This is not my first rodeo as I had endometrial cancer, low stage, high grade 3 1/2 years ago and had surgery, chemo, and brachytherapy radiation. I am NED there. I was diagnosed a couple of weeks ago with breast cancer by ultrasound guided core biopsy left breast. Had breast MRI with contrast which now has the size of the original tumor at 4.1 cm (from original mammo and ultrasound at 2.4 cm). Additional adjacent spot is seen better on MRI at 1 cm (not yet known if malignant but highly suspicious) which takes the measurement of the whole thing to 5.1 cm. Previous measurements on that adjacent spot with mammo/ultrasound were 0.2 to 0.3 cm. Breast MRI also showed a suspicious spot not seen on any previous imaging on the right breast at only 2 mm. Bilateral MRI guided biopsy now recommended on the L adjacent spot and R new spot. Surgeon keeps telling me lumpectomy is the way to go. I have a lot of trepidation about that. I think I want a bilateral mastectomy (It’s a gut feeling, not to avoid the MRI guided biopsy, they still want to do that no matter what surgery I decide, nor to avoid any adjuvant or neoadjuvant treatment, I will do whatever is recommended). I am not interested in reconstruction at all as I have a strong history of post-surgical infection (even for port removal and the breast biopsy) and have prosthetic hips, one of which has already been re-replaced due to a prosthetic joint infection that happened shortly after I had the hysterectomy for the endometrial cancer, cause never determined (hysterctomy incisions, random occurrence, a bug bite I missed treating…). I have done a lot of research on my own (former admin asst/med transcriptionist at a university medical center). I love my breast surgeon and he says type of surgery is my choice. Bilateral mastectomy seems extreme but even though my brain says be rational, my very strong gut feeling is mastectomy. I am concerned that this was found on a routine mammo that was done on time and initially was surprised it was 2.4 cm, now it is 4.1 to 5.1 cm. It was grade 3 on biopsy so growing quickly or bad measurements? And I can’t feel it and neither can the breast surgeon because it is deep in the breast (I’m large C cup to small D cup) Anybody else relate to any of this? Different sizes on different imaging? Mastectomy vs lumpectomy?
Hi Dolores
So sorry you have to go through all this again, albeit at a different site.
I had TAH/BSO 2 years ago (horrid bleeding/fibroids, endometrial hyperplasia and ovarian mass) - thankfully all turned out benign. My surgeon at the time suggested monitoring, but at 56 with brca family history I just wanted it all out. Had Estrogel for a year after clear mammograms, before I found my lump… unsurprisingly ER+. Thankfully it was caught early and I had a therapeutic mammoplasty last Nov, RT this Feb and am now learning to live with the joys of anastrazole. There was a time last year during supply shortages I would have killed for HRT
The diagnostic process itself is highly stressful and doesn’t help when it’s long drawn out. Mine took 3 months and many investigations for a clear diagnosis for which I’m grateful (in hindsight!). It has given me great peace of mind knowing how thorough the team has been. Initially, I too was facing a similar choice as I had a palpable lump and suspicious calcifications. One the areas combined with my lump measured 49mm so borderline as you know for lumpectomy (depending on breast volume) - initial thoughts were also that the surgeon could remove both areas conservatively. I didn’t have MRI but my tumour size did differ slightly between mammogram and US which is not uncommon. With another suspicious area in a different quadrant, I began mentally to prep myself for a diagnosis of multifocal multicentric brca and mastectomy. Having had the TAH/BSO (midline incision) meant fewer reconstruction options and I was leaning towards flat closure as my ‘least worst option’.
Once I’d healed from the first biopsies I had stereotactic US-guided vacuum assist biopsy (VAB) of the remaining suspicious sites… 12 core samples in all. That lot took a few weeks to heal , but I’m glad I went through with it.
Having psyched myself up for mastectomy, at my next appointment my surgeon told me all 12 VABs were benign and that she would do a therapeutic mammoplasty to achieve a good cosmetic result (in my smallish breast) - finally making the decision for me. The post op path showed the invasive tumour was significantly smaller than that measured by scan, 14mm vs 21mm, and surrounded by DCIS. I too have worked in the field, in biomarker postdoctoral research and ironically as one of the first DCIS clinical trial co-ordinators when the screening programme was established. So I probably tortured myself by reading too much!
I was happy to go with her recommendation and am happy with the cosmetic result, having convinced myself earlier that all that mattered at the end of the day was the ability to function as before. I was in theory eligible for partial RT but opted together with my oncologist for belt & braces WBI for local control (largely due to tissue movement during the TM) and as mentioned take anastrazole for systemic therapy. Obviously no guarantees, but I feel confident that I’ve had optimal conventional treatment and the rest (diet/exercise/stress management etc.) is down to me. If it comes back I may need to resort to mastectomy at a later date, but meantime the evidence is that breast conserving surgery (if it’s possible) plus RT is non-inferior.
As you’re experiencing many things can change on this journey so its good to explore all options but also keep an open mind until all investigations have been completed. There’s such a lot to take in, but as you know, pathology is definitive. One of my surgeon friends advised me to ‘go with the flow’, probably the best piece of advice I’ve had.
Wishing you all the very best with the next steps in your diagnosis and decision making re. surgery. Please let us know how you get on. x
JS64
I’m in the US and mastectomies are very common here. It’s overkill but a lot of us just don’t feel like dealing with the amount of scans and preventative treatment that comes with a lumpectomy. We’d just prefer to have the breast removed. Anyway I was one of those people. Had what they thought was a 1.8 mm grade 3 hormone positive IDC tumor surrounded by DCIS. Total troublesome area was 3.6 mm. They could have done a lumpectomy and were going there first since I had triple D’s. I didn’t want it. My tumor was only seen by the mammogram and ultrasound also due to the size of my breasts. My oncologist couldn’t feel it either. So I didn’t like the thought of being at the mercy of future scans in finding something else. Plus, I had a lot of cancer in my family already. Figured it was only a matter of time before the breasts made something else nasty and I was done with them. Anyway told her I wanted a double mastectomy, she was fine with it, and off they went. Recovery was pretty easy. Two weeks later I started doing everything I wanted to do and I had no pain issues at all. I’ve since gone through a DIEP reconstruction and am pretty happy overall with the appearance. But honestly I didn’t mind flat that much either.
After my pathology results came in that 1.8 mm IDC changed to a 3.2 mm IDC with no DCIS. Plus that breast had a lot of other troublesome areas. The other breast was okay mostly but whatever. It was even larger than the cancerous one and I hated them by that point so absolutely no regrets whatsoever. Anyway my feelings were correct. I have no doubt I made the right decision.
Hi,
I can’t tell you what’s the right answer, I can only tell you my experience.
I had three primary tumours diagnosed, biggest 55mm, and my doctors only go on the biggest one and don’t add together.
I only know how many/correct size because of mastectomy histology. Ultrasound and mastectomy only saw two lumps, 35mm for biggest. I had also been told no evidence of lymph involvement but histology showed 2/19 positive.
For me, I wanted mastectomy to make sure gone, full testing to know size, how many, nothing missed… and I don’t regret that. I fact, my decision was confirmed by the change (although could have been nice to live in bliss ).
No issue being flat. Only wish they would have taken other one too -that wasn’t an option at the same time but he did say I can go back and request it.
Gut feelings can be hard to hold back… good luck
x