HER2+ and need some buddies

Hello all. Not written anything lately, struggling a bit from a mental health perspective (not improved by my son kindly passing his Covid on to me). I seem to be having some kind of dissociation to the whole of 2024. For example, I came across a photo of a PICC line in my photos, pointed it out to a friend and said I could never have one of those. The photo was of my arm and my PICC line! I also got really confused when I saw a photo of me without hair and claimed I had never been bald. I think my head is trying to catch up with what has been happening.

Anyway, I have been following all the posts and feeling pleased for those progressing through treatment and surgery and full of sympathy for those facing bumps in their treatment road.
Just wanted to say Happy Christmas to you all. Wishing you a peaceful festive season and a a healthy (healthier) 2025.

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Thank you @naughtyboob

Where to start with what is now becoming ā€˜A tale of two titties.ā€™ Having grown up in Portsmouth, the birthplace of Charles Dickens I thought it mightvbe an apt moniker on this thread then discovered itā€™s the title of an adult film and a couple of books. :rofl:. Opted for Mrs Jelly as my mumā€™s predictive text renamed me when she messaged me!

So, thankfully due to Covid my first mammogram on the screening programme was delayed by two years late. Had it not been, my next mammogram would be next year rather than this year.

So it showed a couple of areas of concern in the left breast which culminated in an invite to second stage breast screening. Spent a long morning at the breast care centre waiting to have more scans. Ironically whilst waiting heard about Amy Dowling and Chris Hoy, then a bit more Amy on the TV. Oh to have had the remote control to change the channel. So had a 3D mammogram and USS and was informed Iā€™d need mammogram guided biopsies which was booked for the following week.

Attended for the biopsies. Not too unpleasant. Squashed and skewered twice. First felt like a wasp sting deep inside, the second I felt nothing. Appt booked for results the following week. The day before the results were due the appointment was cancelled. Owing to staff sickness the biopsy results were not available. Rebooked for a week later.

Attended appt on 21st November. Informed that biopsies revealed that I had breast cancer. DCIS in one area and precancerous changes in another. Likely to need conservative management. As 25% breast would need to go, oncoplastic surgery. Was told that I had dense breasts and as a consequence I would not have felt the mass until it had got larger and to stop my HRT and have Mirena coil removed. Had to be HRT free for two weeks then Iā€™d have a MRI scan. Managed to get a cancellation that afternoon in a Sexual Health Clinic. Old building down a road to the seafront. Dark and dingy inside. Lovely staff. Painless experience. Returned to work in the afternoon as I had a meeting to attend :woman_facepalming:t2:

Broke the news to my adult children the next day. My husbands birthday. Thought Iā€™d wait till theyā€™d finished their working week. Hardest thing Iā€™ve ever done. Dreadful.

Following week received a phone call inviting me to meet the surgeon on the Friday. Day before the appointment received the clinic letter from the first appointment and the word ā€˜invasiveā€™ jumped out at me. Hmmm. Piqued my anxiety. Following day bin met with surgeon. He said that he wanted to meet me before the MRI and to find out about me. Then went on to tell me about my results. I naively hadnā€™t realised there were more to come. So I am oestrogen and progesterone positive and HER2 positive. So this meant I would need chemotherapy and targeted therapy. Timing of treatment dependent on results of MRI. ā€˜Itā€™ was measuring at 18mm. Should MRI show it to be 20mm or larger Iā€™d need neoadjuvant therapy. Quick examination and the words ā€˜mastectomyā€™ and ā€˜no nippleā€™ mooted. I was stunned. First thought was how am I
I going to tell the kids worse news a week on and what about my job. No thought for myself.

December 9th. MRI day. Lay poised like Eddie the Eagle Edwards ready to take flight, with face resting in a horseshoe shaped frame, breasts dangling in the holes of a black cushion and cod liver oil capsules secured to nipples with micropore (was told I could have them horizontal or vertical :rofl:). The injection of contrast was very peculiar. Felt it prickle up my arm and the throughout my head. Mouth filled with saliva and I had to steal myself from vomiting. Zoned out and imagined I was somewhere else. No deep breaths allowed else by boobs would rise and fall and spoil the imaging.

Two days later, whilst I was at work, the BCN phoned. I had been discussed at the MDT. MRI revealed ā€˜itā€™ was more extensive and difficult to size so I would need treatment before and after a mastectomy. Breast conserving surgery no longer an option. In addition, something indeterminate seen in other breast so that would need a second look that week. Felt floored by the new. Rang husband to collect me and I gave him the bad news. Decided to wait till the end of the working week to tell the kids worse news for the third time.

Two days later, Friday 13th met surgeon. He confirmed what Iā€™d been told. Chemo and targeted therapy for 6 which is to start before the New Year. MRI, I have forgotten when to see if treatment has worked; review with him in May to discuss surgery; 6 weeks to recover; left mastectomy around July. Then Iā€™ll have radiotherapy and another 6 months of targeted therapy. Then mentioned sometimes further treatment needed. As for right one, USS and 3D mammogram the same day.
Informed I should have ECHO, CT staging scan and oncology appts the following week. He said CT scans can be like opening Pandoraā€™s Boxā€¦.:woman_facepalming:t2:. Hope they find nowt else in mine.

