Newly diagnosed invasive ductal and lobular in right breast

Posted by maggiejinx @maggiejinx, May 29 2:35pm

Hi. I just turned 50. I was recently diagnosed with a 6.1 cm non mass like enhancement which is confirmed invasive ductal and lobular cancer. I see the surgeon on Tuesday to find out the plan. I do believe he will recommend mastectomy due to the size and it is located centrally and under the nipple. I am debating where to have the left breast removed also even though it is not showing any signs of cancer. I don’t want to go flat for emotional reasons and also I am a double D bra size so it would be a huge difference between the sides. But it also makes me sad removing a healthy breast. I am also wondering whether I will need chemo before or after. Has anyone experienced this diagnosis or similar? I should add there is no lymph node involvement.

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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.

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@dianetich

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.

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I agree wholeheartedly. We each have to decide for ourselves what treatments we are willing to take.
I mentioned on another thread that I was unwilling to take the chance of having to go through all of this again, even if the chance was only 1.6%. In my case, I took every treatment my doctors offered for as long as they offered it, and it still came back and it didn’t wait 20 years.
Kudos to you for trying everything in your power to prevent recurrence.
Did your talkers mention if this dual cancer type increased your risk?

REPLY
@dianetich

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.

Jump to this post

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!

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