Terrified of upcoming PET CT Scan

Hi, I’m don’t have any experience to share I’m afraid, I just wanted to say that I know how you feel, I have recently been diagnosed with breast cancer (potentially may have spread as in lymph nodes as well, just waiting on scans) and I have 2 very young children, the thought of them having to grow up without me is torture, how old are your children? How did you find chemo? 

Thank you so much for replying. My boys are 11 and 4. I just told me eldest i have a lump and had to take special medicine which would make me tired and lose my hair and he was totally fine with it and hasnt asked many questions about it and my youngest doesnt have a clue whats going on. How old are your children? It terrible isn't it? I wouldn't even wish this on my worst enemy. I had 2 different types of chemotherapy. I had 3 round of EC every 3 weeks. I didn't have many side effects apart from being extremely tired for the first week and then feel back to normal until next course of chemotherapy. I then had 12 weekly paclitaxel with carboplatin every 3 weeks. I hardly had any side with that apart from the odd sore stomach. I didn't think I would get through it but I did. Whats the plans for your treatment?

Oh that must have been so hard telling your oldest, i know I would be in floods of tears telling them, that’s great that he took it so well. mine are too young to really notice, I have 2 girls, my oldest is 2 and my youngest is 6 weeks old. 

I have my first oncology appointment on Tuesday so I should learn more then but I think the plan is to shrink the lump (it’s big!) with chemo and then have a lumpectomy and I guess most likely more chemo after that. They made it sound so simple but I know things probably won’t go to plan and I’ll end up with a lot more treatment than they first said. 

that’s great that you haven’t had many side effects from the chemo, I’m just hoping I still have enough energy to look after my kids most of the time. Do you mind me asking how your hair is after the chemo?

Aww you must have your hands full with 2 little ones especially youngest being a tiny baby. You must have got a complete shock when you were diagnosed. I know I was, I thought the lump was caused by my little boy elbowing me by accident so I thought when I was being referred to the breast clinic to get it drained as I thought it was some kind of infection. My lump is big too at 7cm but hasn't shrunk much even with chemotherapy so thats why I need to have a single mascectomy. I had chemotherapy on a Friday so my husband was here over the weekend to look after boys while a slept for a few hrs. You are given steriods for a few days to prevent infection, give you an appetite etc so they keep you awake during the night which is a bit of a pain and luckily enough I was still able to look after the boys and cook, clean etc. Everyone reacts different to chemotherapy and there are so many different types depending on what type you have. I haven't completely lost all all my hair, probably lost bout 80%. I used the cold cap the first 5 treatments, it started to shed after the 3rd cycle and just got thinner and thinner so thought it was s waste of time to continue as you are in longer with the cold cap and the last cold cap i had gave me a 3 day migraine which wouldn't go away so just gave up. At first it was very thin and could get away with wearing a hat outside because it was winter but eventually I gave in and started wearing a wig. Frustrating thing is I haven't lost much hair on the rest of my body. Still kept my eye lashes and most of my eyebrows just a bit thin. Yeah the the oncologist are very straight to the point, they don't have any empathy. However the nurses in the chemotherapy ward are lovely and on your first visit, will go through everything you about what they are doing, side effects etc. You will be there for a number of hours depending on what type of chemotherapy you are having. You won't be able to have anyone with you due to covid. So I just took magazine, books and downloaded some films/stuff from netflix onto my tablet so that passed the time. 

Mummyto2boys

Best of luck with your PET CT Scan and your surgery and radiotherapy.  

Best wishes

Daisy53

Thank you so much

Thank you so much for sharing your experience of chemo, it really helps to make me feel a bit more prepared. I’m happy to hear you didn’t lose your eyebrows/eyelashes, for me I think that would be worse than losing my hair, people look so weird without eyebrows! I also get migraines so I might skip the cold cap, I hadn’t even thought that it may cause headaches. 
I thought my lump was caused by being pregnant or something to do with my breast milk coming in so I was very shocked too. And with kids it’s just so devastating to think about the future. My sister had breast cancer when she was young and she said just to focus on the next thing and not look to far ahead, so I guess that’s what I’m doing. I also find it really weird at home though as it feels like nothing has actually changed, do you feel like that? Like because we have kids to look after we are still running around doing the same things as before, then all of a sudden it’ll pop into my brain that I have cancer. 
do you have a date for your scan? I’m off to a CT scan tonight and my first oncology appointment tomorrow morning followed by a bone scan, scared but also weirdly excited! x

My scan 25th May, I am so scared I have hardly been sleeping worrying about it. Its the first thing I think about when I wake up. How did you get on with your scan and meeting oncologist? 

Yeah I know what you mean about being at home and having kids like nothing has changed, but sometimes I think its a good thing we have the kids to keep our minds off things. I still don't believe its happening to me and see all these other people going about their lives with not a care in the world. Definitely puts things into perspective and life is too short to worry about the small stuff. Your sister is right I try to take 1 day at a time and 1 treatment at a time. I know you are just at the beginning and you will probably feel like finishing chemotherapy is like a lifetime away but the weeks do go by fast. I felt like that 

Aww I know it’s easier said than done but try not to worry too much. I really hope things turn out well for you. 
I feel a bit better after seeing the oncologist, she went over the plan again and made me much more confident in what is actually going to happen. No results back from any of my scans though which is annoying!

I had a call yesterday and my start date for chemo is 3rd June! I’m weirdly excited about it! 

I know what you mean, when I go out and see other people walking around, everything feels so different now, like I wish I could be like them just dealing with a normal life. And all the things I’ve ever cried about before just seem so trivial now

Thats good you feel a bit better seeing consultant and wanting to start chemotherapy. Hope it all goes well for you