It’s a rubbish hand to be dealt at such a young age. Sadly there have been a few of you on this thread, but who are doing really well. It’s very good news that you have no lymph node involvement. There are definitely other women on here who are triple positive such as the lovely @belle1 and others who have had or who are having double mastectomies. In fact, just above you will read of @lynnc123 who had a double mastectomy in July and @jeml is having a double mastectomy a week before Christmas. I have said it before and I say it again, those of you going through this with young children have my utmost respect. You are forces to be reckoned with. I had a single mastectomy in August with a tissue expander and it was absolutely fine. I was surprised at how straightforward it was. These are common ops that the operating theatre teams do all the time and I’ve been told that by a friend who works as an operating theatre technician. You sound like you are doing all the right things. You are connecting with us on here, you are out walking the dog, you are eating well. The fatigue is to be expected on chemo so just make sure you get as much rest as you can. It’s great to hear you have a good support network. If you ask me, that cold cap was the worst part of it all! However, I am glad I persevered as now I have a very thick head of curly hair growing back. (When I say ‘thick head’ I am referring to hair volume as opposed to IQ, by the way.) I found comedy podcasts helped me to laugh my way through that particular discomfort.
Aw I found the chin strap uncomfortable too! I took paracetamol about 30 mins before putting the cold cap on and also took a hot drink in a thermal flask for the first 15 or so mins as it totally helps! Keep brushing your hair every day and wash 1x per week…. It feels minging at first but your hair adapts quickly and stops getting greasy:smiling_face: I used moogoo hair products for washing and conditioning, but there are loads of more natural and gentle products you can use. Look good feel better do online courses and one of them is a hair care one that I got good info from (or you can check out the cancer hair care website too). They recommended that if it does get more painful as your hair thins or you get patches, to try to keep capping and put a surgical cap on underneath the cold cap too. I did this for the last couple and it helped
You may or may not have a bigger shed about 2-3 weeks after as your hair will still thin using the cold cap. No one warned me about this and it was upsetting as I didn’t expect a bigger shed, so I defo think it’s better to get a heads up! I lost a bunch at once but it was even and not overly noticeable, and I continued shedding afterwards for a while then it slowed. I thought about shaving my hair after the first shed but stuck with it and am glad I did. It started growing back towards my last Docetaxel too☺️
Hello salbert, thank you for your message. Yes its not a journey any of us what to be on. But these threads made it all that wee bit better with all these amazing woman pushing through it. Yes hard work with children and taking all tbe support i can get to keep her entertained and me rested. Yes its really helpful to her people on there surgery stories and what they all had, plenty options out there with great teams to help with it all x
Thank you @belle1 i will take the the paracetamol next time and see if that helps yeah the chin strap was tbe worst bit tbh after the 15 mins. I will have a look at these products definitely worth investing in some, yes i have thick hair but have been warned about my side burns falling out as the cap dosent reach them. I have a couple of wigs to play about with just incase i shed lots but i think i will push on with it 🩷 xx
Welcome to the thread. So sorry to hear of your diagnosis especially being so young. There is a group for women under 45. Link below.
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 was bi lateral so had two primary tumours once Grade 2 ER+ HER2+ 20mm and the other grade 1 ER+ 0.9mm. I had a bilateral lumpectomy/ wide local incision. I was told the outcome was the same with that or a double mastectomy and I would be closely monitored for 5 years. I have larger boobs so it was an easy option, I know it’s not always possible if you are on the smaller size. Had I had the genetic risk I would have then had double mastectomy but I was negative. Many ladies on here had just had the one side operated on as that’s the one with cancer.
Until you have your next scans you won’t know what the best option is for you surgically.
I noticed you have started chemo, have you joined the monthly chemo starters group, link below
I also cold capped and kept most of my hair with shedding and two small patches, but it’s not for everyone.
Hello @naughty_boob thanks for your message i will look into these groups.
Yes my area is in my left breast and its over 60mm the invasice bit is in there so i have to have a single mastectomy on my left side with reconstruction because of the size of the dcis, so just thinking about doing it all at once and getting them both done, as im 30 im thinking better doing it now. But ive got time to think about surgery. But i think im set on having them both done, im waiting for my gentics to come back but i have 2 grannys that have had breast cancer 1 aged 55 and 1 aged 80 so both after menopause and my mum was 58 and was on hrt hers was hormone fed, so yeah just planning ahead for the future x
Hello @Nikks How lovely to hear from you!! You were one of the first people to answer me and give me the encouragement that I so desperately needed back in December. Everything is good with me, thanks. I’m so very glad it’s November 2024 instead of November 2023. How are you doing? XXXX
Hi shannon and sorry to hear you are here
I cant believe how many young women i am coming across! They defo need to lower the mammagram age i think.
Its good that you dont have node involvement, i did but chemo still got it out of my nodes and even dissolved the lump! So i have had a total response as they call it from a radiologist perspective anyway there was no signs of C left. I also had 6 rounds of chemo i had my last one 2 week ago. I hope you not too rough after your first round and you have the support you need i know how hard it is with little ones. Mine is turning 3 in feb.
