Same breast and same cancer (IDC ER+PR+HER2-). I did a lumpectomy, chemo and rads back then. Everything has been fine with no symptoms all these years until I sort of felt the scar tissue area thicker. I didn’t think much, but on my mammo it showed and everything started again. My oncologist immediately put me on Arimedex. My bone scan and CT were clear except for some enlarged nodes in my abdomen. He said he wanted me to get a PET scan just to be sure. I don’t have a single symptoms of mets from my reading. I am at a healthy weight, I exercise, eat right and feel no pain anywhere.
I guess my question is has anyone had another lumpectomy after the first time? It sounds like mastectomy versus lumpectomy doesn’t have a big statistical difference in recurrence. I’m guessing I can’t have radiation again, but was wondering if something less invasive is possible.
Hi there,
Sadly, a very similar journey for me. Diagnosed after my first mammogram in 2009 with a small but aggressive invasive tubular tumour. Had WLE, rads and tamoxifen for 5 years. Like you, I then noticed changes in late 2021 which turned out to be a larger lobular growth and had a mastectomy in Jan 22. Further less invasive surgery was never discussed. Onca test was below threshold for chemo and no further radiotherapy as maxed in 2009. Was prescribed letrozole for 10 years, really struggled with it and am now 3 months into exemestane, which I am tolerating slightly better.
I’m sorry you are also going through this. It seems so unfair. I’ve been on Reddit reading about others, but most seem to be 1st time ladies and young. The average age seems to be in the 30s. I was 46 the first time and they used to think that was young back in 2011. Now coming up on 60 and I am bummed that I have to stop and worry about this crap again. I think I have finally given in to the fact that I won’t have a lumpectomy again. I haven’t read a single thing that says saving my breast is even close to standard of care at this point.
How are you feeling now that months have passed since the mastectomy? I suppose missing chemo is a plus since I also did it and it may have killed some cells, but not the ones it really needed to or they just grew again. I’m glad you are okay on exemestane. I’ve only been on Anastrozole for a little over 3 weeks and so far so good. I suppose this might be the only treatment once surgery is done. Of course all of this is me banking on my PET scan to come up negative.
I’m about to have another lumpectomy on the other side 13 years after my last one. Only bonus is surgeon says I shouldn’t need chemo this time just radiotherapy then tablets….
For me it’s facing this crap again and the psychological implications. Had many “why me” and “it’s not fair” days but just want to get it all out of the way now. Sending love and happy I found this forum
I’m with you 100%. At first I was angry and felt like breaking things, then I accepted it and began to feel more calm. I’m glad you won’t need chemo as the entire experience just takes so much out of us. For me it was going into menopause so fast it made my head spin.
I find myself looking at everyone’s breasts now wondering if they are real or reconstructed. Very strange for a 59 year old lady :-). The Arimidex hasn’t been bad at all for me. The Tamoxifen 13 years ago was so bad I opted out. I guess since so many years have passed it seems like it may not have helped anyway. I wish I could get another lumpectomy. I really don’t want to be cut up, but I have resigned to whatever has to happen will. Wishing you the best. When is your surgery?
I have my pre op tomorrow then surgery on the 16th. I took tamoxifen for 5 years and that along with the chemo pushed me through an early and fast menopause as I was only 44. Our bodies take such a hammering with all of that so I’m hoping whichever medication I end up on doesn’t have too many side effects as I’ve heard varying experiences!
I hope your appointment went well. I found (so far) that using the Arimidex is nothing like the Tamoxifen was back then. I don’t know if my body is different or perhaps my mind. I hope it will be the same for you. I think back in 2011 when it was time for me to take the Tamoxifen I was just so beaten down from everything else. The psychological twists and turns make this so hard. I’ll be fine one moment and then feel massive anger then back to calm. Not sure how I will handle this throughout.
Well, my calm didn’t last too long. The PET scan came back and shows activity in my abdomen. Every scan so far has show nothing in all the typical places. No bone, lungs, liver or brain mets. The fact this one area lit up 3x stronger then the cancer in the breast makes no sense. Doctor said sometimes they find a completely different cancer that is unrelated. WTF. I’m 59, strong and healthy without even a sniffle. I am so ticked off today I want to scream. Now I have to have a biopsy and have them sticking some needle in my belly. This morning I felt like none of this was worth it. Sorry for being so blunt.
I’m so sorry to hear this…… not been on here for a week or so as been recovering from my op. It’s not the news you wanted I’m sure. Sending so much love
Hi, I am like you with a diagnosis of early bc and treated with WLE, radiotherapy and Tamoxifen that I took for 8 yrs. Stopped in 2021. No node involvement. Mammogram in 2024 showed an area of concern and lo and behold a recurrence on the same side. So had a left side mastectomy and again nodes clear. On Letrazole now since July 2024. I am now 60 yrs.
Hi max7464. I also had a wle, radio & tamoxifen for 5 years. All good for a further 5 years and then I noticed a change. BC returned, same type & place. Had to have a mastectomy this time. Lymphs were again clear, so felt v lucky. Am on anastrazole now for 5 years. Im 60 this month. Still adjusting to the new me if Im honest…Hope you are doing ok
I feel like they have so little information about how to keep this crap away. I always figured the further out we were, the safer we were. Nope, the studies show for ER+ our chances of it coming back increase. Bet they don’t share that a lot with younger ladies. Can you imagine if someone told you after 5 to 10 years you percentage is just going to keep rising to hold tight?
Sorry, I’m still ticked off with knowing the rest of my life will be dealing with doctors again, meds and the like. Did you have reconstruction after the mastectomy? What type if I may ask? I’m trying to figure out what my next steps will be should my abdominal biopsy come back negative.
Hi Suzie, glad you are doing well. Did they say what happens after the 5 years? I can’t find stats for how long we have to take the AI and how much extra protection it would give us. I see a bit on first timers, but 2nd rounders seem lost in the stats.
Hi Rockym. So an implant was a no go for me due to impaired blood supply to the area caused by radiotherapy 10 yrs ago. I was offered a reconstruction but the waiting list where I am is 2-3 years. Tbh, Im going to pass as feel my body has been through enough. Ive no idea on the stats for second time around on AI. All I was advised was to take them for 5 years again. Guess its hope for the best after that…unless something better comes along! Hope you get some good news about your scan x
I’m sorry there is such a long wait for reconstruction. That’s crazy… where do you live? What are you doing in the meantime?
I did get good news today on my recent biopsy. The PET scan that lit up with the biopsy to follow shows no metastasis and nothing abnormal. I am way happy, but of course now it’s back to dealing with the local recurrence.
Hi Rockym. Thats fantastic news about your scan! This journey is quite a ride isnt it…I had a scan which showed nodules on my lungs. 6 months later, a further scan, & as no change left well alone as they dont look suspicious. So as far as the recon goes, I just wear a prosthesis in a comfy mastectomy bra & sometimes the “softie”. At home usually bra free tbh. I live in Dorset btw, where abouts are you? Are you considering a recon? I am going to pass buts its a personal decision isnt it. Just had letter yesterday for 1st mammogram as its coming up a year. Feeling twitchy
I had a implant didn’t work out so gone flat right hand side , couldn’t face recon surgery , I use a softie and various other prosthesis and knitted knickers which are great x
