HER2+ and need some buddies

[leelee1]

Hi @rrey yes I had a scare too. It was actually something I had on my arm that I went to GP for in the first place, I just happened to mention the lump in my armpit at the same time.

In the end my arm was bcc, luckily they got it all at the first appointment (offered biopsy or just to remove all, so I said get rid). I waited about 10 weeks over Christmas for the results and yes it was horrible, like you my mind was going everywhere - especially as I had got my unexpected BC diagnosis too.

If I hadn’t have gone to get it checked I still wouldn’t know about the BC. So I suppose the moral of the story is if you know about it, you can treat it. I’m sorry you are in this situation, it sounds like you’ve really through it recently and it is totally understandable for you to be having a massive wobble at the moment, especially with the fact you can’t do those exercises at the moment, but you are obviously a really strong woman.

I do hope that you get the positive outcome you are hoping for, and you can healing soon. x

[galdiolus]

@salbert thanks for your message. The surgeon has suggested expander implant as there is a chance I need radiotherapy.
It’s all very confusing as they haven’t been able to measure the tumour since my first scan after I started chemo. But as I have DCIS (microcalcifications) they don’t know what is and isn’t cancer now so can’t give me any more answers until after my mastectomy.
Last night wasn’t good as I got into my head about it in the small hours. I hate the uncertainty and just wanted them to say I had a PCR even though I knew they couldn’t because of the microcalcifications.
I really wanted the DIEP and both my surgeon and plastic surgeon cautioned against this and I hadn’t researched the expander as I wrongly thought they used those for delayed reconstruction.
I was pleased to see your comment about expander which fills me with hope as you worry about the failure etc which inevitably my surgeon talked me through yesterday
Any more tips gratefully received. I assume your implant reconstruction was before your radiotherapy
On a plus note having my surgery either 31 Jan or 8 Feb so not too long to wait!
Also did you come home same day?
Sorry for the questions. I bet your glad you asked now xx

[purple_rain]

Hi @galdiolus im alittle behind you and about to have round5 chemo tmw and my surgery will be in March.

I too have DCIS and have had the same worries as you as I’ve had my mid scan which showed reduction in size but then yesterday my onc was like we won’t know anything until after it’s out at surgery. Have you had a scan after all your chemo treatments?

My onc also said that my phesgo will stop with my six chemo cycle and nothing will happen until after they have the results of surgery back. Is that the same for you? I feel angsty about this as surely it’s best to keep the tx going??

Anyway not long until your surgery. I hope you are getting some rest before that date xxx

[galdiolus]

@purple_rain yes two scans during chemo last one after cycle 5. They say it’s responding but can’t measure which makes me very anxious.
I am continuing Phesgo have one next week and carry on infact have all booked in.
Good luck with your last chemo and surgery xx

[mrsjelly]

Happy Sunday, Monday and now it’s Tuesday I’m not a starter finisher. Half job hilling again!

Hello to new joiners to this marvellous thread.
Allow yourself a whole afternoon to read it in its entirety!

Thank you @Salbert for sharing your epic poem. I’m thinking of following the BOGOF theme with my surgery, Breasts Off Get Others Free.

My PICC line insertion on Thursday was a painless experience. Just the expected sting with the local anaesthetic. Arm ached for 24 hours.

First cycle of treatment trouble free on Friday with the exception of forgetting I was attached to an IV pump and a plug socket and strode off to the toilet . Rather embarrassing as I made an audible ouch as it twanged my right upper arm!

Light, bright unit. Kind and efficient staff. Fed and watered. Phesgo, aside from the needle entering was painless. Had Carboplatin and Docetaxol. Didn’t bother with the cold cap after a conversation with a nurse the day before decided that it wasn’t for me.

Tired in the evening but we had returned home and I wanted to go to B&Q then fancied a toasted sandwich. Prepped it all and turned on said machine. Acrid smoke emerged so had to whisk it into the garden incase it caught fire. Then decided to get a replacement from Argus. Not in stock locally so trip to retail park on outskirts of Brighton. Other shops drew me in- reduced hot water bottles, crinkly bottle like mine for husband (he’s now peeing hourly too). Reduced food in M&S, Lucozade in Asda… Two hours later got home. Sandwich was an anticlimax. Not enough filling!

