My wife was diagnosed with breast cancer in February. She is writing her own diary of her experiences and so I thought I would do the same online. I have found that reading about others experiences helps take away some of the uncertainty surrounding what happens after diagnosis and on through treatment. I hope in reading my account of our experiences that it can help you in some way. It also helps me too. I find that writing it down helps me cope with it all as a partner.
Sal knows I am doing this and she has given her full permission. In fact she will read it and tell me if I got anything wrong I am sure.
So, the best thing is for me to report what has happened so far in this first post and then I will just post when I can after that... so here goes!
A Lump?
Sally's story started about a year ago when she found a lump in her right breast. The GP said it was very small and probably nothing. It was simply left at that. However around February she noticed that the lump had grown so a visit to the GP resulted in a visit to the hospital for a mamogram. They didn't like the look of that and so an ultrasound showed the lump was quite dense. They stook a biopsy and biopsied a lymph node that looked suspicious.
Soon after she was told that the lump was cancer. It was graded at grade 1 at that point but we were warned that they only biopsy a small part and so that could change. The lymph node was showing signs of disease. As the lump was quite big and as there was lymph node involvement we were advised that the best course was to have a mastectomy with lymph node removal (axilliary node clearance or ANC) and that is what she decided to do.
Surgery
The op was on Monday 15th March 2010. The op went well but Sal didn't react well to the oromorph and it caused a migraine (she gets migraines regularly anyway) so had to stay in for an extra night to allow her migraine to subside. She came out on Wednesday 17th March.
After a mastectomy it is normal for fluid to build up under the skin at the site of the surgery. This is a reaction to having the tissue removed and it normally reduces over time eventually disappearing altogether. However, it can become very uncomfortable and so in that case it can be drawn off by syringe. This is a fairly painless procedure carried out by a nurse or registrar. Sal had the fluid drawn off a couple of times but on the third the nurse punctured her chest wall with the needle allowing air into her chest cavity. This is called a pneumothorax and the air prevents the lung from inflating properly. Her symptoms was mainly shortness of breath and chest pain. An x-ray confirmed the problem and it was decided to admit Sal and have a drain fitted to allow the air out. She was re-admitted on Tuesday 6th April. The drain fixed her breathing but due to a mix up with doctors she didn't come out until the Friday!
Results of Surgery
A visit to see the consultant 2 weeks after surgery revealed good news and not so good. The good was that the CT and bone scans were clear except for what looked like cysts on the liver. An ultrasound was scheduled just to make sure and that was was clear. Other good news was that she is HER2 negative. The not so good was that on looking closer at the removed tissue it showed that her tumor was grade 3 (the most aggressive) and not grade 1 as we first thought. It was 37mm and was clear of the chest wall. 23 lymph nodes were removed 20 of which were diseased. I put that at stage 2c (but I could be wrong) but the stage is pretty irrelevent. What matters now is getting the treatment and trying to stay positive. In spite of this bad news the prognosis is still good. So it is 18 weeks of chemotherapy then radiotherapy. It is going to be a difficult summer.
So on the the next stage... chemo.
Chemo Assessment and Review
Chemo started out with a visit to the Oncology department to see the oncologist. It was explained and nothing was left to the imagination. This visit took a good couple of hours. She will have dexamethosone (a steroid) to help prevent alergic reaction to the chemo solvents, ondansetron and domperidone to prevent sickness, a new drug in England called Neulasta to help keep her white cells up, ciprofloxacin (an antibiotic) to fight any potential infections while her white counts are down. Sal has difficult veins but they use pediatric cannulas so they are much thinner and easier to put in so she will see how she gets on with those before considering other options (central line - PICC, Hickman or Portacath).
Sal has been put on the TAC regime. Taxotare (or docetaxel), Adriamycin (or doxorubicin) and cyclophosphamide. This is a tough regime given to breast cancer sufferers with disease in the lymph nodes. It is a particularly difficult chemo to go through (not that there is an easy one!) and so we can be pretty sure that her hair will fall out and that she will not feel well during the chemo period... which is 6 doses of TAC with a 3 week gap between doses so the treatment lasts 18 weeks. During that time she will have periods of fatigue, nausea, generally feeling unwell and a whole host of other potential side effects. Everyone reacts differently though so who knows what it will be like for Sal.
All this is a heck of a lot to take in all at once. We came away with out heads buzzing and a mixed sense of anticipation and fear of what was to come. The fear was more of what they couldn't tell us - how would Sally's body react to all this chemical attack? The only thing that helped was the fact that this was all necessary if she wanted to maximise her chances. As Sal said "bring it on"!
Getting Blood
Prior to each chemo session blood is taken and a full count done to make sure that Sal is able to cope with chemo. The blood can be done at the hospital the day before but many prefer it to be done at the doctor surgery but then it must be done 2 days before to allow time for it to be sent to the hospital for testing. Sal decided that it would be nice to have her blood taken at the surgery as it saved yet another trip to the hospital. Her first chemo session was booked for Thursday 22nd April so she went to the surgery on the Tuesday. On the Wednesday Sal got a call from the hospital saying they didn't have her blood results back yet. Apparently, they can get delayed when blood is taken at the surgery. So we had to go to the hospital on the Wednesday anyway for her to give more blood for testing. So we turned up at the hospital on Thursday for her first chemo. She has decided that she can't give blood twice everytime (unless necessary that is) so she is having the blood taken at the hospital everytime from now on.
Chemo 1
She was fine during the first chemo session. No reaction during administration of the drugs at all. She isn't using a cold-cap. It doesn't work that well with TAC so she is just going to accept it will fall out. In fact, Sal is having a sponsored haircut on Thursday before it falls out on its own. This will hopefully prevent any big shock of her lovely hair coming out in clumps on the pillow and it will raise a few pound for The Primrose Breastcare Centre, Plymouth. I have volunteered to have a sponsored hair GROW! I am not cutting my hair now until Sal's has grown back and she cuts it for the first time. I am being sponsored by the inch. It will be fun and quite difficult for me as I usually have a number 3 with the clippers!
The day after we had a visit from the district nurse. Sal needed an injection of Neulasta. It is a simple sub-cutaneous injection using a preloaded syringe. She showed me how to do it so I will be doing it next time. That will be a bit scary for me for although I don't mind needles I have never done anything like that before. Still, I am very clear on what to do so I am sure it will go fine.
It is day 5 today. Symptoms have been better than I had expected. She is very tired, slightly nauseous occasionally (but that is stopped effectively by the domperidone) and has a very funny taste all the time. Food tastes like cardboard! I am feeding ice lollies regularly (which seem to help a lot) and I shop for dinner an hour beforehand (we live 5 mins from a good supermarket) allowing her to decide at the last minute what she wants. Today she started the antibiotic ciprofloxacin which seems to have given her the runs so I will have to talk to the hospital tomorrow about that. She feels very unwell but that I suppose was expected... it doesn't make it any easier though! So apart from that all is going fine.
I am taking her temperature and blood pressure 4 hourly and it is showing a slight increase in temprature but well under 38 degs so nothing to worry about there for now.
I will report on how the rest of this first chemo cycle goes. Sal cuts her hair, has a wig fitting and sees the oncologist for a check up on progress on Thursday. I shall report back :)
BTW Chemo 2 is due Thursday 13th May.
