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Sharing my experience

2 REPLIES 2
Evie-S
Community Champion

Re: Sharing my experience

@Impatience - what a very thoughtful and helpful post. I wish you all the best going forward, and lots of hugs. Evie xx

jules_n
Member

Re: Sharing my experience

Thanks so much for taking the time to write this @Impatience It’s an excellent balanced review 😀

I’m still going through chemo, and it was good to read that you’ve recovered and Letrozole hasn’t been too awful for you. 

Best wishes to you for the future XX

 

Impatience
Member

Sharing my experience

I have just had my annual check up following single mastectomy, chemotherapy and radiotherapy during 2021. I thought I would share some of the things I found useful and/or things I worried about/ wish I had known about at the time. 

DIAGNOSIS  - it is true that although there is ‘someone like you’ out there going through the same worry etc a diagnosis is unique. I was amazed at how complex BC is and how many different factors there are. I wasted time trying to find someone who was exactly like me (IBC/DCIS grade 2, E+, lymph node + x 14 stage 3c). I feel that the time would have been better spent on understanding/gaining knowledge on my own diagnosis.

The diagnosis can change. My 3cm tumour following biopsy was reduced to 2.8cm after surgery. My ‘little cancer in the lymph nodes’ became 14/22 positive nodes. 

SURGERY - my arm pit had a BO odour all of its own. I worried for weeks that this wouldn’t go but it did. Be patient with your recovery time. My first look in the mirror shocked me to the core. I looked like a car crash victim but 6 weeks later I was amazed at how well the scar and surrounding skin looked. Once again unnecessary worrying.  I wish I hadn’t wasted so much money on trying to find a bra  I was 36c prior to surgery but after my consultation with the bra service I was told I was actually a 38aa  In the end I now wear a crop top style of bra which is comfortable for me  Take your time in finding what suits you  

CHEMO - this was nothing like I thought it would be. I had grown up thinking chemo was the worst thing ever with images of vomiting/ghost like emaciation BUT it was nothing like this. I was never sick, I didn’t have any rashes, pain, mouth ulcers, numbness in hands and feet. In fact from the long list of possible side effects I only experienced loss of hair ( it grew back 3 months after treatment), some constipation (probably from the steroids) which I managed with diet, some fatigue in the first week following each chemo session and I didn’t lose my nails. I did however have a drop in neutrophils ( didn’t know these existed). They are part of the immune system. Basically the chemo can knock them out to a low level that you need hospital treatment. However this was not a bad experience. I was given my own room/bathroom as it makes you susceptible to infection and it caused no pain or illness. It was something that was going on within my body but gave me no symptoms other than a raised temperature (the flag). Basically for me the hardest part of chemo was the isolation. I chose to stay home for 18 weeks and not mix (I did go out for a walk/drives) as I didn’t want to pick up covid or any other bugs that might have delayed my treatment. I also ate very well although my appetite was slightly diminished. It’s worth considering what food is good for you during chemo. 

RADIO - the hardest part of this was the daily trip. I had 15 sessions. My skin became red and itchy on day 12. Prior to that I had no skin effects. I moisturised 3 x daily, and when the skin became red I used flamigel given to me by the nurses. The itching was compatible to having shingles. I learnt to pat my skin and practiced mindfulness until the urge to scratch passed. I also got a headache and felt slightly nauseous after each session. I wasn’t told this could be a symptom and I worried unnecessarily that my cancer may have returned. As soon as the radiotherapy ended so did those symptoms. 

LETROZOLE - Like with chemo the list of possible  side effects filled me with dread. I have been on this drug for 7 months and I haven’t had one symptom. Yes I sometimes feel a slight flush but is that a result of a hot day or after a hot meal and yes I’ve had the odd sleepless night but again other factors may have caused this. I take the drug just before I go to sleep. 

LYMPHOEDEMA - having all 3 levels of my axillary nodes removed I knew I was at high risk of developing this. I have just been diagnosed with it albeit mild and manageable. I’m pleased that I was warned about this as since day one I’ve made sure I’ve taken advice regarding on how to keep this to a minimum and manage it. It isn’t painful and the only difference in my arm is the upper arm is half an inch bigger than my non BC arm. I have been lucky to be able to access a fantastic physio for women’s health. If you don’t get offered this then ask for a referral before you start any treatment/surgery. 

I hope the above helps. Imp x