I wanted to write and thank everyone on this thread as I’ve found it incredibly comforting since being diagnosed triple positive earlier in the year. It’s my first time posting, but I’ve been doing a lot of reading!
I was diagnosed in London in April (which is how I found out about this great forum) triple positive, Grade 2, 2.3cm and have since found out I have the Chek2 gene. I’m 42 with a 5 and 8 year old. I am from Australia and after my diagnosis we came back here for treatment.
Currently close to the end of neo adjuevent chemo/phesgo which I’ve found incredibly tough unfortunately and deciding on what type of surgery I will have at the end of September. Definitely a mastectomy, probably bilateral, but deciding between aesthetic flat closure or endoscopic nipple sparing mastectomy with implants. (Have started a topic relating to this as I can’t really find any people with experience of the endoscopic mastectomy). ’
Anyway, it’s been so helpful reading everyones posts and experiences during what has been a rollercoaster of feeling rough and terrified and also amazed at community and what the body can cope with - so thought I should join and give back where I can.
Hi there. So sorry to meet you under these circumstances but good to hear you’re getting treatment and that the forum has been a help.
Good luck with your surgery decision. I feel sure the surgeon and BCN can give you all the info to help you make the right decision for you, but of course there’s nothing better than hearing it from people who have been there.
Hi and welcome to the thread. I’m so pleased you have found it helpful and really happy you have decided to join us.
have you heard of BRCACHAT which supports those with gene mutations including Chek2. You might be able to find someone who has had an endoscopic mastectomy
Also BCN has a Someone Like Me service which may be able to match you with someone who has had this surgery. Aswell as the wonderful nurses. I have so added Younger Women together that offers specific support.
Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
I find the forum invaluable for myself and helping others but a local support group, that I only joined last year has been so fantastic. So many ladies with difference diagnosis , treatment plans, surgery etc , they are going to start, with permission , a data base so they can match up ladies who have a similar journey for support. See if there is a group near you.
@rhombusrhombus just wanted to welcome you to the thread. Great info from @naughty_boob , best wishes with your surgery decision. I think we all found that one tough.
I’m posting this from the cafe of the Blue Lagoon on my last day in Iceland. I didn’t find the confidence to join my daughter and son in law in the geothermal pool, given my AI induced stiffness I’d probably drown! However it hasn’t stopped me doing anything else this week including lots of walking and the awe of watching a hump back whale at close quarters yesterday! Love to all
@Jaygo The surgeon is very excited about this type of surgery (Endoscopic Nipple Sparing Mastectomy) as I think it is a fairly new technique which is why I can’t find many people who have had experience with it. He has performed them before, but I think he would like to do some more, so I feel his opinions are a bit skewed towards this surgery. Though he has said he is very happy for me to go with the aesthetic flat closure if that is my preference. I see him again tomorrow to discuss further.
Hello and welcome to you @rhombusrhombus. It makes me so happy to hear that our merry band have helped you through and that you are now ready to join in and share your hope and experience with others. Thank you so much for that. I had not even heard of an endoscopic nipple sparing mastectomy so this is all interesting info. I have just looked it up and it sounds like pretty impressive stuff. I have scars all over the place so I guess yours would be minimal if you go for this. However, I love all those women who go flat and then do things like run the London Marathon bare-chested! Not suggesting for a minute that you should be thinking about it but the public celebration of survival and rejection of shame bring a tear to my eye. Talking of which, I MUST post a pic of my nipple tassel tattoo now that it has healed. I’m at work at present and have found that whipping it out tends to make men yell and hide their eyes. So funny! It makes me want to continue to flash. I think we would all be really interested to hear what you decide and how you came to that decision.
I went to my local pub’s summer party on Saturday night and it was the 80s band again that came last year. I danced all night. By all night, I of course mean from 8:30 to 11:30pm but I could have gone on. I share this because once again it makes me realise how far I’ve come and fills me with gratitude. I’m grateful for the energy, the health, my body’s ability to heal and getting to feel like I was 15 again. Heavens to Betsy, did I suffer for it on Sunday. It was all I could do to order a curry delivery but it was worth it. My wish for you all is that everyone gets to dance again to the music of their teenage years. It does the soul immeasurable good.
It’s quite amazing to hear from everyone on this forum as you are all kind of like characters from a book I know really well and it’s kind of exciting when someone writes to you! Like the character is coming out of the page!
@salbert If I were a runner I certainly would aim to be a topless marathon runner with my lovely aesthetic flat closure! I was pretty certain that is what I would go for until the surgeon presented me with this other option. It does have minimal scarring, and often they can go straight to implants with this technique (not always) which is also appealing if it ends up being possible. My surgeon proudly showed me a photo of one he had done recently, and I have to say it was impressive!
Anyway, lots to consider, I’ll have more info to help decide after I see the genetic counsellor tomorrow and the surgeon again next week. I know so many of you have already made these decisions but my goodness they are tricky.
So glad to hear you have been dancing!!! Such an inspiration - right now I can barely walk from the bedroom to the kitchen, I can’t imagine going out dancing, but it’s nice to know it will be possible again!
@rhombusrhombus You will dance again. Give it time. You will start to feel better once you finish chemo/phesgo, although I appreciate that it is probably hard to believe at present. I hope you get some helpful information from the genetic counsellor. Hey, you are now a character in the book!!
Well done @naughty_boob for passing that milestone, ‘bench’ moment. Thank you too for all the wisdom you’ve given us from your experience along this path, perhaps we should call them ‘ benchmarks’.
@naughty_boob Yeeeee-haaaaaaaaa!! I’m so happy to hear you are through. After all these years. Slap that bench!! I will be through come January. We have really walked this walk together and thank heavens for you and your amazing gift for information. I swear you are a walking encyclopaedia and you going through this awful experience has actually benefited so many others. I thank you on behalf of many. Blessed you came into my life. I pray next week’s biopsy comes back ok but please do let us know. I want this awful period to be over for you.