Terrible sleepless weekend. Shocked. Tearful. Felt wired. Went to work last Monday having been awake since 01:30 (several hours spent reading this thread) but much of it stuck in the rabbit hole. Did online e-consult to GP as soon as surgery opened to request something for sleep and mood. As @salbert said. This is a long haul flight to Australia via the moon. Needed something to help me on the trip! Left work after 5 hours as I was unfocused and ineffective. Felt like Iā€™d worked a night shift with no sleep the day before. In bed at 15:30 trying to stay awake as GP phoning. He rang at 16:50. Was very kind and prescribed Mirtazepine. Slept for 10.5 glorious hours and forgot about the shit show thatā€™s going to be my partial retirement.
Yep, after 36 years service to the NHS dropping to 3 days a week from January. Exchanging my city breaks in Europe and trips around the UK for 3 weekly lounging in a chemo chair near the coast. My new plunging swimsuit ainā€™t going to look right with a mono boob. Hey ho!

So last week I had an ECHO. Lovely lady did that. Not an ounce of my chest exposed. Scanning all done discretely under a towel. Heart okay. Transpires her father wrote a love letter to her mother when he arrived in Germany to the town where I was born (my Dad was in the army, hers the navy). She asked if she could give me a hug and wished me well. Hope to see her for my next ECHO.

Had my CT scan on Thursday. En route BCN rang to tell me my imaging has been sent to Northwick Park ro be reviewed. They will contact me if I need an MRI guided biopsy of right one. I was a cannulation nightmare. 3 staff, 6 attempts and 50 minutes. I was silently willing them to succeed as result of scan needed to determine treatment. I was also willing the scan to not show up any anomalies.

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Oops posted before checking for typos and saying Iā€™ve not yet had the oncology appointment through. I don know why I wrote the word ā€˜bin!ā€™

Itā€™s weird, after the trauma of the bad news, after 4-5 days of mulling it over and overthinking, sometimes a little catastrophising it then sits okay with me.

I have psoriatic arthritis. Since 2019 been switching drugs and having steroids to try to manage it. A year ago started a biological therapy which took 5 months to work. Since May I have been able to walk normally and am pain free. Dreading the fact that I may have to stop it if Iā€™m to need more immunosuppressing drugs. It will be miserable.

I am undecided as to what to do about work. Iā€™m the sole person in my service so my absence will be felt. They are advertising my job to cover me for a year. It was vacant for 8 months before I startedā€¦ no internal interest so going out to the nation. Interested to know how people manage to work around treatment or if they just go off sick.

Thank you

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Hello yes 2nd dose on friday there and my knees ankles and legs are so sore very tired still just trying to rest up as much as i can for Christmas with the wee one, how are you doing ? I have pain up my arm from the canula no brusing as of yet but im sure this happened last time :heart:xx

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@mrsjelly what a journey for you and I empathise the wait for results is such an awful time. I also had to ask for help for sleep in those days. It feels like you get through one thing and then you have to wait for the next results and the plans change but the wonderful NHS staff know what to do and when to do it so just surrender to that.
The great news is the treatments are amazing now and although they are tough knowing they have such great results certainly helps me face the tougher days.
I hope you manage to enjoy time with your loved ones over the Christmas period and know all of us on the forum will be here to offer support through your treatment xx

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@shannon27 I feel the same as you, ankles and knees! Just two more filgrastim for me and only one more chemo to go :tada:

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Yes i was going to try having a bath today to soak in, aw your nearly there ! Yes ive got 4 more chemo and to start my injections today 10 of them :weary: i feel like i will be soaking myself in baths for the next 2 weeks if it helps x

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Hello lovely gorgeous ones

Iā€™m in a massive rush as have to go and deliver Christmas cards and gifts and want to do it before it gets dark and as you know, I was up in London all day yesterday BUT I desperately wanted to jump on here to say HELLO AND WELCOME to @mrsjelly and I am so glad you have joined us. I wanted to answer yesterday but they were ringing the bell for the matinee to start so I just didnā€™t get the chance. Iā€™d love to know how long it took you to read in excess of 1500 posts. Well done! These are the best bunch of women to get you through the next year and beyond if thatā€™s how long it takes. We all know what you are going through and how desolate and desperate it can feel. Thank you for sharing your story and I promise I will answer properly tomorrow when I am not racing the sunset. I have to deliver one card at church and itā€™s down a dark lane and there is a pirate buried by the door who used to haunt the graveyard so despite me telling myself Iā€™m not remotely worried, Iā€™d rather do it before dark. :scream_cat:

I love you aaaaallllllllllllll!!!

Salbert
xxx

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Welcome @mrsjelly - so sorry that youā€™ve found yourself here but as Iā€™m sure youā€™ve seen from the 1500 posts, this thread is full of supportive women all going through very similar experiences and youā€™ll get lots of support here.

Diagnosis and all the pre treatment tests are a hurdle in themselves! But youā€™re on the path now and it may be bumpy, but youā€™ll walk down this path and get to the other side.

As for work, I think it depends a lot on what you do for a job. Iā€™m able to work from home and have an extremely supportive team around me and felt that continuing to work through my treatment was best for my mental health. It kept me occupied and some normality in my life. I did have about a week off sick after each EC chemo and have been signed off for 4 weeks post surgery, but I worked other than that. Itā€™s a personal decision though and you have to consider your physical and mental health and whatā€™s best for you. Definitely put yourself first though - work will still be there once all this is behind you.

I do hope you are able to enjoy Christmas xx

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@mrsjelly I feel for you. I had something come up in my MRI that needed USS guided biopsy. They though it was an intramammary gland but no I had to have another invasive ductal carcinoma :slightly_frowning_face:

Having two primaries at the same time is quite rare only about 5% of BC. Hopefully you will find out soon what it there and you can get your final treatment plan. For me, finding the second tumour didnā€™t change my plan. The plan was based on the larger grade 2 tumour.

Thinking about you :smiling_face_with_three_hearts:

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