HER2+ and need some buddies

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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Hi everyone,
Questions for those of you that had prior lymph node involvement and went on to pCR at surgery.

Was the lymph node involvement confirm by biopsy? How many involved and how big?
Did your pathology report at surgery indicate any scarring to lymph nodes even with them being clear?

Some background…At my first ultrasound, there were 3 suspicious nodes with multiple smaller ones surrounding it. Ughhhhh… Only the largest one was biopsied and confirmed positive for cancer so we don’t really know if the others were positive or just inflammed.

I had a pCR at surgery (lumpectomy and full lymph node dissection) after chemo.
They took 12 nodes out and all were clear of cancer BUT all had fatty scar tissue.

I asked my oncologist if that meant that all 12 nodes had been positive for cancer cells even though they only biopsied and confirmed one. He said there was no way to tell, as scar tissue could be from chemotherapy, inflammation or a healing response.

I am interested to hear about everyone elses experience with lymph node involvement when treated with chemo before surgery, how do you know if you truely have more then one positive node?

Had my last chemo last wednesday get lumpectomy on 3rd february all going well with cardiology and bloods . Do any of you know when they restart target treatment, i thought they continued with it but im told they stop it till after surgery, do they continue after surgery or after radiotherapy x

@caz591 our trust continues with Phesgo whilst waiting on surgery. Are you having Phesgo too?

I’m continuing on Phesgo and started Exemestane but although finished chemo in November I have to have a CT on the 30th January first so surgery will be 3 montha after finishing chemo I guess. I finished on 15th November early as I had Sepsis.

Yes im on phesgo. I was surprised when i was told my target treatment was stopping, oncologist said they wait on pathology results from surgery to see if they will continue with phesgo or change to another target treatment x

I had mine tested at biopsy and it came back positive. However i did have 3 nodes swollen on ultrasound but they only tested the one so i not sure if i had 3 positive or they were just swollen.
They never mentioned how my nodes looked at testing just said that no cells was found and i had total response.
@caz591 i had my target therapy as normal after my operation and this was just over a week after and i was still waiting for my results from surgery.

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Thanks for your response @jeml, I do appriciate it.

At first, doctor did not mention the scaring, he just indicated I had a pCR.
When I read the pathology report myself, I went back and asked for more clairification, which is when he said there was no way of knowing.

This was the wording on my report (which of course I anyalyze every word):

"Treatment Effect in Lymph Nodes: No lymph node metastases. Fibrous scarring or histiocytic aggregates, possibly related to prior lymph node metastases with pathologic complete response. Number of Nodes Examined: 12. All regional lymph nodes negative for tumour.

I don’t know why I still keep worrying.

Afternoon all

@jeml It’s hard to answer that question for me, because I never had a lump or anything that showed up in scans so they could only go by the histopathology results. There was no cancer left in the tissue they took during the mastectomy so we can assume yes to a total pathological response. In all my previous ops which were Hadfield’s Procedure followed by three lumpectomies, he couldn’t get clear margins but wouldn’t agree to a mastectomy. Hence why I switched hospitals!

@shannon27 - Of course you are paranoid about something being missed. You must definitely ask for reassurance and take whatever they can offer you. I’m doing good, thanks.

@fimac1 What a good dentist you have there. I wasn’t offered anything like that by my dentist but my boss advised that I got a special mouthwash to use during chemo which I did. I got it from Amazon. Also he told me to get an ultra-violet case to put my toothbrush in to kill any germs while having chemo. I’d forgotten all about those. Good info.

Hi @browneyes - My 2 cancerous lymph nodes were found after the sentinel lymph node biopsy but no further cancerous lymph nodes were found after the total clearance. I had all this done before chemo so have no idea what would have happened had things been done the other way around. The wording on your report sounds positive but it’s normal to keep worrying.

@caz591 I’ve just checked back and I had my Phesgo one week before my mastectomy then had the next one two weeks after that so basically I never stopped having it. I have been having it at 3 weekly intervals since 11th July. I am due to finish on 10th April 2025. I’m wondering whether your situation might be something to do with switching from Phesgo to Kadcyla if the pathology results show some residual cancer. That seems to be what has happened to a few of the women on here. Hopefully the results will be very soon so you can plough on.

