I’m 48 and was diagnosed on 20 May with IDC grade 2 er+, pr+, her2- 12mm in the right breast and in one lymph node that we know of - plan was lumpectomy and approx 5 nodes removed. Appt yesterday after my MRI shows it is closer to 30mm and given the size of my breasts I now have to have a mastectomy with option of implant which I think I will have, plus 10-12 nodes removed. Tomorrow I have bone scan and CT scan to see if it’s spread anywhere with provisional surgery date of 25 June. It’s all just so overwhelming and I can’t seem to get a straight answer about whether I’ll need chemotherapy or not. The waiting is just so stressful.
Do most people under 50 with lymph node involvement have chemo? Also any tips or must haves for post surgery? Also, has anyone had the Motiva implant? Thank you, the support on here is invaluable.
I’m so sorry your plan changed. It’s such a scary time waiting for more tests and waiting for treatment to start. Until they have had a good look at your lump and lymph nodes in the lab after surgery it’s impossible to know exactly what your plan will be after. From what I’ve read on here it does seem that when lymph nodes are involved chemo is often required but there are so many variables and treatment is so personalised you just won’t know until you get your histology results back.
I completely understand that you are trying to look ahead and predict what’s coming but if you possibly can try an focus on what’s next. I believe you have some more scans? This also equals more worry so try to find ways to keep your mind occupied or little treats to be kind to yourself. Then there is your surgery. I had a different surgery to you so hopefully others can give you some good recovery tips but mostly be prepared to need lots of rest and TLC. I was terrified of surgery but the fear was worse than the actual recovery.
You’re in the worst bit right now, the waiting. But you will get through this and we are all here for you x
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I’d estimate that its highly likely you’d need chemo. Sometimes, they give chemo prior to surgery when its known lymph nodes are involved (neoadjuvent). If pre, menopausal its even more likely.
They may be waiting on an oncotest which gives an idea on need for chemo. Its not inconceivable that your plan could change futher based on that result. A step at a time is all anyone can do. My lump was bigger after surgery and also had unseen DCIS, mammograms and USS can miss things and an mri is better. I didnt have one as no node invovement, so it was all found in surgery.
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Twinks has it spot on - the waiting and changeable plans are a doozy. Im 42, 20mm removed as lumpectomy, and again as they werent happy with margins. No node involvement so it was going to be radiotherapy and hormones. Then bam - oncotype score came back as high risk of recurrence and chemo was a thing. And it knocks you sideways. But now that’s become my new normal and im 2 rounds in. Next up my brain has already started wondering about the gene testing that hasnt been done yet. So, if i have the genes do i do all this then opt for double mastecomy? Theres an injection i need too, zoladex…that should minimise recurrence too, when will that happen? Have they forgotten? Then radiotherapy. When? Will anyone ever check my whole body to make sure theres nothing hiding elsewhere? What if its already camped out in my liver or something? Why is no one checking? BRAIN EXPLODES
Its almost like the moment this BIG C happens you want a map of every single bit of your body to be sure there’s nothing lurking and i think thats normal - suddenly something we had trusted or taken for granted (our body) has been shown to be harbouring nasty gremlins that need to be gotten rid of, and we all have to adjust how we see ourselves and our lives going forward. I think this part of the process, changing plans and questions and haunting thoughts, are totally normal. We are all adjusting to this new normal where things are scary and we want control back. Its a trauma - like the difference between driving one day going about your business, and driving the day after your car breaks doen…its hard to drive fancy-free again for a while after the scary thing happened and youre not a mechanic so you cant check if all is okay but you still have to drive the damn car. 
Try and keep your chin up, but also cry and rage too - no feelings are off the table. Take each day as it comes, some will be harder to crack on with than others but we’re all here. Start noting all the questions and push back to whoever your current medical person is for answers that make YOU feel better. xxxxx
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@twinks77 thank you so much for such a helpful response! You’re so right I’m trying to plan my life and prepare for the worst as I’m definitely someone who likes to plan and be in control - I’m very quickly realising I’ve got no chance of doing this.
I’ve just had two really crazy busy days where I’ve had both the scans and pre op assessment and measurement for the implant and meeting with BCN after aftercare as my surgery is now pencilled in for next Wednesday! Suddenly everything is happening, which in one way is good, but it means I’ve just stopped trying to predict and just going with it. The only saving grace to all of this change is that I won’t now have a drawn out wait for CT and bone scan results - if there’s a problem I’ll know by Monday. This whole thing changes your life in so many ways 
once everything was done we just grabbed some stuff and headed to the coast so I can just try and have a normal few days xx
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Thank you @entropy I think that is what I’d understood about chemo, and my BCN said similar but the consultant is still 50/50. Again it’s just about trying to plan my life but I think I’ll just accept it’s on hold this year as I know it and we’ll have a different kind of normal. It’s so hard on everyone around me as they feel they have even less control than I do!
I should know very quickly if my plan changes again as I mentioned above my surgery is now pencilled in for Wed next week. If anything is found on scans or any further lymph node involvement it may have an impact.
@fancyhooves you are so right, thank you for summing that up so well 
my brain is constantly in overdrive and I’m just napping more now as it seems the only way to turn it off for a bit! Stopping HRT has also had an impact as the anxiety feels even harder to control and so now I’ve started on Sertraline which is keeping things a bit more even.
I’m very lucky as I’m surrounded by people who support me very well and are happy for me to say exactly what I’m thinking, to cry, to be frustrated - I don’t have to protect them - my mum and husband are with me every step of the way. My boys are in their early 20s but I try and keep the worst of my feelings from them as it’s always my job to protect them - but they are also very supportive and try to keep things as normal as possible! X
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Thats wonderful - the support network is vital and yours sounds perfect!
Im glad the dates are so soon, just start stepping onwards. I didnt have mastecomy so I dont have experience of that part but the lumpectomies were honestly very straightforward, and filled with care from the team. The NHS need all the pay awards we can squeeze out as far as im concerned!
Enjoy the coast - i do the same as we live the sea. My whole perspective goes calm there. Also - fellow sertraline queen here too.
Keep us updated as you go with scans and surgery. Xxxx
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