HER2+ and need some buddies

Afternoon!

Talking of the wonderful Liz O’Riordan, she posted a video recently where she reminds us that it’s ok not to feel ok and I thought a) how wonderful she is to be so honest with us all and b) that I must share it here.

Also, following on with the dogs theme, I cannot recommend it highly enough. The joy that our little girl has brought us since we got her from a rescue in September, just cannot be underestimated. She fills me with endorphins, not just because I have so much love for her, but also because she ensures I exercise every day. We managed one month between the cat dying and getting another animal. They enrich your life so much.

@fimac1 I hope this next week passes quickly for you. I also had the prolonged wait this time last year and to say it ruins Christmas is something of an understatement. Keep us posted.

Hi @scaredmum1 That sounds scary. My heart function has been affected by the Phesgo so they put me on Candesartan which has sorted it out. I will come off it after I finish Phesgo in April when I am told my heart will recover. Also when I was on chemo, I became anaemic which made my heart race and pound just walking upstairs. I was given an iron transfusion for that which sorted that out. Hopefully they can give you some drugs to mitigate whatever is causing your heart to race.

@bearcat1 I also have IBS as a nice leftover gift from treatment. I think it takes time to recover from all that we have been through. @suedot and @arty1 have posted about this before. Definitely speak to your team though.

Ooh, I get to finish work now.

Happy Friday all!

Salbert
xx

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Thanks for responding, I do keep telling myself that I’m still in the thick of it really.
I’ve never had much patience with myself, that’s a big work in progress at the minute!
Take Care x

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This is my first post on the forums and I have used these chats for a whole year now to help ease myself so much over the past year. You all rock!!!

Today I had my first annual mammogram and ultrasound (a year tomorrow I was diagnosed) which come back clear straight from the consultant radiotherapist mouth - but I am yet to see the breast consultant for a discussion on the results and what next. Does anyone know if the scans are 6 monthly or annually?

I have some concerns over a small hard lump that come up on my scalp back during chemo last summer. I flagged it and was told it was cyst. I’ve had a second opinion but never a scan or anything to confirm. The area feels tender and the skin sometimes feels tight.

I am a fellow HER + (hormone negative)

I had two tumours (12/19mm) in my left breast both invasive, plus another tumour but DCIS (49mm) and one lymph node involved. I had a complete response to my chemo (4 x EC/9 x Pax), a mastectomy and 15 days of radiotherapy. I’m on Phesgo until June this year. Every appointment I’ve had barring the initial diagnosis has been positive but I really struggle with the what ifs. I don’t work, I had to give up my training as a midwife to get through my treatment, so I have lots of time on my hands,

Just playing on mind so much and every little ache or pain my thoughts go wild. The lump on my head is going to be checked. I’ve contacted my oncologist and raised my concerns again, I’d like to ask for a CT PET scan but I don’t know if that’s going to be agreed. Will this uneasy feeling ever pass. It’s been a turbulent year (as you will all know) and my mind and body has been through so much but I’m also so scared still.

Thank you all xx

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Well hello there @sm2024 and I’m really glad you’ve come to say hi. I love to hear that this thread has been helping people and am even happier when they introduce themselves so a big welcome to you.

So…here’s the thing. I have a hard lump just at the edge of my eyebrow and a soft lump on the front of my left shin. About a year ago, when I was in the thick of it all, I visited my GP (a blubbering wreck at the time) and got him to check these lumps whilst I wailed at him “Is this cancer? What about this? Is this cancer?” He assured me these areas were not cancerous and in the past year they have not grown at all. Also, I guess the head scan would have flagged it up if the eyebrow one had been cancerous.

What I am trying to say in a round about way is that it has happened to us. We got told we had cancer so none of us are in denial about it which is why we are going to have that worry at the back of our minds. I think it is important to acknowledge it, get it checked out and keep telling ourselves that at least we are on our health teams radars. I’ve been told if I have any concerns then to just go straight back to my consultant and Advanced Nurse Practitioner who are both lovely women. They fill me with confidence which helps hugely with the fear.

