HER2+ and need some buddies

Thanks @naughty_boob for your wisdom as always. Yes, the latest research and evidence will deffo help me out with it all. It feels like the mastectomy was curative in many aspects I was just surprised that MDT did not already give me an indication on what’s next. 5 months in, 3 surgeries and I am still unsure about further treatment apart from Tamoxifen x Th

1 Like

Talking of joint stiffness @woody2 and @kartoffel, I went to a Madness Tribute Night at my local pub on Saturday and danced the whole time. Oh my word….. it would seem I can’t do that anymore without paying a price. My knees! My Achilles tendons! My arms! My shoulders! Thank goodness for Ibuprofen. This never used to happen. I barely drank anything but felt like I had been utterly poisoned and had to crawl to bed. I’m no spring chicken anymore but I wonder how much of this is age, post menopause, treatment after-effects or a combo of it all. I am taking turmeric and an Omega 3-6-9 supplement and I wonder how I’d feel if I didn’t! Hats off to those of you who run.

@boobitis I’m so happy to hear your good news. I really am. That’s a tough call to have to decide with your oncologist whether to do chemo or not. Like the others have said, ask all the questions you can so that you feel as clued up as possible. I do know of another woman who was in the same situation but was told that chemo would improve her outcome by just 1% so she didn’t go ahead with it.

Karaoke was so much fun @carrie5 K-Pop Demon Hunters seems to be the order of the day. Yep, no idea either but it was joyous to watch.

X

2 Likes

I heard Dr Liz O’Riordan talking to a man on her podcast (small teaser on Instagram) and she said chemo ages you about 10 years. I thought, yes I agree with that and why hasn’t anyone else mentioned this. I will need to look up the whole podcast and have a listen. Add to that aromatase inhibitors for me and that’s probably another 10 years or more on the joints.

No wonder you ached @salbert

:smiling_face_with_three_hearts:

2 Likes

You are an inspiration @salbert even with the Ibuprofen you doing so many grooving!!! well done:)

Thanks for kind words. I will ask all I can and try to make that informed choice. I am on another waiting stretch, this time for the oncologist call so I am drafting my questions. From what I research online a lot of times they do not recommend chemo for my size but then there will be ones willing to unlock Herceptin. Well I just need to continue to trust them x but I am happy there were no more surprises, no invasive, no DCIS💪

3 Likes

Sorry I haven’t caught up yet but hoped someone had gone through something similar and may sympathise. Just got a call that my genetics are back tomorrow and I am meeting them tomorrow. Some genes/outcomes in the suite may mean that not only I but also my little one is predisposed to cancer.

Now I am worrying and my partner’s worrying. Like I know I can’t physically do anything to change the outcome but just hoping and praying all is well. Also knowledge is power and we can watch out for anything! But spiralling bad right now.

4 Likes

@naughty_boob I think Liz O’Riordan may be right there. I found an article on Bloomberg News quite by chance the other night as my son is having to make a documentary for his course on a media franchise with a fandom. He has to do interviews with fans and is obviously doing Eurovision as he has an interview subject right there at home and access to all my Eurovision friends. We googled ‘Stereotypical Eurovision fans’ and up popped a pic of me and my cousin in Liverpool which made me laugh out loud. My cousin is in the sequinned dress staring straight at the camera and I am just behind her with a flag in each hand and sunglasses on. My thought, immediately after a happy surprise, was shock at how much I’ve aged in 2 and a half years and that in that pic I had breast cancer but didn’t know it. Just 6 months of blissful ignorance left at that point. I’ve bailed on tonight’s Dance Fitness class followed by drinks as I’m too tired and it’s a Tuesday which is fine if you don’t have to be at work the next morning and haven’t just had a late Monday night courtesy of your elderly parents. I could feel myself being all disgruntled that I had to go out tonight then remembered my promise to myself not to run myself ragged for other people so I sent a message pulling out. Go me!!

@boobitis do let us know what your oncologist says and which path you choose. It all helps for when other ladies find themselves in your situation and thanks for sharing.

Dearest @lmack95 I am sorry I didn’t see your message until today and it may be that you’ve already had your meeting. I also had genetics testing, as have a fair few women on here. Mine came back as negative for the BRCA gene and a couple of others for which they tested. The way I see it (and saw it before my result) is that although I obviously wanted a negative result, I would rather know and be able to take preventative action if I did have a genetic predisposition. I have also met women who have got the gene and they find peace with it in the knowledge that they are ok right now and are being watched. Please let us know the outcome and I hope you are ok.

