Breast cancer chemotherapy decision dilemma

hi Morsey

welcome to the online community, sorry you've had to come and find us ( I actually can't tell if you've just joined, the new style site is still a bit of a mystery to me)

I was very anti chemo when I was diagnosed in 2015, I was told I 'only' had DCIS or the earliest stage breast cancer and would 'only' need a mastectomy. The team were literally all smiles when they delivered that news.

With the benefit of hindsight I realised the team were delighted with what, for them, was very good news indeed. 

Post surgery showed Her2+++ and all the smiles vanished and I was ushered down to imaging for CAP and bone scans. Thankfully all clear.

The oncology team said chemo was advisable but when I showed reluctance they began to insist, in fact they jokingly said they'd lock me in the room until they could persuade me. 

I think they were joking...

Anyway, I was looking around for anyone who had refused chemo and lived to tell the tale and hadn't kicked themselves and found a very nice lady who had had lobular breast cancer and she said it was well documented that lobular doesn't respond to chemo in the same way ductal does. So that's something to discuss with your team. 

But chemo carries a risk, 10% for all cancers and all patients. It's less for breast because we are an easier group to manage, we turn up and follow instructions for a start. A breast cancer can be removed, unlike some other cancers. Generally I think we all agreed the risk is around 3-4%. So three or four breast cancer patients will die of the chemo treatment rather than the cancer. A lot of these are down to sepsis which is a huge side risk. The chemo blasts the cancer cells but also destroys our white cells leaving us open to infections.

A 4% uplift with a 4% risk equates to zero benefits. That's something else you can discuss with the team. The benefits MUST outweigh the risks.

Every surgery carries a risk of inadvertently leaving stray cells to circulate and potentially settle elsewhere, something we need to avoid. Chemo mops up any stray cells providing belt and braces protection against spread. The fact you had to have further surgeries means this is a factor you need to consider, again, discuss with the team. 

Chemo is brutal, I watched my blood tests show every vitamin, mineral and level drop to almost nothing and had to take potassium supplements to get through my last session. But everyone agreed I'd sailed through it. I worked, as well as I could, but if you have sick pay take time off, chemo brain is very real.

Last point, for now, age is a big factor. If you're in your 30s they tend to throw everything at you. If you're in your 80s, what's the point, you have to die of something. I was 53 and I was being told I was young and fit, which was lovely but the point is you're buying time, six months of crap for 30 years. It's a no brainer. 

actually this is the last point ... I am only just feeling like I'm 'over it'. The chemo only lasts six months but the after effects do take some time to fade away.

that's my tuppence!

hugs

Carolyn

xxxx

Hi Caroline,

thank you so much for taking the time to reply, your post has been so incredibly helpful and informative. It has given me a bit of a new perspective and I feel a lot more prepared for my upcoming appointment. I am 58 so yes I could have a lot of years ahead of me but looking at the balance of benefit to risk plus the additional stresses it would cause, the BCN thinks we would have to shield, I feel a bit more confident in saying no. I’m sure, however, that it will be like all the “decisions” we have been asked to make up to now in that the Consultant will steer us in the direction she thinks best and I think it’s a good idea to trust in their expertise unless there a very good reason not to!

I’m sure you must be so glad to be at the other side of it all and recovering, it’s such a shock to be tossed onto this rollercoaster and it’s good to see the stories of those who have come through it all, it keeps in mind there is light at the end of the tunnel. 

Thank you again, I’m so very grateful for you taking the time to respond.

Morsey