Newly diagnosed invasive ductal and lobular in right breast

I too (59 yrs) was just diagnosed with Invasive Lobular-Like Mammary Carcinoma and Ductal Carcinoma In-Situ (DCIS) that has spread to at least 2 axilla lymph nodes. Mine feeds off of estrogen so I will be taking 2 estrogen blocking meds for 3-6 months to hopefully shrink the tumors, followed by surgery and then radiation. I heard that radiation is brutal but I will need radiation no matter what. (my cancer is resistant to chemo apparently) I am struggling with deciding between a lumpectomy versus a mastectomy. I was told by the surgeon that there is a 3% chance of it returning in the other breast and with a mastectomy it lowers the chance down to 1%. At first I thought that wasn't enough to warrant a mastectomy but my sister had breast cancer at 44 years of age and now 20 years later it has returned. I know 1% isn't high but someone has to be in that 1% and I don't want it to be me.

They did not mention that. The only options that I have been presented with at this time is lumpectomy vs mastectomy. They are currently not recommending chemo because my type is resistant to chemo but they said depending on the results of my genetic testing and type of mutation, what they are proposing could change. It is all so overwhelming and the more I read/research the more conflicting information I get and I find myself going down some rabbit holes.

Interesting that I was diagnosed with ductal and lobular that has spread into my lymph nodes and yet I was told I had a 3% chance of it coming back in my other breast and you were given a 33% risk. That is drastically different.

I was diagnosed with atypical ductal hypertrophy (form of pre-cancer) in my right breast and following lumpectomy LCIS. Based on my personal and family history I have a 35% risk of developing either DCIS/LCIS, or invasive forms, in either breast. I do not have BRCA mutations but have two associated mutations (near to BRCA) with one, FUNCJ-BRIP, thought to be related to BC. There is not enough data yet - and that means my risk could go up or down in the future.

35% is ten times higher than average of 3%. So to me 3%, even 1%, is a good deal! Funny how the same percentage evokes different responses in us all...

As I understand it, my risk of 35 would mean 3.5 (say 4) women out of ten would get cancer... and 6 would not. But will I be one of the 6 or one of the four? Will BRIP elevate my risk? How long until we know...and how high might the risk go if BRIP is implicated in BC? If the risk went up to 50, that's 50/50 chance of developing BC - a flip of the coin! So is the glass half full or half empty? I am an optimist and would generally see the glass as half full - but for BC I don't want to gamble that I would be one of the lucky six. We all have to chose what risk we are willing to accept.

I was presented with multiple options to move forward with treatment including chemo-prevention, 6 month high risk screening, or a prophylactic bilateral mastectomy. I am 63 with a distant family history of BC (second and third cousins who died in 30's others 70-80s) but other than that long lives on both sides. I could be here an awfully long time! So I elected the prophylactic bilateral mastectomy. I don't want to have the anxiety of screening (and the waiting!) every six months, or long term chemo even if it is at low dosage - or after choosing either of these treatments being diagnosed with cancer later in life. I rationalized that if I dramatically reduce my risk now I will be able to recover more quickly and lead a higher quality of life for however long that might be. Sure, I would probably be disappointed to learn in the future (through some miraculous new technology) that I would have been one of the lucky six - reduction of pain and suffering is a good thing but at the same time I can only act in my best interest with what is known today. I might not be all that disappointed too; life is journey and my decision will likely yield growth or other benefits that are not seen now. It will shape me somehow; literally and figuratively!

I have my PBMX on July 9th. I have a little anxiety - but most is surrounding the waiting that will follow the procedure. I'm worried that the path might show an invasive form of ductal or lobular that was not detected in most recent mammography. It's a waiting game - but in any case, I will have greatly reduced my risk by removing my breast tissue. BTW everything I have read on lowering risk through mastectomy has said that not all the cells can be removed and this is why we have a continued, but low, risk of BC. I learned from my breast surgeon early this week that when they remove the breast they conserve some of the breast tissue to maintain blood supply to the skin - otherwise your skin would die on your chest. This makes sense but I don't understand why the literature/websites, etc aren't more transparent. When they say all the cells can't be removed we are all probably thinking the cells are very small and can be overlooked. I was surprised to learn they are actually intentionally preserved. Made me waiver for a moment - but then I thought 35 or 3%...pick your poison!

I recommend ChatGPT. It’s free login with Apple or Google ID. get about 12-15 questions before it times out. I looked at my chance of reoccurrence last night.

I certainly have gone down rabbit holes. Have found ChatGPT very helpful. Log in with Apple or google ID. DCIS 22 yr ago L breast. Couldn’t get clear margins so mastectomy. Negative nodes. Declined tamoxifen. Fluke bilateral MRI in April. IDC in L breast again. Lumpectomy and removal of implant in 2 weeks. Oncotype score was 13. Refusing AIs. Will try very low dose tamoxifen I think. Radiation is my rabbit hole. Close enough to heart. Haven’t met with radiologist yet. I am so grateful I made it this far. 70 years now. Looking at proton radiation if it’s recommended. Will have to travel. No guarantee insurance will pay. Ready to get this going. Long 3 months

Lobular BC is known as the "sneaky BC" It forms in links and sheets of malignant cells. Where as Ductal tends to clump and form an easier to detect lump. I did not have very good and thorough surgeons , oncologists or nurse nor a very good insurance plan where I was at first for 7yrs. of this journey. I tried to be on top of things and at diagnosis and did the recommended masectomy. I would now that I am alive to tell you this 13 yrs later get a double mastectomy.
I don't necessarily believe the 1-3% chance for reccurrence , It depends on how vigilant yr drs etc. are and I think your own general approach to your health as a whole and of course other unknowns since BC is so varied. I think lobular if you have only a lumpectomy has a higher than 3% chance of returning espec. if it was in 2 lymph nodes.

I too (59 yrs) was just diagnosed with Invasive Lobular-Like Mammary Carcinoma and Ductal Carcinoma In-Situ (DCIS) that has spread to at least 2 axilla lymph nodes. Mine feeds off of estrogen so I will be taking 2 estrogen blocking meds for 3-6 months to hopefully shrink the tumors, followed by surgery and then radiation. I heard that radiation is brutal but I will need radiation no matter what. (my cancer is resistant to chemo apparently) I am struggling with deciding between a lumpectomy versus a mastectomy. I was told by the surgeon that there is a 3% chance of it returning in the other breast and with a mastectomy it lowers the chance down to 1%. At first I thought that wasn't enough to warrant a mastectomy but my sister had breast cancer at 44 years of age and now 20 years later it has returned. I know 1% isn't high but someone has to be in that 1% and I don't want it to be me.

I had bilateral breast cancer 2 years ago. My left breast had ILC and IDC, Stage 1a, no lymph node involvement. Right breast had IDC, Stage 1a, no lymph node involvement. I chose bilateral mastectomy. My final pathology revealed A LOT! I had LCIS, ADH and DCIS!!! Two Onco DX tests were favorable, Score were 11 and 18. No chemo, no radiation, but I do take Anastrozole. I guess I would go with your gut, but Lobular can be tricky and if you have any of the other precursors a mastectomy might make you feel better. Surgery isn’t easy, neither is the Anastrozole, but I do have better peace of mind. Best of luck, you will get through this!