Every time I think of the what if’s, I flip it around and tell myself that I’ve had a thorough MOT and am going to do everything in my power to give myself the best chance. I’m going to stay a healthy weight, drink very little alcohol, get enough sleep, exercise and keep stress to a minimum. I look around me at people who still take their health for granted (just like I did) and I figure that we are in a better position than they are in many ways. We get the book thrown at our type of cancer and now we can keep an eagle eye out for the tiniest indication that something is wrong. A few of my good friends are heart attacks waiting to happen but not doing anything about it, whereas we are one jump ahead. That’s the way I see it anyway. Optimistic or still in denial?!! I’m not sure, but I actually think I am probably healthier now than I have been in years.

If you are ever worried, then jump on here, say what you’re worried about and somebody or other will help put your mind straight. They’ve been doing it for me for over a year now so I know it works!!

Let us know re your mammogram results (although sounding positive so far) and about the lump on your scalp. It sounds like your medical team think it’s just a cyst but it will of course be good to be told that for definite.

Salbert
xx

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@salbert you are so kind to respond so quickly and I feel like I just blurted it all out in one big mess on here so thank you for taking your time to read and respond. I am very grateful.

I have found at times it very difficult to trust the process but I have really taken on board what you have written.

I worry that these thoughts will never go away but I completely agree with you on our own insight to health because I am the healthiest I’ve ever been. I did sadly have some news this week that a friends husband died of a heart attack after going into hospital with flu, which feels so sudden and was such a huge shock. It’s shaken us all. Maybe it’s why I’m having a huge wobble.

Thank you again for being so kind and respectful. I will make sure I contribute more often. Night, night xx

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Forgot to take mirtazepine so awake at the crack of dawn. Nipped to the loo as you do, just in case you need one! It’s flipping freezing out of the bedcovers!

@salbert I can visualise you on that beach sharing my good news with the elements, your husband, the dog and those fishermen! Thank you :smiling_face:

I’ve been reading the thread since my last post. Lots of new people to welcome and trials, tribulations and much useful information and positivity shared. It reads like a book. Love it and love the glimpses into peoples lives.

I’ve had a busy week. Monday I partially retired which meant I only had to work for 3 days. My working week ended on Wednesday. Bloody marvellous! Tuesday marked the start of my 12th year in my current role and the completion of 36 years in my profession. What an achievement even though I say it myself. Aiming for my 40 years service badge to keep with my Brownie badges!

Had a flurry of telephone calls about me. Never been so popular! Also met up with two close friends. One whose Mum has been in this club in much later life than me and the other who trod the path during Covid. It was just lovely to catch up with them both and made me realise how much work has taken up my life and how much time I’ll have to catch up with friends with working part time and being on sick leave…

I’m having my PICC line inserted next Thursday and chemo etc starts next Friday, the 9th anniversary of my lovely Mums death. I reckon she played a part in choosing the 17th. It is the start of me tackling ‘it’ head on with the help of the toxic drugs, our brilliant NHS, those that serve in it and the love and support from family and friends. I’m feeling invincible!

Yesterday I was called to see the surgeon. I’ve joined the 5% club with @naughty_boob
After jesting about a ‘Tale of Two Titties’ my right one has its own starring role in my story. Thank goodness the MDT decided that although small, those two naughty areas shining their lights on the MRI stage warranted a closer look. Feeling grateful for MRI guided biopsies and the radiologist locating the areas with his grid references. The results confirmed that I have DCIS in the right one. Now I have till spring to weigh up my options. Double mastectomy or one mastectomy and excision of the affected areas of t’other. My immediate thought was they can both go. Don’t want them or need them. Whilst he said outcome was the same my head is telling me that if it all goes there will be less likelihood of recurrence as there will be less breast tissue for it to recur in. If I opted for a reconstruction will I potentially look more symmetrical if they are done at the same time? If I have a single mastectomy and reconstruction will I have an apple and a pear with my maturing body? :roll_eyes:

Weird thing is I didn’t feel any emotion about the news. Perhaps a sense of relief as deep down as it was what I had expected because why wouldn’t it be me that has it in both? I never do things by half! Though saying that I do get called ‘half job hill’ at home as I hardly ever complete anything as I’m doing three things at once, which reminds me I need to finish of painting a chimney breast which I started before the biopsies and didn’t finish on account if sore boob. Hmmmm… now why is it called a chimney breast? See, I’ve gone of on a tangent again… can’t stay on task! Does anyone know why it’s called a chimney breast!

