Chemo or Not

Hi, my name is CJ. I was diagnosed in August 2012 but had my operation March 2013. Originally I was told that I all I could have was a mx not followed by anything else. They kep talking about how ill which I didn’t thinki I was too ill to have a reconstruction.
I later read in the telegraph that people in my area who are over weight we not entitled to a reconstruction. I couldn’t face having a mx so got sent to a larger hospital in my area who had the same policy. Even though my consultant kept trying to get them to agree to chemo to shrink my tumour it was decided that I had to hav. e a mx or nothing. I agreed to nothing as was told I could go away and die (not in those words). As we were leaving the hospital the called me back and referred me to another hospital. The third hospital after a few months and a lot of testing decided I had invasive cancer but still took their time getting to the operation. Apparently if was tough because I would accept a mx.
Now I have had my operation I’m told I had a 6cm tumour. It kept saying metastatic carsonoma. I’m not too bright but was concerned that it meant it has started to travel. It was in the nodes. Up until the operation they were saying its only dcis and no big deal as its only breast cancer. Now all of a sudden its serious. I am triple negative only I was sure what that meant but I looked it up and it doesn’t appear to be good news.
The oncologist kept saying that the chemo nurse would answer my questions only then I got a call to say I was due to start chemo on wednesday and there was no nurse avaiable to speak to be. I have many questions and I am so scared. I don’t want chemo but everyone keeps saying what about your daughter but I don’t know how ill I’m going to be or even whether I can look after her. I scared about what happens if I get ill when I’m home alone. I’m really scared about being ill with it and being alone. I know some people don’t get ill but I’m terrified. I only have until wednesday to decided whether to go ahead or not. I expect every one to say think of your daughter as that is all I have heard only what happens if I can’t look after her. Because I could drive she has already been away from home for six weeks.
I have had support from my friends but my family can’t face it so I feel totally alone with a decision that is so huge I can’t make it. Any advice would be greatly appreciated. I really think I’m going mad.

Hi CJ,
sorry to hear that you have had such a rotten time, your hospitals have certainly put you through it. I’m sorry too that your friends area not being very supportive. I am sure they will come round and find their own strength in order to be there for you. Don’t give up on the BC nurses; they are a font of information and i find mine so kind and helpful; sometimeI I have to wait for a call back, but they always get back to me quickly.
As for chemo, believe me I was/still am terrified of it, but I knew I had to go through it if I wanted a chance to grow old. My tumour was 55mm and after 3 lots of chemo it has shrunk to 30mm and my nodes are now clear. I start a different type of chemo tomorrow and am getting myself in a right old tizz, but I know I have to do it. I am illness phobic! You will gets through it, somehow you find strength and just manage. There is lots of medication to help and this forum is brilliant for getting advice.
I really feel for you and I totally understand how you must be feeling. Talk Tom your family, you won’t be alone, especially when they see how alone and frightened you feel; been honest with them. It must be difficult in respect of your daughter, but she is your reason to do the chemo.
Sending you a huge hug and I wish every the best of luck.
Jane x

I was told I didn’t need chemo when I was first diagnosed but then a MRI scan showed further cancer in my breast and I had to have an mx, the results from the mx showed it was in my lymph nodes and I go in tomorrow for them all removing. They now say I will need chemo, and i was hoping not to have it, I know it will ensure that the cancer is gone and I can enjoy years to come with my sons, watching them grow up and enjoying their life. I will battle anything and do anything to make sure that I am there for them when they need me. Talk to someone in the helpline on here and see if they can help you. Good luck x

Hello CJ,
I just had to reply when I saw the time of your post- so late/early. You must be very worried. Lack of sleep makes everything seem worse. I would encourage you to try and stay calm and know that you can get through this. You should ring the BCC line -it won’t be open today, but it will tomorrow.
I have had triple negative breast cancer twice. I have had chemo twice. The second time, I was terrified of the treatment. But with support, I have made it. I wanted to let you know as I hope it will give you some hope. This time last year I had just started chemo again. Now its over. Of course it is hard, but some people sail through with very few side-effects. I can understand your fears about being ill, and its all about planning around the cycles so that for the first few days you might be unwell, but you will then improve day by day.
I am not a doctor, but would have thought with a 6cm, triple negative breast cancer, in the nodes, chemo would be definately recommended. But if you are concerned, then make sure you get your concerns addressed.
As yet, you don’t know very much- e.g. what type of chemo, how long etc. Make a list of questions- what do you need to know- start to take some control back. You don’t say how old your daughter is, or whether you have any underlying health problems? My daughter was 2 when I was first diagnosed, and 5 this time last year when I had bc in my other breast.
Are you near a Haven or a Maggies?
There are 2 strands to your worries - the treatment, your daughter. You are also getting your head round a very recent diagnosis and as someone else said, you have been given the run-around.
There is lots of support. You can do this! Please ring the BCC line tomorrow. The ladies are lovely and can help you work a plan out.
Rattles x

Hello, thank you all very much for your advice. In the end they didn’t give me a choice. I said I didn’t want chemo and the nurse said “nobody does” and proceeded to administer chemo. So I made it through the first cycle and due to my lack of veins I have now had a portacath implanted. That was on thursday and chemo is on wednesday so lets hope things go better. I have joined a support group and found that going there when I feel down is the best thing to do. My daughters school has been fantastic in there offers of assistance things are going much better. Only now my hair as started falling out so think I will be staying indoors a lot more.
Once again that you all for replying i was just so mixed up then ill its taken me all this time to reply.

Hi CJ!

Your diagnosis sounds a bit like mine. They initially seemed to think mine was not too much to worry about, confined to the ducts, but in the end I had an invasive triple negative tumour in excess of 8cm, and in one node, so after an unsuccessful lumpectomy I ended up with a mastectomy!

Being triple negative has advantages and disadvantages really. The bad thing is that “targeted” therapies like Herceptin, and hormonal therapy is ineffective. But the good news is that you don’t have to stay on treatments for 5 years! Triple negative often responds better than other types to chemotherapy, and while the danger of early recurrence is considered “high risk” (that’s why chemo/radiation is highly advisable), if it doesn’t come back in the first few years, the incidence of recurring cancer drops away sharply, so that is the “good news”!!

Chemotherapy, while unpleasant, is really less likely to make you ill, than developing grade 4 cancer due to refusing it! It is doable, as they say, and at the end of the day you will know that you have done everything you could to be there for your little girl.

One thing I would add, about hair loss. It is REALLY IMPORTANT not to let it confine you to the house. For your physical and mental health, you need to get out and be taking some form of exercise. You mention your weight somewhere … one of the things that raise your risk of recurrence is excess weight, so if you try to eat healthy and take at least a walk each day you will be helping yourself to beat this thing. And although it seems strange, the more you do, the more you will be able to do, and the better you will feel.

So don’t become a hermit because you have no hair, … Stick on a hat, scarf, wig, or whatever you have to, but get out there and get moving.

It’s tough, but I’m betting you are tougher than you think! xxx