Newly diagnosed invasive ductal and lobular in right breast
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.
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?
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!
Hi I had DCIS at first but it had to be a mastectomy for me as the field was too large and multi foci but when they went in they found I had stage 1 IDC. The surgeon had gotten all the margins and I did not have lymph nodes invasiom. When the oncotyoe test came back I had a score of 49 so it would greatly enhance my chances of reoccurrence. So chemotherapy was suggested . Today was my first round and of course side effects have not yet kicked in.. like you I also asked my surgeon if I should remove the left breast.. her answer "why remove a perfectly healthy breast and why worry about it if there's nothing to worry about. She is so amazing. I have an excellent team .
Thanks for posting! I wonder how many times we get a more advanced diagnosis when a mastectomy is performed? I suppose I wouldn't remove a healthy breast if I knew it were healthy either- but I was told that my risk is 35% is for either breast given my two diseases (ductal and lobular). I wonder how many women have both ductal and lobular at the same time... I think it's great that we can post personal experiences because it helps to fill in the blanks. Of course, only a special population would sign up to do this too, so we don't know the full story but it's better than nothing!
Thanks for the hug, triciaot!
... and good luck with your chemo!
I think it is the dual diagnosis that greatly increases risk - at least that's what I've taken away from every meeting with me a team - and all the reading I've done.
If it's not too much to ask, could you elaborate on your treatment? Were you given choices or options -or did your team chart out a path that they recommended you take?
I did not have a dual diagnosis like you, but when I was diagnosed, her2+ was a really bad thing because herceptin was not even approved for frontline therapy.
My tumor was grade 3 and anchored to my rib, so they said we are going to hit it with pretty much everything we have.
That included multiple surgeries, a chemo cocktail of Taxol, Adriamycin, and Cytoxin for 6 rounds which I was told was the maximum lifetime dose of at least one of those drugs.
Then came radiation for 6 weeks which was easy but exhausting.
I had my ovaries removed but they still gave me tamoxifen for 5 years and anastrozole for 10 after that.
The tests that determine the percentage of risk with or without endocrine therapy didn’t exist either, my doctor said if I wanted the best chance, take the medicine.
It wasn’t easy, it wasn’t debilitating either. I had to walk every day or I would be really stiff and I definitely have aged a lot faster than my peers, but I am still here to complain about it.
I would have done just about anything to not go through hard chemo again, although I would if it meant more time with my husband.
A lot of patients now don’t have to go through the whole thing, and that is awesome but sometimes we don’t really have a choice if we want the best chances.
I should add that I was in my 30s when this started.
Have your doctors recommended a treatment plan yet?
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.