HER2+ and need some buddies

Jane, I think I spoke too soon. This evening was supposed to be our FaceTime with them so that we could show them our home ahead of going to meet him and they have gone strangely quiet. Sigh…

Hi @helsbels2 you’re sure right about those dental bills hurting. I had to have a veneer put over a tooth with a hairline fracture - found during my check before starting Ibandronic acid. Then I chipped a bottom tooth too. Repairing both: yikes the bill was enormous!

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@suedot Nooooo!!! That’s just adding insult to injury. I have my dental check up (ahead of first zoledronic acid) a week today. A dental bill can just wipe out your savings in one fell swoop. I’m praying it’s not too bad. :pray:t4:

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Hello @suedot
That’s so unlucky, hopefully you’ll win on the premium bonds or some forgotten competition you entered and get lucky that way :crazy_face:
My dentist couldn’t treat me as I developed a cold sore a few days before my appointment, worse still the cold sore then traveled into my nostrils- ouch - sooo painful :persevere:
At least I saved on the dentist fee I guess until I can re- book that is .

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Hi @salbert
Good luck with the dentist and your first Zolendronic acid appointment. I don’t even know how that ones administered.
X off to Longleat tomorrow morning for 3 nights in the camper van !
Rain rain and more rain at least we’re getting away though.
Xx

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@helsbels2 I love Longleat and I love my camper van. Sounds like a winning combination.

I’m about to have chemo no. 13 and then tomorrow we are off to West Wittering but not in our camper van as a friend has given us her holiday home for a long weekend for our wedding anniversary. The Arctic weather has made me rather pleased about the fact that it is indoors, has a toilet, a shower and heaters. British Summertime, my :face_with_symbols_over_mouth:!!!

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@salbert

Happy Anniversary. Have a wonderful whatever the weather :smiling_face_with_three_hearts:

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Hello all. Im trying to find out if anyone like myself with eastrogen + her2+ grade 1 breast cancer 10mm invasive 30mm dcis with clear lymph nodes, have been treated with just lumpectomy, 5 and 5 boost raiotherapy and leterozole no chemo or targeted therapy. Im 63 and finished rads in November but everything I read about her2 breast cancer involves chemo and targeted therapy. My oncologist said it was good news that the stats didn’t advise it. I have mentioned my concerns a few time with the breast nurses but they didnt think I should worry and said the oncologist looks at every case differently. Thank you in advance.
Jill

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Hi, if you have concerns ask for a second opinion from another oncologist. If you can afford to go privately you could see one from the Royal Marsden. You can still have your treatment on the NHS. I don’t know the answer to your question but this is your life and you need to feel happy. Wishing you well during your treatment.

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Hi Jill,
I was in a similar situation; diagnosed in June 2021 age 57, Stage 1, grade 2, 9mm IDC HER2+, ER+ and 40mm medium/high grade DCIS. Lymph nodes clear and no LVI. The HER2 was borderline, but confirmed positive with a late FISH test. I had a mastectomy in July 2021, no radiotherapy or chemo and just on Letrozole for 5 years. I was very anxious about the HER2+ as it was hard to find anyone else who didn’t have chemo. I had second opinions and was told that everyone’s diagnosis is unique and it is a combination of factors that are used to decide treatment. (Chemo would only have benefitted me 1%) At my yearly check ups I have it explained to me all over again and I’m starting to feel a little more at ease about it. Third meeting coming up soon - they must groan inwardly when I arrive with my pages of questions! I am a firm believer in advocating for yourself, so I would say definitely get second opinions and ask all the questions you need to.

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Thanks Shade and Moon and waves for your lovely replies and for taking the time to answer my question. I will ask again. Its comforting to know at least somebody else with similar stats as me has not had to have chemo and targeted drugs just the surgery, and in my case rads and Leterozole. Hopefully all being well I will feel a bit more settled after first mamogram in a few months time. Hoping you’re both doing well. Best wishes Shade and Moon with your up and coming meeting. Thank you both again.
Jill

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Hi Jill, I had a grade1 stage 1, ER+5, PR -, Her 2 +, 1.6cm tumor removed by lumpectomy recently. Like you, also dcis found intra-op that made the total 2.6 cm . I’m 52, just waiting for radiotherapy now and then its done, no chemo or herceptin, on tamoxifen as pre-meno.
I think the key is the grade and PI index as to chemo or not, also that stage 1 as no lymph involvement. They didn’t even think my tumor warrented oncotesting as the grade was low, as was the PI. Looks like we have a similar plan - though I have 19 RT sessions, but that relates to margines.

