Breast Cancer Now Forum

Hi Jo,  So sorry to hear you need the 2nd surgery. I really feel for you. I had the same with about a month between surgeries (May, June) as my tumour was at the edge of the path sample. It felt like a backwards step to me at first but the best & brilliant news is your nodes are clear.  So I tried to think of it as a really rubbish side-step having already climbed a mountain and made awesome progress. My understanding when they go back to do a ‘shave’ is that it is a tiny amount and if it is DCIS that doesn’t increase calculated tumour size or make it more likely to need chemo.  Like you I was offered mastectomy at that stage but also offered another WLE. And a definite mastectomy if the margin couldn’t be cleared a second time. The surgeon said I could change my mind at a later date if I couldn’t live with having breast preserving surgery and if I was very concerned with recurrence. My breast unit only does the implant reconstruction without other options ( they told me that there are different options available at larger centres) Such an individual decision and I’m aware how one can’t always self-check for Lobular BC.  At this point I needed to trust the multi-disciplinary team and decided that they wouldn’t have offered the 2nd WLE if it didn’t have a good outcome.  They offered the OncoDx Test but refused to do it until after the 2nd path report was in.  I didn’t know what the second surgery would involve. The surgery was shorter in duration and at least I knew the hospital set-up. I found physical recovery was easier as they didn’t touch the armpit so I could keep better mobile. Mentally I found it much tougher (am thinking of that 3rd picture in the cartoon!) and I wasn’t as physically active ready for the second surgery, totally my fault.  I made a massive effort in the small window between surgeries and self-isolating to catch up with my closest people (in the garden, at a distance) but clearly was very cautious as the last thing I wanted was any delay due to Covid.  Again there was no firm decision about the benefit of chemo throughout all of this. It felt to me that my whole life was on hold and I had a lot of anxieties about expectations to return to work. I sought counselling at this point which has helped me stop darker ‘What if’ thoughts but also has let me go with my feelings when it feels right. (I used Breast Cancer Haven for counselling, who do sessions by Zoom). I honestly think with little steps and support, you will get through anything.  My understanding is that in NICE guidelines for follow-up of Lobular disease there is a recommendation for annual MRI (in addition to mammograms) which should be reassuring.  My surgeon has not agreed to this yet so if it is not available next year then I will ask for a second opinion referral. The OncoDx score came back low-ish so they didn’t offer chemo. The adjuvant treatment is our future protection so I’m working hard on the half-full. Started Tamoxifen and RadioT starts this week.   Sending best wishes and thinking of you x S           ... View more

Hi, I’m new to the forum. Reading your thread and thinking of all the hideous waiting and results. Isn’t that the toughest thing?  Re being without your partner for appointments and results, do you FaceTime or Speaker-phone them in? I was diagnosed very early in lockdown and it was never suggested by my GP or Br Ca Unit. A medic friend ( who works at a different hospital) suggested it as she has done this for years and said she can’t see why every clinician wouldn’t want their patient to be best informed, be able to retain information and be comforted.  So I have hubby ready in the carpark or at his work &  dial just as I go into the appointment.  Prop the phone on the desk. He takes notes and goes through questions I had incase any weren’t covered. He sometimes asked for clarification of a point. My surgeon is fine with this but I get the feeling I’m the only patient she has who does this.  I don’t have him ‘on’ when chatting afterwards to the Br Care nurse, but it was a game changer for the consultant appointments.   Maybe other units already do this? I just haven’t read anywhere about it being used.  Best wishes to you,  S.  ... View more

Hi Tricia,  Also diagnosed during Covid. I agree 100% Hideous getting diagnosis and appointments on your own. Have you thought about using FaceTime so a friend/ partner/ relative is ‘with you’ during your appointments? Or just your phone on speaker? It wasn’t given as an option to me by the GP or anyone in my Br Ca Unit but a medic friend ( who is an Oncologist at a different hospital) says she has always used it to allow relatives and friends to support the patient. So now I have my partner ready and I dial in as I get called in to the appointment. Prop up the phone so he can see the clinician. He takes notes and checks that we have covered any Qus I might have. It’s been a huge help as there is no way I could have retained the information.  I read this thread as also have Lobular Br Ca. 2 surgeries for WLE, starting shortened 5fractions RadioT next week. Almost every step has been delayed and I really empathise with the uncertainty of waiting. Isn’t that the hardest thing? My understanding is that Lobular disease is slow growing so the delays are not significant to the outcome.  Still trying to get my head around it as I think the powerless feeling of this disease isn’t helped by having disease which you can’t self-check? Would recommend counselling sessions, early days but that is helping me to take one step at a time, feel some sense of control and understand that it is normal to feel changed.  There have been some beautiful rainbows in this storm that is Breast Cancer.  So many generous, compassionate strong women sharing and supporting each each other. Thank you & Best wishes,  S       ... View more