Slept well Saturday night. Went for a stroll around Wakehurst in the afternoon. Not such restful sleep Saturday and Sunday. 4 hours Steroids stolen it. Been awake since 0300 today so decided that as I’m knackered and aching I wouldn’t go into work. Pangs of guilt about it but no presenteeism anymore. Reminding myself people stay off with colds and plaster casts. I’m not shirking!

Last dose of steroids yesterday. Started filgrastim injections Sunday night. Had been wondering if and when I’m going to feel more rubbish. Aside from feeling shattered from sleep deprivation and aching I thought I was okay. By 4pm I felt like I’d been run down by a bus! Took a sleeping tablet last. 10 glorious hours of unbroken sleep. Bloody marvellous.

Next Tuesday we have my daughter’s graduation at the Barbican. Mindful I’ll be in the nadir so increased risk of infection but it is my goal to go. Life goes on and I need to celebrate her achievements and take a risk. It is at 10 o’clock so I’ll be in with the rush hour commuters probably alongside people going for treatments with compromised immune symptoms.

Better get my arse into gear. No festering today. Using my voucher for a free coffee in Greggs and going to shoe repairers.
I’ve done a few commercial plugs today of well known high street stores… I may feel up to going to work tomorrow. See what tonigh yields…

Xx

[lisalisa]

Hi everyone . Diagnosed October 2024 with DCIS 10.5cm high grade invasive ductal carcinoma 2.5cm HER2 positive and ER negative .
I’m 4 cycles through out of 6 of carboplatin, abraxane and phesgo . Surgery being masectomy after chemo

[galdiolus]

Welcome @lisalisa your story is similar to mine. I was diagnosed August 2024 7cm dcis, 1.7cm invasive. Completed 6 cycles of TC Phesgo and having mastectomy either next week or week after xx

[jeml]

Thank you @salbert you always know exactly what to say! Well today i got my tattoo dots in place for radiotherapy, i start my first one on the 5th feb and i have 5 cycles all together. Also i have swapped from phesgo to just only Herceptin as its protocol now if you have a complete response and my Dr today even said that there was no evidence of scars on any of my lymph nodes… which im presuming is good because she said C usually scars them… i did test positive for a node so i am wondering if it only jusr started to spread there maybe… i saw a post similar other week about scars and lymph nodes but cannot for the life of me think who it was! Think i have about 3 brain cells left after all this i had my implant in my stomach yesterday too to surpress ovaries so i can start them infusions soon! Was not expecting a implant and big needle… anyway needs dont bother me and she said first time in 5 years she had someone that did not bat and eye lid or flinch lol. Anyway just waiting for lovely menopause symptoms to kick start now

[salbert]

Good afternoon, oh fabulous ones

@rrey - Massive hug coming your way. That’s a bit much, isn’t it. Kick a woman when she’s down, why don’t you? I’m so sorry that you’ve had to wait so long for the dermatology appointment too and now a horribly long wait for results. I echo what @leelee1 says in that if they know about it, they can treat it. Also, I remember this time last year becoming convinced that all the red flags that had shown up in my scans meant spread. My husband and best friend kept telling me that we didn’t know yet and that I was getting ahead of myself by deciding that it meant the worst. Turns out they were right and I was wrong. So just because your mind is telling you that it is going to be bad news, doesn’t mean it will be. Every time your mind tells you that it’s bad news, please hear me saying 'Not necessarily, so butt out until you have the facts!".

Hello and welcome @hlc and @lisalisa - I seriously think you won’t find a friendlier or more supportive group on the internet. And that includes the WI, the Worldwide Guiding Association and the Friendly Society of Friendlyville. Not sure why we are so fabulous but I have a sneaking suspicion that one day they will discover that HER2+ bc mainly happens to really great people. This is probably also the reason that we are so good at beating it. (That and the drugs, oncologists, surgeons etc.) Lots of sound advice on here but ask away if there is anything specific. There are so many of us that there is always someone who knows and if, in the unlikely event that there isn’t anyone, there is always @naughty_boob. I’m convinced that she knows everything. She has an encyclopaedic knowledge of all things bc related and possibly everything else in the world, ever.

