So many questions

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I was diagnosed with HER2 positive breast cancer Stage 3+ in early spring. I commenced my chemo journey and used the cold cap which was very successful so if anybody wants to ask about this I’m happy to share my experience. Unfortunately the chemo wasn’t quite as successful and the decision has been made that I need a mastectomy and full lymph node clearance then another 14 sessions of targeted therapy of Kadcyla which contains a chemo drug. The operation is booked in for mid October. My head is completely scrambled with all the information I was given regarding the op and the ongoing treatment. I just feel that I’ve wasted the summer being very ill on chemo when it’s barely had any effect and I can’t seem to get away from this. I’m a very positive person and am annoying myself with this attitude. I’m also quite apprehensive as I mostly live alone with two very energetic dogs that need lots of walking (my children are at University) and I am worried how I will cope after the op. Can anybody share their experience of how debilitating (or not) this op might be?

Missy219 29 days ago

I’m Now 37 but 36 at the time and had a masectomy with immediate reconstruction however this failed so just masectomy in the end

chemo worked a little bit for me but not much as it started growing again so like you, I felt deflated and what was the point etc.

chemo will hopefully of killed anything which was dorment.

the surgery is a breeze compared to chemo. It’s the easy part. In a fashion. I had to rest a lot cos I had DIEP but if it’s just a straight forward masectomy - you’ll be in and out. You’ll be back to normal things in a few days / just got to be wary about wounds and that.

I had radiotherapy after and it burnt the skin in that area like mad so ended up having a second degree burn however the nurses sorted and after 2 months it was okay.
It only affected me having showers etc other then that I could live every day.

I still went to work etc with the burn and it was okay.

I had surgery in January and was back at work in April after radio. Consultant wouldn’t allow back until after radio and m glad he didn’t.

the fatigue is worse…

good luck. You’ll be fine!!!xx

latchbrook 29 days ago

Hi J0T740d61 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community, and I was diagnosed with TNBC in April 2022.

I'm sorry to read that you need further treatment and thanks very much for offering to share your experiences.

The online community is divided into different support groups so I'm going to recommend that you join the breast cancer group as you'll then connect directly with others who have the same type of cancer as you.

To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

Wishing you all the best

"Never regret a day in your life, good days give you happiness, bad days give you experience"

Hanhar82e2c3e4 1 day ago

Hi there

I really hope you are recovering well from your surgery.

I too was diagnosed with HER2 positive. I had a bilateral mastectomy with immediate reconstruction in September. I recovered well and am now ready to start 12 weeks of Paclitaxel.

I'm petrified of losing my hair and desperately wanted to try the cold cap, but my hospital don’t offer that service. I’m feeling really deflated and wondering if there is a way of hiring the cold caps etc.

I’d really like to hear about your experience of using one if you are happy to share.

Thank you

J0T740d61 1 day ago in reply to Hanhar82e2c3e4

Sorry to hear about your diagnosis, and that your hospital does not offer the cold cap. I had my treatment at Christie’s and the cold cap was offered by them so unfortunately I don’t know whether it is possible to hire them. However, my experience with the cold cap was, you have to have it on for 30 minutes before the main ‘taxel ’ treatment (mine was docetaxel), during and then 60 minutes after the treatment (this never bothered me as I had a second treatment of carboplatin so it only lengthened the treatment a little). In terms of pain, I took paracetamol just before and found the first 10 minutes as your head freezes quite painful but it is bearable if you can get something to distract you. After that it never really bothered me other than I felt cold so I had a blanket on me during the treatment (3 hours). In terms of success, I have kept all my hair (no bald patches) but you do still lose hair during the treatment and have to be prepared for that. The less you handle your hair the better as the roots are weak. If you go on to use the cold cap let me know and I can give you more detail on that. Overall though, I do not look like I have lost hair (I just know it’s much thinner than it was). Good luck with the treatment and if you do get a way of using the cold cap please get in touch again if you have more questions.