I am having a double mastectomy on 18th of December so i will keep you informed. Not having recon straight away im going to wait a while i think. Sending love and positivty your way. You got
Thanks everyone for the replies about the mastectomy! Really appreciate it as always i dont click on every day, but this group is honestly amazing! I plan to do something super christmassy before my op, would like to go to a xmas market and indulge in the delicious food!
Not long since got over my last round of chemo and me and my Girl both got sore throats today and feeling a bit funky bloody typical. Hopefully it wont hit me too hard as im guessing immune system not 100% as yet. I have a very cranky toddler. So we having pj day and lots of peppa pig on tele with calpol and snuggles.
@jeml amazing you had a complete response. Have they mentioned radiotherapy to you? I have two more cycles to go but having conversations around reconstruction. I am also responding well so hoping I will have a complete response (manifesting that) but options for reconstruction less of radiotherapy needed. Just wondered as you are ahead of me whether they had spoken to you about this? Of course you may not want reconstruction so ignore me if that’s the case.
I am having radiotherapy because i was node positive. But reconstruction straight away and radio after can cause them to go weird shaped etc. Did they speak to you about this? I decided i do want recon but not straight away i might wait even if its a year or so before going down that route.
Well i had a ct scan after my 5th round and no signs of disease was seen and my nodes was clear and normal. I know they need to test the tissue once its removed from the op too. But feeling confident since my mri was clear glad you are responding well! Luckily for us i think our type does. From my first ever chemo about a week later i noticed my breast swelling had totally gone so that proper boosted me from the start.
I know i feel the same, they definitely need to lower the age for mammogram. There are so many young people being found with breast cancer.
Yes im feeling not to bad so far day 2 so just waiting to see how the rest of the week pans out, felt really fatigue on Tuesday after it all but so far not to bad.
How did you find your 6 rounds ?
Aw i will keepnin touch with the double mastectomy, i think i may have to do the deip flap on the left one side but im wanting to get the other side done as well even though its healty im not wanting to risk anything coming in the other side. Ive seen alot of people opting for a double, and i can understand why.
Wishing you well for your mastectomy, sending you love and positivity your getting there xx
Yes i totally understand why you want the double! The celebs get it done dont they. I had a scare after my mri scan at the start in other boob had to go in for biopsy but was benign changes… but i spoke to my surgeon last week and he was really understanding and agreed that a double will be for the best for me mentally.
I was same so tired after treatment my side effects usually kicked in around day 3 or 4. Make sure you keep hydrated and take your medication if need be to help you also nibble throughout day with little bits not heavy meals as it helps if you get sickness. I mean, its doable, i had a few rough days here and there but i knew it was to be expected. X
@jeml that’s amazing. I could never feel my lump but my surgeon could and she said it wasn’t palpable anymore when I saw her and my ultrasound after cycle 2 showed a 60% reduction so feeling really positive. I think our drugs are brilliant aren’t they! As tough as they are!! I didn’t have lymph node involvement originally but of course until you have the surgery I know they may not know for sure.
It’s so tricky all these decisions isn’t it!
Thank you for sharing your experience though it really helps to talk to others in the same position xx
Yes exactly i think going forward mentally i will definitely help, dont want to risk leaving it and something popping up in the other one. But i know everyone is differnet i just think being 30 i dont want to leave it.
Yes trying to do small walks with the dog and making soup, resting up as well 🩷💪
@jeml Sorry to hear you and your little girl have got sore throats. A sofa and Peppa Pig day sounds just the ticket. I remember a day like that when my son was a similar age at a similar time of year and we put his tent up in his bedroom and both fell asleep in it. It’s rather a lovely memory.
@galdiolus Talking of all things reconstruction, I have just been to see Kieran Power, the reconstructive surgeon, at Marsden this morning. I finished radiotherapy on 28th October and everything is in good condition so he is going to replace my tissue expander with a soft saline implant in April and give my other boob a lift. I used Flamigel RT and have been told that the results are as good as they could be so I recommend it. Happy to share info if I can be of help.
@shannon27 If I were you I would be doing exactly the same and opting for a double mastectomy. To me it makes total sense. Especially at yours and Jemma’s ages. Fantastic that the chemo is doing its job with you so quickly. Really great news.
Thanks @salbert yes i think that will be the plan going forward, thank you. Im so glad i found this page its helped so much over the last week just getting started and speaking with everyone 🩷xx
you look fabulous, hope all ok sweeti XXX
How are you doing? XXXX
i dont click on every day, but this group is honestly amazing! I plan to do something super christmassy before my op, would like to go to a xmas market and indulge in the delicious food!
bloody typical. Hopefully it wont hit me too hard as im guessing immune system not 100% as yet. I have a very cranky toddler. So we having pj day and lots of peppa pig on tele with calpol and snuggles.
