BC her2 positive 35 years old

Hi 35yowithBC

Welcome to the forum, I'm Daisy53 one of the Community Champions on this forum.  While I haven't had the experience you are looking for I noticed that you haven't had any answers yet so I thought I'd reply to you to welcome you to the Community.  Hopefully someone will be along to share their experience with you soon.

Wishing you the best of luck with your treatment.

Best wishes

Daisy53

Hey, I haven’t got any advice or positive stories for you but I just wanted to say that I have the same type as you with potential spread in the auxilla and my treatment is going to be the same as yours too. I’m 39

I would love also to hear some positive stories. I’m so scared.

Here if you want to chat 

Hi. I was diagnosed with her2+ breast cancer dcis invasive in sept 23. I started chemo in nov 23 and had 6 rounds like you. It was brutal I’m not going to lie, really horrible but I got through it and then 2 ops as first one had issues with healing. 
4 weeks radiotherapy mon-fri with extra boost for last 5 days. That was easy honestly. Just knackered going to hospital every day. 
now I’m still doing the herceptin injections

all my scans show no sign of cancer. I think although it’s pretty aggressive the treatment is harsh but works. I have a friend at work who had exactly the same, same treatment everything 15 years ago and she’s still cancer free today. That’s going to be us, you and me kicking cancers backside. You can do it.

I wish you full recovery. I feel sad how it is spreading in younger generations. Especially that my genetic test results came back negative (no related gene affected). Hopefully we will make it through. 

This gave me hope. I hope we will make it and stay cancer free forever. 

I am going to have my second round of chemo soon. During the first, for couple of days i had really bad side effects related to my stomach/bowl. Extreme pain. Am i wondering if during the second and remaining rounds, i will have the same effects or will it ease going forward. If u can please share ur experience, id be thankful.

Also, my genetic test results came back negative (no related gene affected). Am wondering about the causes!! Did u have the chance to chat with ur specialist around the causes for this type in specific?

Thank you :) 

Hi,

I am now nearly 4 years out from a diagnosis of her 2 pos, hormone neg breast cancer with x1 lymph node pos. I had surgery first then TCHP and 15 radios. I was 54 when I was diagnosed - no family history, no lump, it was found on routine mammogram. I felt the 1st cycle of treatment was the worst, I was told they give a loading dose so a slightly bigger dose to get it into your system. Also fear of the unknown plays a big part.

I was told that hormone negative cancers respond very well to chemo and then we have the very effective targeted therapies for the her2. If they find there are any active cancer cells following surgery there is another targeted therapy they can give you and more treatments coming down the line all the time. There is also a Vaccine for Her2 breast cancer going through trials at the moment.

There is an American Her2 group on face book and there are ladies on there that have been stage 4 for many years, the targeted therapies keeping things at bay.

Its hard to see the light at the end of the tunnel when your in the early stages of treatment but there are lots of us on the other side of treatment getting back on with our lives and hopefully that will be you soon.

Take care

Gillie x

Hi

I’m not much further ahead than you. Done 6 weeks of a 12 week chemo programme and the Trastzumab will continue for the whole year

I too was worried about being HER2+, but from what I’ve read and the encouragement I’ve been given by my surgeon, although it can be quite an active cancer, it responds extremely well to the targeted drugs. My surgeon told me the introduction of Trastuzab/Herceptin was a complete game changer which has transformed treatment of this particular type of BC

Good luck. It’s not always easy, but the good news is we are being treated. Eat well, drink lots of water, and get out for a walk every day if you can (possibly easier said than done with 2 youngsters)

As far as the reaction to the drugs, everyone is a different I believe but I had problems with my stomach and bowels on each round and tried lots of different drugs to try and manage those side effects with varying success. The worst issue I had was that my blood pressure would drop between days 7 and 10 each cycle and I would have a lot of dizziness and fainting. I would be admitted back in to hospital and they would give me iv antibiotics and fluids and anti sickness drugs and after 24 hours things would normalise and I’d go home. First time I was terrified but after a couple of cycles my oncologist said that they thought I was just extremely sensitive to the steroids but I had to have them so I just kept my hospital bag packed and ready. It felt horrible at the time but my friend also had the same experience so I stopped worrying and accepted it might happen each cycle for me which it did. But they told me most people don’t have that happen. Which didn’t really help honestly.  

the side effects from the chemo are awful and I did lose a lot of weight but you can get through it  drink as much water as you can, and get out of the house just for a short walk it really does help  even if it’s just to the end of the road and back  

it feels like a long time when your in it but you can do it  we are all cheering you on  

do you have a port for your iv to go in, I was so glad to have that it made getting the drugs in easier  

have you got 5 more rounds left?

you are ticking them off already?

Remember it’s crap now but you’re beating cancer you are going to get through this  

sending you the biggest hug

1. Hi 35yowithBC 

I’m 27, also her 2+ and hormone negative. I was also diagnosed December 2024 and started chemo 3rd Feb. I wanted the exact same reassurances as you, every time I tried to Google it, it would just show me posts about reoccurrence which scared me too.

I found a woman on instagram called the_boob_battle who was her2+ and stage 3. She’s been clear for 3 years now I think, so may be a helpful reassurance to you. She’s also in her early 30s I think. 
I also read about an American 26 year old woman diagnosed with stage 4 metastatic her2+ breast cancer who has lived with it for 19 years. Link: https://www.rogelcancercenter.org/living-with-cancer/survivorship/living-well-metastatic-breast-cancer#:~:text=Heather%20Jose%20and%20her%20daughter,Sofia%20Merajver%2C%20M.D.%2C%20Ph.

My partner reminded me too that those women that had her2+ breast cancer 10, 20, 30 years ago and haven’t had recurrence are out living their lives, they’re not posting on cancer forums so much. 

I also went to my local Maggies centre and one of the nurses there said she’s seen plenty of people have complete response to treatment/surgery and never seen them back again. 

Although Her2+ is aggressive, the positive is the targeted therapies (herceptin) which has increased disease free survival massively. 

Those are just a couple things that helped reassure me a little, sorry it’s not a personal story that you were looking for but I hope something in there comforts you a little.

Cancer is really scary and it feels unfair to be thinking about how long we’ll survive when we’re so young, but none of us can predict the future and we just have to have hope.

Sending lots of love your way x x

Hi 35yowithBC,

I was diagnosed with her2neg erpostitve prpositive, grade 3, May last year. Had op chemo radiotherapy and now on Letrozole for 5 years. With 6monthly bone infusions. 

However my friend had same diagnosis as you she was her2+ hormones neg, grade 3. She had chemo, op, reconstructive surgery and radiotherapy then herceptin. That was 14 years ago. She has not had a reoccurrence and is happily living her life. 

Like your husband said she is no longer on the forum as it was a long time ago.

Good luck with your journey. Sending hugs xx