So I was diagnosed with grade 2 IDC er + and her - on June 25th. Since then I’ve had numerous tests and was finally booked in for lumpectomy and senitol lymph node on Friday 27 September. However, I got my gene results back and have the PALB2 gene so makes sense for me to have double mastectomy with immediate reconstruction as high risk of it coming back.
Only issue is I’m like to be waiting another 3-6 weeks, potentially longer.
My surgeon is a man of few words and not very helpful so I don’t know what to do. I’m scared it’s growing.
I have my plastic consultation on Wednesday and then see surgeon straight after as need to confirm if I’m going ahead on Friday.
I’m also worried about lymph nodes. Nothing showing but want to be 100% so could just do a lymph biopsy but then I’m wondering what’s the point, should I wait if I’m waiting anyway.
I’m totally confused and don’t know what to do, anyone have any thoughts, been through anything similar. I’ve been waiting three months already.
I’m also concerned what my reconstructed boobs will look like. The images on google don’t looks great.
I’m thinking about asking to go on tamoxifen while I wait or have lumpectomy while I wait but I know he’ll shut me down. Can I insist?
Hi there. I haven’t been thro anything similar (because actually it took months to even get them to do the gene test and I am still
waiting for the results).
But for context, & in case it’s helpful to you my experience (Grade 3 IDC ER+ Her2-), surgery (single mastectomy with auxiliary lymph node clearance) followed by referral to oncology who have done my gene test and got me started on chemo. I found the surgery really easy to recover from, was pleasantly surprised (I will be having radiotherapy so delayed reconstruction, which as I understand helps recovery). I was diagnosed on 19th June, surgery a month later in July & chemo due to start beginning of September but was somewhat delayed due to getting ill.
I would recommend talking through with one of the MacMillan nurses on the helpline (there is of course a breast cancer now helpline too but ive not quite worked out their opening hours!).
Hi @jnra
I had a mastectomy with immediate Diep + implant reconstruction last year (with left side reduction). For various reasons, the wait from diagnosis to surgery was just over 5 months… Because of the delay, my surgeon put me straight on letrozole to control my tumours, I had an upfront SLNB and I also had regular ultrasounds to keep an eye on things. Although I had significant multi-focal tumours, (all invasive grade 2) my surgeon was confident that with these added measures, the delay wouldn’t have an impact. I was lucky that he was very thorough and talked me through it all. If you’re happy to wait for your major surgery, I think you’re right to consider being put on tamoxifen and to have your sentinel nodes taken in the meantime - this is a quick and relatively minor surgery and would give you peace of mind - it certainly did for me. But this certainly isn’t an easy decision, and it’s one only you can make. I’m so sorry you’re having to make it in such a short space of time and that your surgeon isn’t one to discuss things in depth. Have you talked to your BCN? xx
I totally understand the wait especially as the mind can go in all directions, but this is standard and most of these cancers are slow growing. But I get it and felt the exact same as you.
I had a bilateral mastectomy and was very surprised and pleased about the reconstruction and back in bikinis that same summer. I went for an implant with a mesh to give the implant a natural look. Scarring was very minimal too. Plastic surgeons make the difference here and it’s all incredibly neat. On recovery as long as you follow their rules and manage the drains well and do the exercises it was a very fast recovery and I was back in work in six weeks. In ways how you are feeling now is the hardest part.
They will identify the lymph nodes after the surgery and this is a hard long wait. I would not do another biopsy in the meantime as it will disturb things further (which is best to minimize) and they will need to take 3 or more nodes to see. They could however do an ultrasound to see if they are enlarged as long as it wouldn’t delay your surgery.
I hope this helps. I think important to stress your concern at getting this done sooner to keep the pressure on as I had quite a wait too and having a date really alleviates the worries.
My MDT were unsure about chemo, and so they did an oncotype test (I was eligible as a 50 and under with no node involvement). My score was 18 and my oncologist reassured me that this indicated a reasonably low risk of recurrence and that I’d unlikely benefit from chemo Fingers crossed for you too!
Good luck - your team wouldn’t put you at any unnecessary risk. Take care xx
Please can I ask how long people are waiting in general for surgery from diagnosis. I have had so many comments about how quick everything is happening I feel “lucky”. My time line is
19/08/24 routine mammogram
06/09/24 get letter to have more tests on following week.
10/09/24 one stop clinic - mammogram, ultra sound and 3 biopsies and consultant said it is cancer at this point.
17/09/24 have full diagnosis of IDC stage 2, 2.4 cm ER+ and Pr+ and HER2-. lymph nodes look okay but they will take 4 sentinel. Told it will be lumpectomy, radiotherapy and endocrine therapy and come off HRT now.
19/09/24 receive op letter followed by other letters (dyes, rod injection etc)
So my week next week looks like this:
Tues 01/10 pre op appt and rod insertion
Wed 02/10 Merina coil removal at GP
Fri 04/10 radioactive dye and then op.
Bish bash bosh roller coaster ride, and I am grateful but surprised at the difference between everyone’s experiences. I know I have written it all cut and dried because that is how I am coping but obviously a zillion emotions and dark thoughts and worse case scenarios are rattling in my head. But very few tears. and I know everything can change in a moment and it wont be so cut and dried. I think the waiting is awful and I have barely waited a moment compared to some. Still cant feel the lump myself. Its too deep apparently but getting a weird gnawing ache where it might be. I just cannot believe I have breast cancer, like, how dare it?!
Hi @jnra I asked to be put on tamoxifen while I waited for surgery last year and the answer was no - I think something related to blood clots. I was very frustrated. I personally wouldn’t have pushed surgery back, I was really anxious to have it out, but as you are having reconstruction (I didn’t) I appreciate there’s much more to consider. Good luck, I hope someone answers all your questions.
You’re very lucky, I think it depends where you are in the country. It’s partly due to the number of women getting cancer but I also think my hospital admin is totally unorganised. I manage a lot of projects at work and I’m constantly thinking about how they can do things better. But I am also extremely grateful that we have free healthcare and I’m getting sorted.
I decided to wait and go for the double mastectomy with reconstruction. Just waiting for my date now.
Yes I agree the response to Tamoxifen pre surgery will be a definite no beause of blood clot risk. I had follow up surgery after my initial mastectomy and diep flap recon and had to stop my Tamoxifen I think for a total of around 6 weeks from just before surgery to after surgery
Fingers crossed for you too!