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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jkcares25 | @jkcares25 | Jun 30 9:28pm

Is a lumpectomy an option for you? My surgeon made an incision around the edge of my nipple so the scar would be less noticeable. I had 2 tumors removed, one was lobular and one was ductal. I'm waiting to find out the onco test results and using natural methods to prevent it from returning. Even with a mastectomy they can preserve your nipples. Best wishes for good decisions and confidence with your providers. Please keep us updated.

maggiejinx | @maggiejinx | Jul 1 8:10am

In reply to @jkcares25 "Is a lumpectomy an option for you? My surgeon made an incision around the edge of..." + (show)

Lumpectomy wasn’t really an option because of the size of the mass and where it’s at. It’s right behind my nipple. That’s actually how I found it! I woke up on day and my nipple was inverted and my areola was sort of half sunken in. I kept watching and it never changed so I went in for my yearly checkup. I had missed my mammogram last year somehow. The previous few years I had gone every year. I feel like I got really lucky because if I hadn’t had that physical sign i probably would have put off going in just due to being busy with life and I’m not the type who worries about things! I had a breast reduction years ago and I always thought that really reduced your risk of breast cancer so it really wasn’t on my radar. Initially when I scheduled my appointment I thought it was just tissue moving or something with turning 50 LOL. I could tell right away during the exam that the nurse was concerned and she turned out to be right. My plastic surgeon recommended a nurse called The Nipple Fairy who does 3 D nipple tattoos. So guess that will be my last step in this process. It will be my first tattoo LOL. In my mind I’m picturing the right side to look like a Barbie boob until then! I’m hoping to stay positive and not be too upset about how it looks through the process because it does matter to me. Thank you for your reply!! That’s wonderful your surgeon was able to do the surgery that way for you!! I wish you all the best too!! If you don’t mind sharing what natural methods you will be using (when you know) I would love to hear! Good luck with your onco type score!! I found it a real comfort to have that knowledge.

myoga | @myoga | Jul 1 7:06pm

In reply to @anatomary "I was diagnosed with atypical ductal hypertrophy (form of pre-cancer) in my right breast and following..." + (show)

@anatomary

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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@anatomary
I’m a brca2 mutation carrier. I originally decided on lumpectomy and surveillance. But after 2 years of surveillance, I couldn’t stand the anxiety of waiting for result. It felt like waiting for the other shoe to drop. So I had PBMX early this year. I had a tough recovery due to a thick hematoma on the radiated breast. But I recover and am glad I did it. I went flat. My sister sailed through the surgery without any issues. She was able to move around and tried to clean the house the next day but I wouldn’t let her! She didn’t need any pain killer. The drains are the most annoying things. They don’t hurt, they just bothered me. You would want to ask for nerve blocking as it will numb your pain for two days. You might not need pain killer after that. Make sure you strip the drains well to prevent clogging the drains. The purpose of strip the drain is to prevent clogging, not to get all liquid out of the drains. Let me know if you have any questions. Good luck on your surgery. You will be fine. 🤗

anatomary | @anatomary | Jul 2 5:23am

Thank you so much for the reply, advice, and well wishes. I'll be sure to strip those drains! I am the sister who is likely to want to clean the house the next day...my sister will be staying with me and will probably stop me🙃 My sister has notified her GP and the plan is for genetic testing - and then they'll go from there. It's good to have sisters; biological or chosen!

angiemal | @angiemal | Jul 2 9:31am

@maggiejinx I think it’s really encouraging that even though your tumor was large, there was no lymph node involvement. Does that mean your cancer is less aggressive?
I know this is incredibly hard, but these are the kinds of things we need to hold on to. A cancer diagnosis is unbelievably tough—but along the way, there are small miracles, and learning to recognize them can make a big difference
Good luck in your journey.

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maggiejinx | @maggiejinx | Jul 2 10:49am

Thank you!! I think so too!! I feel very blessed that it didn’t spread because I have read so many stories of much smaller tumors spreading. I think that it does mean it’s less aggressive. I am definitely looking for any and all positives!! I also feel like I may even end up healthier because this is motivating me to take my health seriously moving forward. I have goals to get in better shape and eat healthier and focus more on self care. This has definitely made me appreciate the little things more and has changed my focus a lot!! Thank you so much for your kind words of encouragement!! I really appreciate them and wish you all the best as well!!

dianetich | @dianetich | Jul 2 6:37pm

In reply to @maggiejinx "I met with my surgeon and I’m scheduled for a single mastectomy on July 11th with..." + (show)

Thank you for reaching out. I wish you well with everything too! Stay in touch!

maggiejinx | @maggiejinx | Jul 2 8:06pm

In reply to @dianetich "Thank you for reaching out. I wish you well with everything too! Stay in touch!" + (show)

I will!

anatomary | @anatomary | Jul 3 11:33am

In reply to @dianetich "Thank you for reaching out. I wish you well with everything too! Stay in touch!" + (show)

Wishing you the best!

ericab74 | @ericab74 | Jul 5 3:08pm

I had 1.9 cm in my left breast. I had them both removed. Idk about your insurance, but mine will pay for reconstruction. I'll be without for less than a year. You can buy prosthetics built into or separately if it will make you feel better. I did.

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