Exactly what was said after my surgery. Ive still till late October to go with the herceptin. Did you have radiotherapy too. Im in for ct 10th February. Been told ill have 5 rounds of radiotherapy and continue with zoledronic acid and letrozole x
Yes 5 rounds of high dose in January 2024ā¦ A year ago 
I e just realised that as I typed.
3 Likes
Thanks, for getting back. Just putting it out there, shows how individual our journeys can be x
1 Like
Aww bless you congratulations on your anniversary. X
2 Likes
@entropy have you ever seen this site https://breast.v3.predict.cam/
It is mostly designed for medical professionals so comes with a (mental) health warning for us non-experts BUT as itās publicly available I felt justified in having a cautious play round with it whilst I was waiting to see my oncologist for his recommendations - so I could be ready with questions if he didnāt recommend what I expectedā¦
With all my diagnostics entered I did get a result that indicated chemo+herceptin would be beneficial, and that is indeed what Iām on - but when I altered the inputs (e.g. I played round with bigger and smaller tumour sizes, grades etc, to see what differences they made) I did find some combinations where the risks of chemo outweighed the benefits.
(and when I did see the onc he did say that if my risk profile were lower he wouldnāt have recommended chemo for that reason - but that I was above the threshold where chemo is the best plan)
As Iām not a medical professional I donāt then understand the implications for herceptin, but I have it in my head that part of the way it works is to focus the effects of the chemo better onto the cancer (via the her2 receptors) so presumably if youāre better not to have chemo, the herceptin then isnāt going to do as much so youāre better not having that too (since it also comes with risks attached).
Hi. Iāve just joined this conversation. I have a single mastectomy with lymph node removal booked for the 18th Feb. I am petrified.
4 Likes
Hi @sue9 
I was scared too but I must say I am positively surprised! It was much less invasive than I thought and today I have no pain. Surgery was last Wednesday (22nd). Feels more like workout soreness. I went ahead with a silicone implant that was placed under the muscle and the result looks very good of course it might change over time but Iām so happy with the outcome for now. The placement under the muscle was needed since my nipple was removed and thus the silicone needed to not to be placed just under the skin.
This helped me:
I bought a huge U shaped maternity pillow for sleeping, a big shirt that opens in the front, and a pillow for the armpit (similar to this one) Amazon.com: GZFQJJ Lymphedema Axilla Pillow Mastectomy Pillow Cotton Post Breast Surgery Pillow Mastectomy Recovery Breast Pillow for Sleeping Mastectomy Underarm Pillow Armpit Pain Relief (4PCS) (Pink+Blue) : Health & Household
1 Like
Hello lovelies
@sue9 - A big warm welcome to you and let me be the first to say, welcome to the club that you never wanted to join but which has the best members. Please know that we have all been where you are and felt the same as you do now. It DOES get better. It will pass. There are very many of us and we walk this road together. You have done a wonderful and positive thing by introducing yourself. Keep talking to us as it really helps. We are a super friendly and hugely supportive bunch and we help each other through the bad times and celebrate the good. You are on the path. Yes, itās a road you never wanted to take but once youāve set off itās a heavily signposted route with people cheering you on all the way. You will get there. Big hug to you.
Re the Phesgo versus Herceptin thing, Iām wondering whether different Heath Authorities operating differently could also play a part?
@entropy - Like @naughty_boob says, I also remember others on this thread being in the same situation as you but Iām unsure how far back. @mrsjelly recently said it took her 4 and a half hours to read the whole thread so if nobody responds then that gives you some idea of how long it would take to find the info tops! Maybe one to keep at hand for a bout of insomnia.
@musestad - You are sounding really upbeat and positive. Thanks for sharing the good outcome. Itās important that we hear of what goes well in addition to sharing the tough stuff. I didnāt have pain after my mastectomy. The lymph node clearance was the worst bit for me but that was mainly because my initial consultant used a drainage tube that was way too large. I, too, have a tissue expander implant and no nipple. I really wish I could post a pic on here of the outcome because Iām genuinely really pleased with how it looks and I have no soreness. Iām just a bit stiffer on that side but still have full mobility and am doing dance classes.
I attended my office Christmas do on Friday which had been postponed for 2 Christmases until I returned to the office which I did at the end of December. For the first time in my entire existence, I drank nothing but sparkling water at an office Christmas party. Yes, I felt virtuous and had a clear head for my Drama classes in the morning (kids and hangovers DO NOT mix) but I somehow feel that the sparkle in the water took the sparkle out of the evening. My ability to drink has long been diminishing but after breast cancer treatment, itās now almost non-existent. Still, there are so many benefits to not being an old lush anymore and I intend to embrace them. Itās not like I have to look back and wish Iād partied more. I partied and then some. Itās a new phase in life and being healthy is more important than going nuts at an office party. Also, I had an unfortunate habit of flashing after one too many in days gone by and I donāt think I could entirely trust myself not to insist everyone witnesses and appreciates my brand new boob firsthand. Oh dear noā¦. at 54 that would be very bad indeed. I think Iād best stay teetotal at future office socials too!
Happy Monday all
Salbert
xx
5 Likes
Me too - exact same procedure but on the 6th Feb. Huge hugs to you x
3 Likes
Hi guys - Iām having an SMX with node dissection and expander placement on the 6th Feb. Petrified!
