Surgery Decision

BecMoylan

Hi, I'm 40 years old and was diagnosed with Stage 2 Triple positive cancer in my left breast in December last year. The core biopsy showed an invasive carcinoma associated with solid DCIS with lobular cancerisation. Both breasts are quite dense which has made each imaging study very tricky report. The actual tumour itself didn't look too sinister on mammogram and ultrasound, it was my decision to push for the biopsy as something just didn't feel quite right. During the appointment with my surgeon to put a surgical clip in, both her and the radiologist had quite a heated discussion on what was seen on the MRI as there were a few suspicious areas in both breasts but they couldn't agree on what was what - so more slips and biopsies were done. 

I am halfway through neoadjuvant TCHP treatment and am due to see my surgeon to discuss options in early May. I'm still awaiting genetic testing results but regardless I really want to push for a double mastectomy and reconstruction. I know this may sound quite aggressive but I think for my mental health and piece of mind alone this is the best option. I'm not sure I can handle the anxiety for the next 20+ years each time I have a screening appointment.

I've spoken to a number of women who were diagnosed at a similar age, who have had different cancers appear 10+ years after treatment and have required the mastectomy anyway, which I'll be honest has spooked me a lot.

Just wondering if anyone else is or has been in a similar situation? How did the discussions go with your surgeons?

Thanks you so much for reading this lengthy post

arpie

So sorry to see you joining us here, @BecMoylan .... you may like to join the Triple Positive Private Group, where you can meet up with others who've had the same diagnosis & possibly the same surgery & treatment xx
https://onlinenetwork.bcna.org.au/group/31-triple-positive-breast-cancer-tpbc

Dense breast tissue is quite common, but currently most states don't advise their clients when their mammogram shows that they have dense breast tissue - this should change before the end of the year!  It makes earlier diagnoses difficult to read, as often the tumour is the same colour as the dense breast tissue (white) making it more difficult to identify.  Lobular also presents more as 'strands' than 'lumps' ... making it more tricky to spot, as well grrr

I am sure other Triple+ will jump on soon, to support you xx. @Suki. @Tri

Our forum will be 'read only' from late today until March 27th, as BCNA is upgrading to a different platform .... so if you can join the group today, that would be terrific, as you will still be able to read thru the other posts in the forum 'down time'.  @Mez_BCNA ... could you arrange this please?  You could also ring our helpline for a personal chat, (specially during the downtime.) 1800 500 258

In the mean time, you can also put 'triple positive' in the 'search' area - click 'newest' and the most recent topics will show, for you to check out.  

You may also like to check out this post, that has a lot of info on the forum, eg what to take to hospital with you, questions to ask your team & even some 'self assessment' sheets to see how you are going, both mentally and physically after your surgery. xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

Take care & all the best xx

BecMoylan

Thank you

Suki

Hi @BecMoylan

Well done for advocating for yourself on the biopsy - sorry to hear it was cancer, but great that you could get onto it early.

I had dense breasts.  I was diagnosed with LCIS (lobular neoplasia) in both breasts after biopsies and clips on both sides and put on an annual mammogram screening regimen for surveillance.  Unfortunately, within two years I had developed a stage 2 triple positive invasive cancer - but ductal (not lobular).

I completed 6 rounds of TCHP, followed by surgery and then subcutaneous Herceptin and Tamoxifen (anti-hormone). 

For surgery, I had a bilateral skin sparing mastectomy in May 2024.  I requested this due to:
- having dense breasts (difficult to pick up abnormalities in screening),
- bilateral LCIS (abnormalities on both sides, even though only invasive cancer on one side)
- my age of 47 (I hope to be around for quite a few more years)
- peace of mind (I don't want to have to repeat chemo/targeted therapy a second time)

I also went direct to implants, as I didn't have enough flesh for DIEP flap, so I will need repeat surgery in 10-15 years time. The skin sparing mastectomy meant my nipples were removed (as my cancer was only 1cm from the nipple) - I had the other nipple removed also for symmetry and peace of mind.  

I went through the private system and my surgeon agreed with my request.  She did also explain that most (but not all) breast tissue is removed in a mastectomy, so you can still have a recurrence - hopefully your surgeon has gone through that with you.

Happy to answer any questions you might have - feel free to ask.

BecMoylan

Hi @Suki,

Thanks so much for your response, it's comforting to feel that I'm not alone as my thoughts are exactly aligned to yours

Tri

Hi @BecMoylan a warm welcome to you although I’m sorry you have had this diagnosis and disruption. Great to see @Suki and @arpie wisdom and experiences here too. 

In case it helps, I had a diagnosis of Triple Positive invasive lobular carcinoma and (unusually for ILC) a (38 mm) lump. 

It sounds like you have given a lot of considered thought to this and you make excellent points to raise with your breast surgeon. 

I was recommended a lumpectomy and went with that but I was able to keep an open mind because I also had TCHP Neo adjuvant therapy. I was able to see that the chemo was effective in reducing the lump at the mid-way ultrasound and had another discussion then with my surgeon - she stayed with her original recommendation but if the tumour had not responded, my surgeon might have suggested a mastectomy. 
I also knew I would have an opportunity to opt for a mastectomy after my lumpectomy - as it turns out my surgery pathology showed some cancer cells were still present (near the clip) but I didn’t go onto have further surgery and it wasn’t recommended either. The reasons my surgeon and oncologist suggested we stick to the original treatment plan is that lymph nodes were clear and I would be scheduled for radiation therapy and 11 cycles of a compound Immunotherapy and chemotherapy drug called Kadcyla aimed at any remaining cells and distant sites.
Like @Suki said even with a mastectomy we can’t really eliminate the possibility of recurrence, either in the breast or other sites, but it sounds like you’re doing a fantastic job at understanding the scenario for you, your particular circumstances and profile and investigating the overall options. 

I got comfortable knowing that I had a “decision tree” with a couple of stage gates where I could continue as planned or “course correct” if there were medical reasons to do so. I gave a lot of weight to the recommendations from my surgeon - a breast surgeon specialist - and my oncologist because I felt they had my interests at heart, had a pretty good sense of me as a person, and had insights gained from the breadth of their patient experience.

I hope you continue to get the information you want to be comfortable with what is right for you. 

Triple Positive is no fun but apparently it is considered very treatable with a very targeted treatment. I also wish you lots of positive energy during this phase of TCHP - it’s manageable for sure, and life saving but no cake walk, so sending you virtual hugs 🌻 
Any questions jump on line (once it’s reactivated!) ☺️