47 yrs old with IDC

Farmerma - So sorry you have joined the club no one wants to join.  When you say if felt different, mine felt like an 'itchy- tingle' that's the best description I can give.  I also had a biopsy in the exact same location about 10 years prior and I also did not know I was at additional risk. 

I am BRCA1+ and that was found out after my surgeries (results can take time).  I started doing my familial research and found out multiple types of cancers are closely tied to BRCA mutations those being: Pancreatic, Ovarian & Colon.   After meeting with the genetics counselor, armed with as much information as I could get she said she would be shocked if I wasn't positive for the mutation and she was right. 

If you have family or a friend who has gone thru this I can tell you firsthand its great to have a resource to talk to and also remember we are here for you day or night for any support you need. 

farmerma, I had not heard that before, that once you have a papilloma, you are move likely to develop cancer later.  I agree, would have been nice had they told me that, since I had one, about 20 years ago, had it surgically removed and in June of this year, found out I have IDC and its pretty much in the same location as far as I can tell.  I often wondered if maybe the surgery to remove that one, cut into that duct, making it weak or whatever and that is possibly where the IDC came from.  I was orig. going to have a lumpectomy but when they did an MRI, they found another papilloma, right under the nipple, that had to be removed and they said that along with the two invasive tumors, would be disfiguring.  I responded, disfiguring compared to what?  A mastectomy?  But, had the mastectomy, which turned out to be a good thing because final pathology showed the two tumors they knew of an a huge area of ductal carcinoma and they said I would never had been able to get clear margins with lumpectomy alone. 

peepgirl, I feel exactly like you. Once I found out I had cancer, I choose to go to a breast center for all treatment and that is where I had the MRI. I truthfully believe if I had not don that, I would have had a lumpectomy based on the mammogram and they would have never known about the other problems I had and things would have been left to grow. They do not have a breast MRI in the city I live in, so I am so glad I went to the breast center.

farmerma, you are so right, once again.  I was orig.going to have a lumpectomy and I had come to peace with that decision but when they said I was going to have to have the mastectomy, I was just sick.  I finally forced myself to look at pictures online and again, I was just sick.  I am overweight and for sure would not be going around in front of anybody but still, it really bothered me.  But then, I looked at the reconstruction pictures or the pics of well done mastectomies in which the ladies did not want reconstruction and I understood this was the best plan, so by the time of actual surgery, I had come to peace with the mastectomy.  I was also kind of like cimtootie, they orig. thought I had issues on the opposite side, which may also be why they elected to do the MRI but that turned out ok. I did a uni and in hindsight, like cimtootie, I almost wish I had done both sides, although, I can't imagine how it would have felt to feel on both sides like I felt on one side. So, now I will still have to deal with the mammogram on the natural breast and that is something I dread.  I just had surgery in July,so I'm still in reconstruction and haven't had to start into the follow up mammograms yet.

I meant, it really wasn't as bad as I expected it to be but I only had the one side done. The most pain I felt actually was from the incision from the lymph nodes and the annoying drains. I had two on the one side, and the pinching of the tissue expander. So I just meant, multiply that by two and I can't imagine how that would have been. I had my left side free to lift things or sleep on and things like that. When I have my exchange in December, I"ll be having a lift on the left so I'll get a little taste of what it would be like to have both sides involved. I was very lucky that I actually had very little problems with my arm on the mastectomy side, I could lift it just fine, only thing was a slight pulling in my chest early on but very minor.

I wanted to give a shout out to Farmerma and all you other sisters out there! I was looking for some Herceptin survivor info and came across this website. This is my first time posting and thought I might share my survivor story. I was 48 years old when diagnosed in 2005 (IDC, HER2+,E-) with multifocal tumors stacked up in one quadrant of my right breast. Originally scheduled for a right mastectomy (I was also told a lumpectomy would be so disfiguring I might as well lose the breast), I ended up doing neoadjuvant chemo + herceptin which "melted" the tumors away. Repeat mammogram was unremarkable (thankfully clips were in to mark the area where the tumors had been.) Since I had a lot of breast tissue to begin with, my surgeon did a partial mastectomy/lumpectomy, only performed like a breast reduction (turned sideways) on the right, while her plastic surgeon partner did a regular reduction (mastopexy) on the left for symmetry. What I reported in my DX here is what was found during pathology of the removed tissue. Sentinel node biopsy was negative (which is why my surgeon agreed to skip the total mastectomy, but also required me to have more chemo and radiation). I had agreed to a mastectomy if the sentinel node was positive, so I didn't know if I would be waking up with a mastectomy or not.

On the 10th post-op day, my surgeon still had me off work but with no restrictions for traveling by car. I asked her if I could go on a cruise. She said "Some days you just have to celebrate!" Three days later and armed with Vicodin, my husband and I left for a 4-day cruise to Mexico! I eventually had more chemo and radiation and I think 18 months of Herceptin total. My oncologist said that he wanted to cure me the first time and didn't want me coming back so treatment would be aggressive. He firmly believed my survival was absolutely dependent on Herceptin with chemo. He also insisted I have routine PET scans to ensure there was no other cancer anywhere else in my body. I did this on an annual basis for several years. Once you hit 5 years, they tell you that you are back to the normal risk of the entire population. I just keep looking forward!

Throughout my treatment I focused on what do I have to do today, what must I do tomorrow, and when's my next appointment. I tried very hard not to think about the future and what treatment I would need to go through, since worrying about the unknown doesn't change the outcome anyway. Somehow, I got through it and am thankful to be alive today. I realize that there are no guarantees in life for anyone. It can be snatched away in an instant. These days, I know I"m at greater risk driving in LA traffic! What I learned from my journey is that our breast cancer experience (including treatment & outcomes) are both similar in some ways and unique in others. There are so many little nuances to the kind of breast cancer, staging, treatments available, etc. that each person's treatment plan can be highly customized depending upon what is recommended AND what we feel is best for us. Don't be afraid to ask questions and insist on clear answers. You must be your own advocate! Know that you will get through this one day at a time! For me, after nine years, it's as if it didn't happen at all. Of course, I still have a slight divot in my right breast and a tattoo over my port scar as a reminder! But mostly I'm happy to wake up every day!