work as from this Saturday just for the next few weeks just while we get the chemo routine set up and know how I react to the chemo. I am hopeful to return to work for a few hours a week when my chemo cycle allows. My treatments will be daystay at Auckland Hospital.
The good news is that all my chemo (taxotere and herceptin) can be done in the public sector and because I have got it in my neck (classed as secondary cancer) I qualify for having the herceptin carry on in the public health sector after the initial chemo and the oncologist says due to the nature of ‘Gertrude’ at the moment he thinks I will be on herceptin indefinitely.
This is great news and has taken some of the weight off me and OH as we worried we would end up massively in debt if we had to fund treatment (our medical insurance would only cover so much stuff done in the private sector) OH and I have restructured our finances a bit so we dont need to worry about money while all this is going on.
We are trying to figure out when and what to to tell YD, more comments on this on a seperate page
The older girls and we are coping as well as can be expected and as you can tell I am trying to organise as much as possible before the chemo etc takes over.
MD calls Gertrude “Mad Boob Disease” and OD calls it “the Space Amoeba” (which probably means nothing to you if you havent read Piers Anthony, Cluster series Vol 3 Kirlian Quest – he’s one of my favourite authors) but suffice to say both of these are fairly accurate descriptions of Gertrude.
Will keep you updated as news and views come to hand