HER2+ and need some buddies

Hello @helsbels2 Isn’t this forum just the best? I know I keep saying it like a stuck record, but I honestly don’t know where I would be without it. It’s SO important to have somewhere to offload and get that support, especially if you are the backbone of your family and expected to be strong. That must be hard if strength and resilience is expected of you. Fortunately, in my case, my family and friends all know I am a neurotic melt who disintegrates emotionally under stress! They mop me up regularly but when it came to breast cancer, I needed other women who were going through it and I still do.

I am also ticking off this journey in stages. Also I had 2 lymph nodes involved and have got to have a mastectomy once my chemo is done. I had node clearance and while I didn’t enjoy the drain, it all healed up fine, my arm is ok, exercises have dealt with cording and all I have is a bit of residual numbness and a scar. It was only in January so that’s not bad. I have to have a mastectomy as my consultant couldn’t get clear margins but it was certainly worth a try and now I really don’t mind having surgeries done. I’ve had 4! It certainly takes the fear away. In fact, I absolutely love that pre-med they give you just before the anaesthetic. Feels great! I wish that my consultant had listened to me when I asked for a mastectomy but that’s another story altogether and I certainly think it is worth doing the lumpectomy. Please keep us posted on your progress. You’re a sister. Fab news that you don’t have the BRCA gene. I haven’t treated my body with the respect it is due up until November 9th 2023 when I abruptly changed my ways. A cancer diagnosis will do that to you! I like to think that it isn’t too late and I can change the future, even if I can do nothing about the past. Oh did I party…but then I don’t regret that. One shouldn’t. :smile:

@suedot Thanks for the Anna Bandanna recommendation. I really should change my profile pic. It’s one I’ve been using for internet profile pics for years and I was all dressed up for an 80th birthday. Day to day I look more like the frazzled cowboy hat woman. It’s always great to see what people actually look like and I invariably have it wrong. I have my heart shaped pillow from after my node clearance. It was in a gift bag with a lovely message from the women who had made them and been there before us. So touching. I love this community.

@naughty_boob Did I tell you I have had my gene testing approved? I’m getting it done soon based on family history. Scary but best to know. I will have a double mastectomy if it comes back as positive for BC genes. Also having some other cancer genes tested. Bit scary but nothing like scanxiety. Forewarned is forearmed.

@Nikks - No! NO! Woolly hair could not and must never be the next thing!!

Now…as I am going through cancer treatment and as it is not much fun and as I really should treat myself to make it more bearable, should I buy the beautiful brown Urban Outfitters Afghan coat I have just spotted on depop?

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@salbert
good news you also have the genetics approved. Like you if I’m positive for BRCA I will have a preventative mastectomy and ovaries/fallopian tubes removed (ovarian cancer is risk with BRCA). I believe there were several other genes they were testing for, not all mean preventative surgery.

I would rather know for me and my children. My husband’s family have prostate cancer and that can be linked to BRCA and would be a higher risk for my son. Unfortunately the only screening is an unreliable PSA blood test, but at least he would know the risk and it should be noted on his records. I think the screening would start earlier at 40 rather than 50. Breast cancer screening for my daughter is already 40 with my diagnosis now but genetics could bring that forward to 30 for yearly MRI and 35 mammograms.

:smiling_face_with_three_hearts:

@helsbels2 have you had an ultrasound during chemo. Hopefully it showed the cancer shrinking. My tumour was just over 3cm. I had same treatment as you and by the time I had surgery it had shrunk to nothing. Hopefully it will be the same for you. I have had lumpectomy and was lucky enough to get clear margins. I have a bit of a dimple where the lump was. I have two relatively large scars (about 1-2 inches) but they are slowly improving. I think if you can get reassurance from the ultrasound that the size is smaller that might help you feel confident about the margins. Good luck and let us know how you get on.

I am currently waiting for confirmation of follow-on treatment. I will be having radiotherapy and also more drugs! Hoping for fewer side effects as I still have some post chemo side effects which I am finding quite hard. Either way I am hoping to be through everything except the long-term five year treatments by the summer.

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@naughty_boob
Thanks for the oil tip,
Love the cost savings, especially at this time, its blooming expensive business this cancer lark!

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@frazzledmcsazza
So pleased to hear your results were good following your chemo. I really appreciate you sharing your journey, it sure gives me more confidence. At my ultrasound after chemo 3, they couldn’t even see the tumour; I was so made up !!! That’s why they switched me to a lumpectomy, I had initially been down for a mastectomy.
:blush:

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Ha. You’ve made me laugh; having visions of you asking for just one more surgery just for the meds ! Great to hear you were on top of your node clearance op, I’ll make sure I do my exercises to stand a good chance of a straight forward outcome. Good luck with your chemo, my advice would be don’t suffer alone with any symptoms use your chemo contact numbers to ask for help as they have something for every symptom.

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@naughty_boob I will also ask for my ovaries to be removed if I have the BRCA gene. Whatever I can do to beat cancer, I will do it! My Dad had prostate cancer and his mother died at 52 of lung cancer which could have been metastases. She was living in the wilds of Quebec and this was back in 1975 so the info is sketchy to say the least. I would absolutely rather know and feel fortunate to be given the genetic testing.

@helsbels2 You’re damn right, it’s pricey! I have decided to buy these bamboo blankets as my hot flushes are out of control now. I’m hot-cold-hot-cold-hot-cold. It’s tedious! I should actually take your advice and look up what I can do to alleviate those symptoms. However, to look on the bright side, at least I am doing my arm exercises, with such regular taking on and off of my jumper!

xx

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I’ve also got a genetics call next week to discuss testing. I have cancer in my family on my mum’s side (at least 2 with one breast cancer), plus now myself at age 39 and I have a 15 year old daughter so that’s why I want to know.