Back to Dance Fitness class tonight and after requesting we do some Musical Theatre numbers, I have been told we will be learning routines to All That Jazz and something from Grease!! I think I’m going to be loving this term. Here’s hoping I have enough puff to sing along. :smile:

Salbert
xx

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I see, i got mine back a few days ago but just says
The histopathology came back consistent with complete pathological response and 15
axillary lymph nodes were removed and all were negative. Her case has been discussed at
our Breast Multidisciplinary Team Meeting and the consensus is for her to have completion
adjuvant Trastuzumab and she will be for radiotherapy to the chest wall and SCF.
Just had a look at my letter now :slightly_smiling_face:
The main thing is you have had pathological response so i would not worry. I spoke to someone yesterday from someonelike me and she also got total response… she has a scientist friend in oncology and he told her a PCR is the best result to get and that prognosis is excellent and really low for it to return.x

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Evening everyone.

I hope everyone is doing ok…or as ok as they can be in this s**tshow.

I just wanted to share my news. I saw my surgeon today for my surgery results after almost 7 weeks. I’ve had a pathological complete response and no evidence of cancer in the breast tissue removed during the lumpectomy. The complication that the nurse had referred to when I chased the results turns out to be a good complication. Which now makes me feel ridiculous for my melt down afterwards. But basically, they removed 14 lymph nodes and said that there was no evidence of cancer in any, nor any scarring or evidence that there had been cancer in any of the lymph nodes. So they had to go back to look at original biopsy to make sure there hadn’t been a mistake. My MRI at the start showed 1 lymph node which was 2mm in size and when they biopsied it, it came back positive for cancer. They’ve concluded from the surgery results that it is likely only that 1 lymph node was cancerous and that the amount of cancer in the lymph node was tiny - a speck the surgeon said.

I’ve cried lots of happy tears for the first time in a long time. The tumour in my breast was initially sized at 5cm (or the size of a lime) back in May/June last year, so this is beyond anything I could have hoped for. I’m so thankful to my medical team and so grateful to have found this forum xx

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I was initially told that they would give a bridging dose of phesgo - 1 before surgery and 1 after surgery and then make a decision re ongoing treatment after results were back. The oncology nurse told me that. But then that seemed to change to continue with it - so I continued having it every 3 weeks before and after surgery x

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Great news @rrey that must be such a relief xx

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@rrey
Congratulations! Wonderful news!
Thank you for your details regarding your lymph nodes!

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Thank you @jeml and @salbert, I am, again so appreciative of your positive words!

I had all the treatments offered to me, chemo, Herceptin, surgery and radiotherapy. I have 4 more Herceptin treatments left to complete, and ongoing Anastrozole for 5 years due to me also being ER+. (Double whammy!)

Although I don’t post much, I have been quietly following this thread since I was diagnosed in January 2024, and honestly, it has helped me get through treatment and a lot of tough and sad days.

Whenever I am feeing sad, negative, or in a panic, first thing I do is come here and re-read this thread! The positivity really does come through strong. I am sure there are others who don’t post either but may use this thread as a lifeline!

I am happy you are all doing well and living life! I love hearing these stories!

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Fantastic news @rrey and never apologise for venting on here. You wouldn’t be the only one to worry about a word like complication.

I was told that it is common practise to go back and look at previous tests such as mammogram or biopsy if something is found later to see what might have been missed before. I had a mammogram and confirmed 1 tumour and then an MRI found a 2nd in the other boob. I had asked why wasn’t it spotted on the mammogram and was told by the breast nurse that it is common practice to go back and look at that area for any anomaly. It’s a learning experience. In my case they couldn’t see anything in the mammogram, it was far back near to the chest wall.

Take care :smiling_face_with_three_hearts:

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You are welcome :slightly_smiling_face: and i think now and again its normal to spiral… we have been through it alright! Ptsd comes to mind from it all.
I mean, today i have a bit of belly ache and feel a bit sickly… so the mind spirals a bit baring in mind i got a complete response and surgery was 4 week ago tomorrow :face_with_hand_over_mouth::joy:
I think its my hormones tbh they are trying to get back into routine i think. Had period pains a good few days on and off now! So will see what happens i not had one through all chemo as it stopped them completely.
@rrey congratulations! So happy for you :slightly_smiling_face::muscle: you must be thrilled. X

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