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Hi @jill2

I was told I would just have a lumpectomy and radiotherapy until they found it had made its way to my lymph nodes. I think that is the standard treatment unless it has got into the lymph nodes. That said, a second opinion is always good and I’m forever glad that I went to The Royal Marsden and switched so I highly recommend them if you are anywhere near.

Salbert

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Hi salbert. Thanks for your reply. I will deffinately ask again. It is a bit more reassuring that there are others like myself. So grateful for all of your
advice and kind words. Thank you all again.
Jill

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I think that being able to compare what we are going through with everyone else is of huge benefit. Do keep us posted @jill2

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Bit of a random topic but just wondering if anyone has or had a Hickman line in for chemo? My veins have given up after my 4 EC chemos so I’m now delayed for Docetaxel till I can get a Hickman line as PICC is not an option due to my veins too unfortunately. Just looking to see your experience with it, and how you managed it (bit worried about infection with the plastic bits going to be dangling about etc) and how it impacted on day to day life (I have kept up with exercise till now and don’t know if I’m allowed to do anything sweaty with it or if it has other restrictions in general). Have been looking lots of places but not a massive amount of info and still waiting on my appointment so have no info from the right people yet. I know my questions may seem trivial but just unsure of the practicalities of it and life is already upside down so looking to figure out what else might change with the Hickman

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Hi @belle1

So sorry to hear you are experiencing delays due to your veins. That must be disappointing and frustrating for you. I have a port-o-cath in my arm which has been brilliant. I couldn’t feel a thing when they inserted it due to the local anaesthetic, it sits just below the skin and one of my nurses told me the chemo goes straight to where it needs to go and saves your veins. I can’t feel it and it doesn’t affect day to day life in the slightest.

I have just Googled it and can see that they are similar but that the Hickman goes into the chest area and obviously has the plastic bits that you speak about. The Port-o-cath can also go into the chest but I needed mine done quickly and the arm was a local anaesthetic whereas the chest was a general and there were no immediate appointments available so my team at Marsden recommended the arm. So if you asked me, I would recommend doing it. I imagine they will have some method of covering the plastic bits up but I can’t pretend I actually have a clue so sorry I can’t be of more help re that. Hopefully somebody on here will have more of an idea than me.

I hope and pray that it gets done quickly and that you can get on with treatment.

Big hug

Salbert
x

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Thanks @salbert just felt so deflated and tired yesterday as they blew 6 veins trying to get one then needed the PICC assessment and wasn’t suitable so felt like one thing after another. I’ll definitely be doing the Hickman though as it’s my only option for continuing chemo (I asked about port but would need to be in chest for me and waiting list too long).

Just a bit of a spanner in the works I suppose and sounds silly but I’m not even fussed about the procedure to get it fitted as I just have to do whatever is needed, it’s more just figuring out what restrictions I’ll have. I’m going to buy a couple zip front bras as I’ll need them post surgery anyway and figured I could maybe tape the plastic bits to me/tuck them into the bras in bed. I’m a very flippy sleeper lol so it might get interesting! Will just need to be as careful as possible.

Will be glad to get my appointment as I find the hardest part is the being in limbo and waiting. Once I have a date to work towards again it seems to settle me☺️

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Thanks Salbert
Will do. You are so kind with your replies. Im not a great talker but this site and lovely people like yourself are such a huge help when you’re going through stressful times with this awful thing. Best wishes to you and everyone who unfortunately finds themselves in similar situations.
Jill

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@belle1 I would have found that all hugely upsetting too. It sounds really awful and being in limbo is definitely the worst part. I think everyone feels that. We just want to be getting on with getting it sorted.

I’ve been buying more post-surgery bras ready for my mastectomy on 7th August. I’ve bought some from M&S and a pretty one from Damart but I’ve been told Primark do a good range too. Everything crossed your appointment comes through quickly.

@jill2 Believe me, sharing this journey with you guys has been and continues to be a lifeline for me. I also feel a sense of responsibility to pay forward the kindness that was shown to me when I joined this forum at the end of December 2023. I was a mess and all these fabulous women just came straight to my aid. I AM a great talker! :smile: To anyone who has ears. I agree this site is such a huge help so I’m really pleased that we are all here and continue to put our arms around each other and cushion each other through the buffeting blows that this disease bestows upon us. I feel the strength and safety in numbers.

Love to you all.
XX