So the news meant that for the fourth time on a Friday I’ve had to tell the kids. They were both nonplussed and said get rid of it at the same time as the other one. Think we are all getting accustomed to the bad news and are trying to look at it positively in the fact that ‘it’s’ been found and it’s being dealt with.

On a lighter note I had a delivery of a Limbo in the post. I had to chuckle as it was addressed to Mrs Jelly!

Enough of my wittering.

Happy Saturday. Xxx

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How did your dcis respond to treatmeant i have a similar diagnosis and have been told that it wont treat the dcis (10cm) it will only get rid of the idc (12mm possibly )im on cycle 3/6. I hard a hardened area after biopsies and felt it change after the first round but not so much now.

I got a ct scan but im sure it only done my spine to my pelivis area i would only like a brain scan im paranoid and want to be checked everywhere.

Hopefully you can get one and pit your mind at ease :heart: xx

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Wow , a lot to catch up on , I had cycle 3 on Thursday which wooed me out unusually as I’m usually a bit wired when I come home but I yesterdays steroids wired me up sufficiently!
My friend wanted to visit yesterday so after checking and was lurgy free etc she popped over , no hugs and sat in the other side of the living room but after isolating from people it was a tonic to see a human that wasn’t a medical professional , postie or Amazon delivery driver !

I felt my MH lift and my internal happy meter went up … it was lovely , I’m trying not to worry that she might have lurgy as my 14 year old is coughing all over the house so it’s a miracle if I don’t get anything !

@scaredmum1 how did your scan go ? You just be feeling very worried … I will tell you that with cycle 1 I had a reaction to the herceptin and about a week after my cycle I started to feel breathless and if I exerted myself I felt like I’d climbed Snowdon , I too have existing heart issues so it’s a worry although I was reassured my heart was pumping well before I started treatment , I also have SVT but I’m not on any medication as my cardiologist wanted to watch and wait due to my pre treatment very low blood pressure … My chemo cycle 2 was delayed a week and they did realise that I was horribly anaemic and I had an iron infusion that day .

Since the. I’ve felt better gradually , cycle 2 was given a week later and I recovered much better after it as they also reduced the dose although the breathlessness and palpitations kick in if I try to do anything too strenuous like cleaning etc …

My oncologist is going to arrange another heart scan just in case but I am on paclitaxel as like @naughty_boob they didn’t want to hit me with anything too hard …

It’s not unusual to react to taxels after a second infusion and it may be they need to with consider a dose reduction or change of meds after your scan . All chemo is cardio toxic and obviously herceptin has risks but my consultant was happy for me to have both and said even his patients with quite poorly hearts have actually managed ok in chemo and he has patients with severe heart issues on herceptin … so I hope that helps a bit ?
It’s possible your body is just not happy after the latest docetaxel or there is another issue but any heart issues that may arise are usually bit not always … a bit further down the line due to the cumulative effect xxx

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@mrsjelly sorry you have joined the 5% club but now you have a plan and it will be treated. Great that your family have talked and are open about it.

We will be here for you when chemo starts on the 17th.

I enjoy reading your posts as you have such a way with words. You’ve even made me think about why we call a chimney breast, so I had to Google it!

AI found this A Brief History Of Chimneys, Chimney Stacks And Chimneys Pots …A chimney breast is called a chimney breast because it projects forward from a wall to contain a fireplace. The word “breast” may refer to the way it extends out from the wall. Can only assume our breasts are called that because they protrude from our bodies until they go south😂

Hope everyone is doing ok.

