Newly diagnosed

Hello,

Here is my update from yesterday......the oncologist was lovely and has given me my plan of action. There was nothing further of concern on the CT scan, which is good news. She said there were a couple of things that showed, like possibly a cyst on my liver but nothing she is concerned about. I guess by the time you have been using your internal organs for 47 years, they are not going to be sparkly like new !!!! LOL

My HER2 is positive so I am having chemo before my op. We start next week. I have the pre-assessment on Monday, then I can only get in for the heart scan on Thursday, so my first treatment will be Friday 23/8. I'm having 3xEC then 4xDTP at 3 weekly intervals. I then have 14 more sessions of just the T & P, these are apparently the hormone treatments. But while these continue, I will probably have my surgery around March time. I will then continue with hormone treatments and be monitored by the breast care team for the next 10 years!

It's quite daunting to think that this will be part of my life now for such a long time, but I feel positive that we are now on the road to getting sorted. Of course, they can't give you any guarantees of no recurrence in the future, but nobody can tell you in the first place that this will never happen to you. By the time all these drugs have zapped my whole body, I must be in with a shout of it not coming back.

I'm glad things are moving and I knew chemo was coming first, and soon. I thought I was ok about it but then when they have to go through and tell you about all the side effects, I admit now I am feeling quite scared. It's not even the hair loss or aches and pains but how careful you have to be not to get an infection because that can be serious, or the effect it can have on your heart, or the risk of blood clots. I'm starting from a good position in that I have always been fit & healthy, I'm not particularly prone to infection but am I going to be a nervous wreck for months thinking something might be wrong? I just keep telling myself, other people have got through this so why can't I? I think I'm going to join the August chemo chat in the other forum and get some moral support.

I did feel a bit angry today for the first time. Only a month ago, I was having a nice life with not many worries, suddenly now half my life will be sat in hospital waiting rooms and the chemo room. I felt a bit emotional yesterday when I saw the chemo room for the first time. How can it be me that is going to be in there?

So that's me, I'm scared but I CAN do this. Hope you other ladies are doing ok

xx

Hi I am Hert 2 positive and had lumpectomy with further surgery on Monday. I am concerned that this may have spread being more,aggressive and I have not even seen the oncologist yet. Anyone else had surgery before chemo?

West End Girl you sound so positive, and you're right you can do this. Everyone feels scared but i assure you that once you've had you're first treatment it won't be as scary. In fact i walked out after my first treatment and thought, was that it??  

We'll all be here to help you through to answer questions and give out hugs when you need them. I think everyone worries about it coming back, i know i do but as the weeks pass i don't seem to think about it as much. Try to think of the chemo as something that is making you better, although it will make you feel poopy some days but i had more good days than bad days.

Go say hello in the August Breast Cancer chemotherapy chat 2019 you'll fond people going through the same or who have been through the same. This place was a life saver for me, knowing i wasn't the only person having chemotherapy and gave amazing support and advice. Also made some lovely friends.

In my opinion i don't know why they tell you about the side effects, i was given a book with them all in and started reading it but after the first page i put it down. I didn't want to know about things that MIGHT happen so decided to wait and see what did. Yes i get that you need to know about the risk of infection but by making simple changes you'll be fine. I'd mainly say don't let anyone visit who is poorly or just recovering from something. The hardest thing for me was stopping giving and getting hugs but it was worth it in the end. Now i hug everyone even more. 

You can do this and you will do this, go kick butt girl xxx

and give us a shout of you need to know anything.

Hi West End Girl,

Sorry this is a very reply...I’ve been very busy with the kids and just not been on here.

I hope this message finds you. I also hope you first chemo went ok. The chemo itself is usually ok, it’s the side effect as you know,, you will come out the other side of this tho, a bit bruise, tired and relieved chemo is over, but you will know you did the best things you could to get a positive outcome.

You will worry about infection etc, I had the dettol all in one spray in most rooms in the house, went through lots in the 4 months I had chemo, but it gave me piece of mind, if you’re general healthy as I was, you should be fine, simple checks like doing your temp everyday etc does help, any concerns you have speak to your oncol team.

I didn’t have any problems with EC, apart from the hair loss and bad taste in mouth. I was able to continue with my normal routine, I didn’t even feel that tired, I walked everyday to keep my energy levels up, but also rested at night. You just have to get the balance right for you.

Wishing you lots of luck, pls keep in touch x

Hi there,

Back in December I was diagnosed with triple positive breast cancer which had spread to my lymph nodes.  My tumour was 5cm and it just appeared out of no where, it must of been lingering for a while.

I too got my chemo first, which shrunk the tumour, which resulted in just needing a lumpectomy and lymph node removal.  Its 5 weeks on from my surgery and I have just been given the all clear :) I still have radiotherapy to go and on herceptin  injections for a year, another drug (cant remember the name) for 3 years and on zoladex every month for 10 years.  

I hope everything goes well for you.

Lots of hugs xxxxx

Hi , 

Great name btw.

I was hormone receptive but I had Mastectomy before chemo. I had the op last October, had ct scans etc, then started on chemo beginning of January.

Im presuming you will have seen your oncologist, have you got a plan in place now.

x

Hi Beachwalker 19

Thank you. I am due to see my surgeon tomorrow for further results and hopefully I will have a date to meet the oncologist to discuss a plan. I am only aware that chemo will be aggressive and will have herceptin alongside. How is chemo going for you?

BB

X

Beachwalker19 I'm on day 12 after 1st EC. I'm doing ok, for the first week I felt surprisingly well, I just got an irritable cough and did have a funny taste in my mouth. Cups of tea are not as refreshing as they used to be!!

I felt a little bit like I was waiting for side effects to happen, not knowing what the first one would bring but after I got through the first week, I thought ok, maybe now we concentrate on getting strong for round 2....bring it on!! Then yesterday afternoon, I got really queasy and couldn't do much. Didn't feel like eating. So this morning, I felt a bit better but decided to just have one of the anti nausea meds they had given me for if I needed them, that seems to have perked me up and today I felt much better.

I do feel a bit nervous when I have to check my temperature but so far I can tell it is generally going to be ok. I too will be keeping Dettol in business for the next few weeks!!

So I will see what tomorrow brings, luckily I haven't had to go back into work yet so I can just take it easy when I need to.

Thanks for replying.

xx

Hi , 

Just wondering how it went with your surgeon, if you got your other results and have a date to see oncologist.

Im finished with treatment other than taking Anti Hormone meds. I finished Chemo end of April and finished radiotherapy end of June.

Here if you want to chat, 

Gentle Hugs x

Hi West End Girl,

Im glad your first chemo went as well as it could. Are you cold capping? 

I was really lucky I had Akynzeo tablets for sickness which I took at home about 2 hrs before chemo, it really helped me, I wasn’t nauseous at all. 

Best thing is to take your anti sickness as you did, which is as soon as you feel nauseous.

For me, one of the worst things while I was on chemo was having to inject myself with Filgrastim, to stimulate white blood cells.

I hated that more than going to chemo lol.

Listen to your body, I walked everyday to keep my energy levels up, but rested at night.

Wishing you all the best for round 2, just remember every chemo is a step closer to wellness, take each day as it comes. Have a chemo treat, go shopping, meet with friends, anything that you like to do. I found that helped me.

Keep in touch.

Gentle Hugs x