Triple Negative IBC

Hello Katy..,.

Five years ago I had the same diagnosis as you .My treatment plan was very similar except, I think because my tumours had been found early by a mammogram, my operation was done first. Fortunately my pet scan showed there was no further cancer spread. I had the same chemo protocol and radiotherapy. 

Hopefully you will not have too many side effects from the chemo. It is impossible to tell you what to expect as everyone reacts differently.  My advice is if you feel any adverse symptoms pop a question in the monthly chemo thread. There is always someone who can advise or commiserate. There is a dedicated post to chemo preparation on this site if you put it in search. Sorry I don't have the link.

If you are worried and need cheering up.....Awake always has people popping in and out. Often in the middle of the night when the ' what if's' creep in. There is usually someone who will offer support. 

The treatment may be not be pleasant and at this point you will be feeling both shocked and scared by the unknown but it will be ok . Time does pass. Life will probably change a bit but one day, like myself, you will be looking back on the hard times and encouraging others as sadly this awful illness never stops developing in someone.

I wish you well. You are on the way to recovery now you have a plan to follow. Take care and stay safe from Covid19.

Love Karen

Hi Karen

Thank you for your lovely reply.

Yes I am a bit scared of what's still to come but at the same time looking forward to getting treatment started, if that makes sense?

Was very shocked when I was first diagnosed just over a week ago as had to go through all that on my own.

Find I'm ok telling family and friends details but they don't all seem to deal well with this, as expected, but I am the kind of person who likes to know all the facts as I deal with things better that way.

Just feeling a bit knackered tonight as its been a long day and as you say it's a bit of fear of the unknown.

So pleased to hear that this is all five years in the past for you, that definitely helps me to know this and remain positive.

Thanks for telling me about Awake, I'll look in x

Appreciate you taking the time to reply.

Katy xx

If you look into Awake now.....they're having a party. That should cheer you up and revive you after today.

I hope you get a good night's sleep. You sound as if you live in an efficient  area as they have got everything organised quickly for you. I was lucky too but some people wait weeks for tests and results and the ' not knowing' is draining. 

Don't  forget to ask whenever anything confuses you. Here you can rant, cry, ask questions, express your feelings and always there will be someone to empathise with you, advise or simply listen( cyberwise)

Thank you, I will do x

Hi Katy

Just wanted to send you my best wishes and say I am sorry to hear about your diagnosis. I had Invasive Ductal Carcinoma rather than IBC but mine was also in some lymph nodes. I've just finished active treatment and moved onto Letrozole. I also had EC and Docetaxel for the chemo part of the treatment. Try to hang in there and stay strong if you can. Once the treatment is underway, it does actually distract you from dwelling too much on negative thoughts because you will have a lot to deal with practically. As unpleasant as the chemo can be at times, there are good days as well as bad and I always looked forward to the 'recovery' weeks within the regime.  This is the first part of your road to recovery. You can get there. One step at a time. A friend told me at the start of treatment (she had also had breast cancer) not to think too far ahead in terms of treatment, just deal with the here and now because to look too far ahead can be overwhelming. She also said not to stress too much if there were changes of plan here and there for whatever reason. She was right. It will seem like a mountain you have to climb and you might not know how you will be able to do it. You can do it if you just take a few steps each day rather than try to race to the top, and ask for help whenever you need it. Sending a virtual hug x 

Thank you x Hope you are well x

You are so right, going at hundred miles an hour doesn't do anyone any good.

Feeling a lot calmer today and just going to take a day at a time.

Managed to get a decent sleep last night for the first time in weeks so that's helped big time.

So glad I found this community.

The support everyone gives is amazing x

Focusing on staying strong and postiive today.