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Good on you @chellebelle. I think you are wise. How are you doing?

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Feeling much better now thanks Sal. Most of the side effects have passed but I do have a persistent cough at the moment so I’m hoping that doesn’t affects next Fridays chemo session x

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Omg yes BUY IT :heart_eyes: I actually treated myself each chemo round to a lovely outfit to lounge comfortably in , my wig was so nice like my own hair ,
we have to be kind to ourselves going through the difficult journey of life changing cancer :heart: but we can do it, so keep treating yourself hope your doing ok hun xxx

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@Nikks I am internet shopping like the world is coming to an end. I feel exactly as you do, in that we need to treat ourselves to get through this time. I am currently awaiting an Afghan coat, a fedora and a beaded cowboy hat. I might wear it round my mother’s house to make a silent point about hat quality. Designer beaded as opposed to white plastic!

@chellebelle I hope that cough does one soon. Fingers crossed we both get our chemos this week and that will be another one ticked for us both.

Despite saying we would only eat out once a day whilst campervanning over the weekend, once again it didn’t pan out that way. What with that plus all the Easter eggs, I need to show some self-restraint over the next few days. I’m seeing the plastic surgeon on 18th April and I still want to be in the situation whereby I don’t have enough fat for the DIEP Flap procedure. They seem to favour it over implants but I’m afraid I would rather go the tissue expander implant route.

Hope everyone had a restful Easter break.

Sal
x

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Thanks Sal. Yep fingers crossed. Having bloods tomorrow and they have said that they are going to reduce my next chemo by 20% so as long as bloods ok should be good for Friday!

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I hope you both get your chemo this week.

I had my chemotherapy reduced from the beginning (85%) due to my history of allergies and then 8 weeks in I had a temperature that didn’t want to reposed to antibiotics so they reduced it again (75%) They said it’s very common to reduce doses. One oncologist said they would love to give everyone a personalised dose but they aren’t there yet. They generally give more than is needed which gives them the leeway to reduce as needed. I think mine averaged out to 81%.

Take care :smiling_face_with_three_hearts:

4th and final EC today. I have a chemo outfit that my friends gave me that they said I could ritually burn at the end of all this. I told them there was no way I could ever burn Superdry clothing as it cost too much. However, just putting it on today made me realise that I can’t wait to burn it all! Just the sight of it makes me feel sick and anxious. I never thought I would have a Pavlov’s dogs response to leisure wear!

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Oh @salbert the humour you inject into us all is a real gift you have. :joy:

In all my 7 rounds of chemo, I didn’t get any infection. Now 4 months after finishing I seem to have the mother of all cold viruses with a cough I just can’t shake off. Strange how life is never quite the same #newme.

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Hi salbert , I can’t wait to see pics of said hats :heart_eyes: spoil yourself
Hope your doing well hun keep smiling xx

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Hi everyone,
I’m 36 and just been diagnosed with invasive ductile carcinoma which is HER2 +ve.
Got some more tests this week and will find out in 2 weeks the treatment plan.
I’m really struggling with the emotional side!
I’m struggling to eat/concentrate and feeling sick a lot, and I’m kicking myself because I haven’t even started treatment yet. If this is what I’m like now, what on earth will chemo be like!
After reading all your wonderful posts, I’ll be trying the guided meditation etc, but I was wondering if anyone had experience of going to the GP for anti anxiety meds or anything?
I don’t want to be taking meds really but what to be strong/healthy enough for whatever is next, and not wanting to eat isn’t helping that!
I’ve already found so much comfort from you all, knowing that you’re not alone, so thank you.
It’s a whole new world!
Hannah x

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@hhad I had to answer you immediately because I want to wrap my arms around you and tell you that I know exactly what you’re going through. We all do. It’s absolutely terrifying but you will get through it like we all have done and are doing.

36 is so young and it’s really unfair. I am on anti-anxiety medication and sleeping pills actually. To be honest, I don’t know how I would have got through the last few months without them. My doctor has been very understanding and says we will look at them every three months but to get through this time first. The anti anxiety which is also an anti depressant is called mirtazapine. The sleeping pill is called zopiclone, but they don’t like to give that out, it’s just that I have a long-term history of insomnia.

I say that you should do whatever it takes to get you through. These things are all there to help us so don’t feel that you should have to stay strong when there is medication that will help you. I think we would all say that exercise and meditation and any of the other mindful activities are also a great help but I think it’s a combination of everything that held me together through the tough months. And, as you have probably read, the tough months are the bit that you are in right now. Once you are in treatment, although it isn’t pleasant, you don’t have the anxiety anymore of the diagnosis time.

I also am doing 12 counselling sessions that I got through BUPA. That has also helped me a lot in processing my thoughts.

@naughty_boob Has some good information on accessing support. In fact, the breast cancer nurses on this website can be phoned and are a real help during moments of panic. I phoned them twice and they were great. Your response is 100% normal, so please keep talking to us. I cannot imagine the last few months without these amazing women.

My favourite sentence that my breast cancer nurse over at Royal Marsden said to me, was that it is important to remember that with all the advances in breast cancer treatment, we now live in a day and age when the vast majority of breast cancers are curable.

@suedot We have to grab those laughs wherever we can, don’t we!

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@Nikks I completely forgot that hats come in different sizes. The fedora has arrived and is absolutely lovely. The problem is that it balances on my head and waggles around, thereby leading me to believe that it doesn’t fit! As I am suffering the after effects of my fourth EC, I have hung it up and will return to this issue when I’m feeling a bit better. I simply cannot be arsed to think about it at the moment. At the very least, it will be nice to look at hanging up on a hook in my hallway! I am having my wig fitting on Thursday, so if by some miracle it fits over my wig, then I will certainly be posting a picture looking smug! Xx

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