Have a great weekend all. We are getting our last campervanning weekend in down at Ford before I start teaching again from next Saturday. I may have to go and check out the Arundel music scene as recommended by @Jaygo
I haven’t posted before but would love some thoughts from you all
I’ve just had a visit with my oncologist. I recently had a mastectomy to remove DCIS and they also found a small 5mm idc grade 3 Her+ Er- with no node involvement. It puts me right on the cusp of needing further treatment of the chemo /trastuzumab combo. Old Predict says 1 in 5 women will get recurrence and although new Predict says less my oncologist thinks the new Predict numbers are slightly optimistic so they don’t use it yet.
I’m 53 and a woodworker so I’m really concerned about neuropathy and have a bad needle phobia. But obviously I’m also concerned by the numbers and don’t want to have any future regrets, either way! Such a nightmare to make a decision
So I’d really appreciate the thoughts from people who’ve been through it
If it was me I would want to know what the oncologist thinks is best. They are the experts and see the data and treat many patients. For me if it gave me the best change of survival and reduces recurrence risk I would take the chemo/herceptin. As I have said many times, it’s not nice but it’s doable. Everyone’s treatment plan is individual and if you read this thread you can see thee many be some of us on similar regime but it will be adjusted by our weight, our existing health issues and family history. They can adjust your dose to minimise neuropathy. During my treatment, I mentioned the numbness and tingling and they were only concerned if it was permanent and persistent. My issues resolved after finishing. I occasionally get tingling in my fingers and that is from ulna nerve damage on my elbow not the chemo.
Therefore new Predict has been around for sometime but not been adopted by oncology teams. It does take into account other treatments such as Zolendronic acid/Zometa and some other things and has had more years of data input to change the outcomes. If more people are surviving longer on the newer treatments available it will take time for this to show. Last year I met a lady who was one of the first to receive Herceptin in the UK, this gave me so much hope. She had to fight to get it as the criteria was much tighter. I believe the NHS only started using it in 2006, just 20 years ago and the injections started in 2013, 13 years ago. It will take some time for the data to feed back.
There are also many things you can do to help with neuropathy, such as compression and cold therapy. The Christie in Manchester was trailing leg cooling when I was being treated in 2023 as one lady was using it on the chemo starters thread. I also used cold capping and saved most of my hair. Others on here and the chemo starters groups have used cold packs during treatment as it’s believed if you are cooled it will help prevent the neuropathy. I was able to cool at home with frozen slippers and cool packs. Unfortunately due to travel time and facilities I wasn’t able to do it at the unit during the infusion.
For needle phobia they would probably suggest a PICC (periphally inserted central line) that stays in your upper arm during your treatment. It’s a plastic tube inserted with a local anaesthetic. It gets flushed (cleaned) and dressed weekly and blood can be drawn and infusion can be input without extra needles. It’s not without problems, not getting it wet, etc. After a week or so you generally forget it’s there. The other option is a port inserted into the chest. I can’t comment as I didn’t have this.
I believe I have spoken to you before and mentioned this thread, so sorry if I have repeated myself.
I’m sure some other lovely people will comment on your post soon.
That’s really helpful info.
My oncologist said it’s down to what I believe is best for me in my gut. That’s it’s how much risk I’m ok with - whether I want to just get on with my life and hope that I’m one of the many that didnt need the extra treatment after surgery, or potentially reduce my risk of cancer coming back by having the chemo and suffering the side effects and 3 months of being a bit miserable!
At the moment I’m also veering towards treatment as I think I’d struggle with regret if it recurred and I hadn’t tried it.
Has anyone else tried the cold mitts?? My oncologist thought that there wasn’t much evidence to show that it helped?
This is my first time writing on this thread after being recommended it on my first posts in the friends and family section.
My mum was diagnosed with Invasive Carcinoma (No Special Type) Grade 3, ER negative, PR negative , HER2 positive. She’s 53 and it came as a massive shock to us both. She went for an MRI on Sunday - we got the results yesterday and thankfully the cancer hasn’t spread anywhere else. It’s just the one 2cm lump in her left breast.
At our appointment the doctor explained that mum has two options:
First option is to start chemo first and then go for surgery to remove the cancer. The chemo for this option will be more intense but could reduce the size of the lump meaning less removal for surgery.
Second option is to remove the lump straight away and then do chemo after. Chemo for this option will be less intense apparently?
We have an appointment with an oncologist on Thursday next week to discuss the options but ultimately it’s my mums decision. Just asking you lovely ladies if anyone else has had to choose between these and what your thoughts are? It’s so hard to decide to do and to know what’s best… part of us thinks it best to just remove the lump and the cancer immediately- but then how much breast tissue will actually be removed? Or is it best to go the more traditional route and go ahead with chemo first?
Please let me know your thoughts. I’m trying to get as much info as we can before speaking with the oncologist.
@wizzer yes I am using the cold mitts and feet suzzies I think the brand is my husband bought them. One of the consultants bought two of his nursing staff them and they had no issues so thought would try them.
Only had one session due to my blip I put them in 15min before the chemo starts very very cold like the cold cap however get some one to distract you, you get through that first 10min.
It’s a new thing I believe but there is evidence it does help some cases x
@lg1206 hello I am in my 40’s stage 3 HER2 the way it was explained to me was the chemo first reduces the lump to nearly nothing they are no at the stage for no surgery yet but they believe in time that leap will come. By reducing the lump in my case they can focus on the lymph nodes that have to come out then remove the seed that they put into the lump and surrounding tissue this makes it less impacted the type of operation hope this helps xx
Benchmarks. Very good