3 Likes

I would think nothing more than @salbert is the stereotypical Eurovision fan :rofl::rofl::rofl:

@lmack95 I also had genetic testing and was negative to all that they know about. For me this meant no more surgery but having two separate tumours at the same time, my daughter gets annual screening from 40. I hope everything goes well at your appointment.

:smiling_face_with_three_hearts:

2 Likes

@lmack95 I also had the genetic testing after the diagnosis and turned to be negative for all those genes. My consultant was lovely and it was reassuring to get tested. I as @salbert agree that it’s best to know and then take steps to prevent but my consultant says genetic cancer is really happening much more rarely than we think. I had my testing because my mum had idc her2 plus cancer 10 years ago and I remember how it shook me that if I find out about the gene it will have some consequences for my son and my brother and his daughters. But all came back clear. Sending hugs for the waiting stretch, one step at the time x

@salbert I am in Liverpool hahaha was great to see you in my gorgeous city omg:) any time you and your friends are around to celebrate sth Eurovision related please let me know:) I just see the fans not stereotypical fans hahahahhahaha. I will let you know about the outcome, so far I cannot believe I am waiting again. They said give it till 19th December for the oncology to contact you omg… so far no phone call let’s see…

2 Likes

Thank you all! It’s come back all clear for me too​:tada::tada::tada::tada: it’s just such a relief !!! Thank you all for your reassuring words!

7 Likes

Great news.:smiling_face_with_three_hearts:

1 Like

Fantastic news @lmack95 :confetti_ball::confetti_ball::confetti_ball:

2 Likes

That’s good news @lmack95. I still haven’t heard about genetic results yet, I got told it could take between 8-12 weeks and I’m on week 8 since diagnosis.

I’ve just gone through my egg retrieval this morning, so glad that’s over with but not sure how successful it is going to be!

I’ll be starting TCHP chemo on 24th December so at least I have a week or so downtime before the next step.

5 Likes

If I’m up in Liverpool again I will give you a shout @boobitis Your city did an incredible job back in 2023. What happy, happy memories I have of that time. Hope your oncologist calls soon. It’s a horrible time of year to have it hanging over your head. I well remember Christmas 2023 being bloody awful and utterly ruined by breast cancer.

@lmack95 Yeeeeahhhhhh!!! :partying_face: Wonderful news. :grinning_face:

@bally8 Hopefully you won’t need to wait much longer for results either. Great that the egg retrieval is done and that you can relax before starting chemo on Christmas Eve. Some Christmas present! Just remember that you are doing it so that you get another 50 Christmases.

XX

2 Likes

Well done on the egg retrieval, they told me roughly how many when I woke up but then confirmed after so hopefully not too long to wait. I think if you’re doing embryos its different though!

Hope you get to chill a bit for a week. Plan some.nice things, I was decorating for Christmas yesterday! Xx

2 Likes

Also we’ll be both getting chemo on Christmas Eve, the joys! Was thinking I may take non alcoholic mulled wine in!

3 Likes

me with my very fetching cold cap today!

4 Likes

Yes the told me how many but only my left ovary was accessible so hopefully the eggs they got from the left are good ones! They’ll let me know next week how many are viable embryos.

Aw that makes me feel better, I guess there will be quite a lot of people getting chemo on Christmas eve. Hopefully there’s some festive cheer going around :smiling_face: I’m sure the mulled wine will be nice to have to start some Christmas celebrations.

2 Likes

I always think oncology wards are so so positive so hopefully people are cheerful!

2 Likes

Roughly where you based maybe well see eachother🤣 (highly unlikely but you never know)

1 Like

@lmack95 well done on the cold cap and very pleased you got good news, hang in there those waiting, as @salbert says an extra crappy time of year to be waiting on results for anything. I did it last year. Just in case chemo goes for your taste buds maybe take in some different seasonal snacks and drinks. For me savoury went altogether and anything like no alcohol wine, even fruit juice just tasted metallic or sour. I think I have aversified myself to tuna for ever! Gingerbread biscuit might work? You can’t totally mis out on the seasonal treats though. Went for my first annual mammogram yesterday, 4-6 week wait for results. Very best to everyone.

6 Likes