@chakakhan How are you getting on with radiotherapy?
:smiling_face_with_three_hearts:

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Hey ladies. I have got some reading catching up to do!
@chakakhan how you doing?
Im waiting for my radiotherapy appointment to come through.
Also going back to the changing to Herceptin from phesgo… my consultant said every case is different and they might have combined C along with Her2 pos.
Im only her2 positive. Is anyone else only her2 positive and still on phesgo? They said not found one cell and had a complete pathological response and took out 15 nodes. Thanks jem :heart_hands: hope everyone had a lovely weekend x

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Did you have all 3 levels removed (nodes)?

@jeml was your BC found in your nodes before chemo? Is that why they took nodes out? Sorry for the question just second guessing what might happen in my surgery :see_no_evil:

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I had 15 lymph nodes removed in total but all was clear. No cells was found in nodes or the tissue and breast. So because of that my consulatant said Herceptin instead and not phesgo x

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Yes it was x

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What great news that you had a complete response, Amazing :heart:

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Thank you! :slightly_smiling_face: they said a lumpectomy but i opted for a double mastectomy and feel quite content about it.
After 5 rounds of chemo i had a mri scan and it had completely gone.x

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Hello everyone

@sm2024 You are very welcome! Sorry to hear about your friend’s husband. What a horrible shock and it will certainly have rattled you. Always come on here if you have a wobble but never feel it’s an obligation. You can contribute as much or as little as you wish.

@mrsjelly - Congrats on your partial retirement. I do confess to going a mild shade of envious green. Just mild though. Rather a mint green than a bottle green.

Your talk of Brownie badges has reminded me of the shame I feel after my mother handed me her old Girl Guiding blanket with all her Brownie and Guide badges and all of mine lovingly stitched onto it. She wondered whether I wanted to stitch on all my son’s swimming badges. And there they all sit in a box in the eaves, swimming badges still unattached. I never was much of a seamstress. Who am I kidding? I was never remotely a seamstress. Just threading a needle would send me into a screaming tantrum. Bad hand-eye coordination!

You are in good company if you are in the same club as the legendary @naughty_boob. If I were you, I’d go for the double mastectomy. But that’s just me. Get ‘em off, I say! For the exact same reasons that you speak of. That all makes sense to me. Chimney breast….why? I’m thinking of Robin Redbreast and that it may have something to do with being a similar shape. It’s a Google. Ah yes, it’s something to do with it projecting outwards so that would make sense. Well what do you know….you learn something every day. But can you retain it? No, in my case.

@shannon27 - My treatment took care of my remaining DCIS and after my mastectomy there was no trace of it left. Can you ask for a brain scan?

@arty1 Doesn’t that just go to show what social creatures we are and what human interaction can do for us? I’m glad you have been able to have a visit that lifted your spirits. I hope your internal happy meter is fully topped up now.

@naughty_boob - You got there first with the chimney breast google!! I should have read the whole thread before starting to reply!

@jeml - I am HER2+ only and on Phesgo. The way I see it is, the more drugs the better! Gimme drugs, all your drugs!

@Linda_Corinne I had 3 nodes removed at the Sentinel Lymph Node biopsy and 2 of them were cancerous so then I had all the rest removed which were all clear. It hasn’t caused me any issues so far. Fingers crossed it remains that way.

My mother has joined Knitting and Nattering club so I am Dadsitting tonight. We plan to sing our way through all the songs from The Last Night of the Proms so probably best she is out!

Love to all,

Salbert
xx

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Did you get total pathological response? I cant remember now x

Aw thats good, yes i see the oncologist on the 22nd so i will be asking what else i can get, i think im just in the thick of it 3/6 cycles and just paranoid about something being missed.

Hope your well xx

Just dropping in to let you know that I popped to the dentist today for a checkup before starting chemo next week (hopefully) and the dentist gave me a prescription for Fluorode toothpaste - 5000ppm. Wasn’t sure if anyone else had this but she said it helps protect my teeth for the treatment. She also said that she gave prescribe something for my mouth if it gets too dry. Not sure if you guys knew this or not but thought I would share.

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