@galdiolus - Those wee small hours are the absolute worst, aren’t they. That’s when all the intrusive and unwelcome thoughts decide to drop in and then they leave you so depleted and strung out by the morning that they have a habit of hanging around the next day. If it’s any consolation, I was in the same boat and it was only after they could look at the mastectomy tissue that they could tell me it was all gone. I really wish I could post a pic on here of the fabulous result of my tissue expander pumped up to the same size as my real boob but I am absolutely sure it would break some forum rules. I could try to send you a pic on the personal email section on this website if you like? They have to talk you through the failure risks but I am genuinely really impressed with how mine looks now. I have 3 months to go before they replace it with the permanent soft implant but I will be surprised if there are any changes now as I finished radiotherapy back at the end of October. I had the tissue expander inserted at the same time as my mastectomy on 7th August. I also came home the same day so it was all rather textbook. I know I keep saying it but get some Flamigel RT for radiotherapy and whack it on. Never apologise for questions. It’s what keeps us sane!

@mrsjelly - Happy Tuesday! Looking forward to hearing Breasts Off Get Others Free!! Glad to hear that Fridays treatment was largely uneventful and that you then had a packed weekend (including the reduced M&S food - hearing you there!!). That sounds rather like me on my steroid-fuelled first weekend when I was convinced that chemo suited me and gave me a fantastic energy boost. Damn those pesky steroids! God bless sleeping pills and I don’t care who hears me say that! I would do exactly what you intend to do and get to your daughter’s graduation. My friend who had been through bc before me and was my unofficial Cancer Coach told me that she did a presentation on stage to 500 people just after her first chemo. She was also determined to make it to Wimbledon which was a client event she had organised which was at the end of her chemo and she made that too. For me that was really encouraging and while not everybody has the same experience, I got off quite lightly with chemo so was able to still socialise and do the things I really wanted to do. I just didn’t overdo it. Just listen to your body. You’ve clearly not been a shirker in your life and you’re bang on, people stay off work at the drop of a hat where I work. We do actually have a legitimate reason for feeling like crap! Enjoy the free Greggs coffee. We have a new LIDL just opened in Caterham which I absolutely love. I discovered all my free item vouchers at the weekend so made sure I included them in my shop on Sunday. I got home only to discover that I’d paid for them all as I’d failed to activate the vouchers. Doh! Won’t do that again. Fortunately they were for pies, doughnuts and shower gel so it’s not like they’ll go to waste.

Love to all,

Salbert
xx

[naughty_boob]

Hi @lisalisa Welcome to the thread and I see you have also joined the November chemo starters @arty1 is on that thread too.

We are a friendly bunch and will support you through your treatment.

[hlc]

Thankyou. Im seeing oncologist tomorrow so if i dont get my answers or forget to ask something ill be back like arnie says x

[naughty_boob]

I always found it helpful to write my questions down and tick them off as I asked then, leaving a space to jot notes down.

[shannon27]

Similar diagnosis 10cm dcis and 12 mm stage 2 grade 2 triple positive idc , diagnosed october 2024 x

[knock-knock]

Hello lovely people!

I have been reading for a little while now but wanted to introduce myself.

I was diagnosed in Oct aged 42 with 12mm triple positive IDC, had a pretty straightforward lumpectomy/slnb in Nov, clear margins and 0 lymph nodes reported in Dec, had my first of 12 weekly paclitaxel + 18 3-weekly herceptin last week, next dose tomorrow.

The only time I have cried for myself was in the chemo room last week (I had a portacath put in in the morning and by the time the fresh-from-the-fridge poison was flowing through the local anaesthetic had worn off so it was rather painful on my bruised tubes) but I have cried quite frequently for the 2 friends whose funerals I attended 2 and 6 days after my op who both had much more proper cancers than my what feels pretty trivial one (leukaemia and neuroendocrine cancer)

I think it still hasn’t really sunk in that although I have known for a long time that BC is very successfully treatable (I’m still surprised to see it’s quite as good as the “nearly 100%” on the Cancer Research UK table for 5-year survival for Stage 1 - but I’ll take it ), successful treatment is not quite the same as easy treatment. But I do know that with my current programme of surgery, chemo, herceptin, radio, medically induced menopause and tamoxifen for 10 years I’m going to be in this for the long haul…

Asking for help has never been top on my list of strengths but maybe that will be something I can learn from all this, so here I am and any wisdom and guidance would be much appreciated

[annie7]

Did you have another ultrasound after cycle 4? If so, did you have more shrinkage? My first ultrasound showed a good response too but then 2nd one was much smaller.