How did everyone find expanders? X
3 Likes
All the best to you with your procedure. When weāre you diagnosed, I was diagnosed on the 23rd December, and the waiting until 18th Feb is worrying me that things are spreading.
2 Likes
@sue9 Welcome to the group of fabulous people. Iām sure your team will have considered how long you have had to wait from diagnosis to surgery. I was diagnosed on 15 May 2023 and had my operation on 5 July 2023 as I needed extra scans and biopsies to confirm a bilateral diagnosis. Are you having chemo and Herceptin/Phesgo?
@jessybessy We will be there for you on the 6th. @salbert has an expander so read her posts.
@musestad Iām so pleased your surgery went well, rest and recover. Be kind to yourself.
@salbert i couldnāt imagine you as being a wayward drunk that you might flash people 
. Just back from an overnight stay at the wonderful St Brides Hotel In Saundersfoot. Had a thermo suite and hydrotherapy infinity pool session, the pool looked like you were at the edge of the sea. It was rather chilly although the water was warm in the pool. We had a Sunday lunch in The Cliff restaurant overlooking the sea and had a mocktail, a Virgin Raspberry Fizz. It was delicious. The food was good apart from the beef had to be sent back as it was still mooing!
3 Likes
Did you have levels 1,2 and 3 removed or just 1 and 2 which is standard?
Hi @jessybessy - I am very happy with how the expander has worked for me. Iāve gradually had saline added to pump it up to match my other one and now it is the same size. I can DM you a pic if you want to see how it looks. I know itās probably useless to say donāt be petrified but it was really all ok. You will be fine. This is a very routine op for the people who will perform it but thatās not to invalidate your fears. I fully sympathise as I was terrified for my first op. By my fifth I was as relaxed as I would have been on a trip to the hairdressers!
@sue9 - Weāve all worried that itās spreading while we wait for treatment to start but I was assured by my original team that it doesnāt move that fast. Itās very common to feel that way. The wait is horrendous and you have our full sympathy. We all know that feeling.
@Linda_Corinne First of all they just took three lymph nodes and two of them were cancerous so then they did the total clearance but no further nodes were cancerous. So theyāre all gone now.
@naughty_boob - That sounds amazing! I think I need to book something like that in. I think we all do. And yes, itās hard to imagine me as a wayward drunk, Iām sure! 
1 Like
I went for my first Phesgo only injection after finishing chemo beginning of January. Anyway when I arrived I found out my oncologist has changed me to herceptin only. I am sure others have said this also happened to them but I was suprised. Letās see if the side effects are less. I know others have said the injection only is much easier than chemo so hereās hoping 
3 Likes
Thankyou. 
I love the fact that we are such a chatty lot but my word it means my poor peri menopausal /chemo addled brain canāt catch up when I havenāt posted for a few days 
@salbert definitely the squeakiest wheel that gets old and we can assume if it squeaks itās probably rusty too 
ā¦ @hlc Iāve been told no ct scans too ā¦ it does leave me feeling anxious as Iād like the assurance everythingās gone but just have to cross fingers I guess ā¦
@musestad Well find on ticking the surgery off ā¦ now rest rest rest !
@jessybessy I was terrified too back in September before my surgery but . it was fine ā¦ my team were lovely ā¦ I went to sleep and woke up what felt like five mins later ā¦I wasnāt in pain either which was lovely and had only minimal discomfort after the surgery as I had a nerve block injected in theatre .
Iāve been busy working ā¦ husband goes out on bookings but I still have all the āofficeā stuff to do ā¦ I had my echo last week which Iām told was fine and bizarrely my EF has shot up to 68% !
We travelled Up to Deganwy at the weekend to view the Reno project weāve just bought . I must be mad but itās a sweet little arts and crafts bungalow that will be just gorgeous when done ā¦ two mins walk from my aunt and five mins from my mum ā¦ If all goes to plan we will relocate there in about 18 months ā¦ Iād be under Glan Clwyd up there and personally have more faith in the N Wales cancer centre based there than I do in my current hospital in the event of reoccurrence
3 Likes
Hi! Yes that would be super thank you if you donāt mind? X
Hi everyone. So have finally managed to speak to onco after post chemo MRI results.
The MRI showed that my lymph nodes have (hopefully) resolved but that the total extent/surface area of my small, but wide reaching, multicentric tumours (HER2+/hormone neg) hasnāt shrunk as much as sheād hoped. Overall, itās shrunk everything by about 61%. The first three seemed to do a lot more than the last three, which only shrank everything by about 11%.
I think my onco was a bit harassed/very busy today and had to deliver some bad news to someone earlier in the morning, so didnāt seem as upbeat as she usually is. She did explain that what is showing up on the MRI could just be scar tissue or inflammation (which many of you have also said).
She explained that if what remains is residual (and that Iām at a high risk of recurrence) then I will go on Kadcyla for a year. H&P if complete response. She essentially said that she canāt comment on anything until pathology from surgery comes back.
I think theyāre a little confused as none of the little tumours are palpable by hand (and havenāt been since the first round of TCHP, which seemed to have such an instant effect). My boob also had an inverted nipple before treatment started, which has resolved itself, etc.
Am having an SMX with expander placement next Thursday. Just feeling super deflated at the moment. Really want to be able to move on feeling that this is a horrible nightmare I will wake up from one day, but am not really feeling that right now.
4 Likes