Ductal Carcinoma In Situ

Tomorrow May 4th I am having my second lumpectomy done. I Have been diagnoised with DCIS for the second time, this time in my right breast. I know I am very blessed and lucky that both times my cancer was caught early, and we will be able to treat it with radiation and medical (pills) oncology after they remove the area. I JUST FEEL LIKE A FRAUD!!!

I already have an invisible chronic illness, and now I have this, in which there is no "evidence" that I have/am going through cancer treatment. I had someone say-well it's not really cancer as it is DCIS and stage zero. And you don't have to do Chemo. I THINK they were trying to be encouraging, but it came across as like they thought i was faking it or something.

IDK---I am just feeling so down about this, and I don't know how to express this to my very very supportive Husband, or my two Sisters who had very invasive cancers.

I know I am very blessed and lucky, but I keep seeing articles about DCIS not really needing surgery, and not having to do lumpectomies. I have a very conservative surgeon and I don't think he would be having me do the surgery if it wasn't important. Just really down-and this is not like me-I usually have a very positive outlook on health issues and see the brighter side of things.

I do have genetic markers that carry cancer, and I want to yell at people--just because i am not losing my hair doesn't mean I am not going through stuff!

Thank you for reading this. i just really needed to vent somewhere as this has been weighing on me for weeks now. I need to be in a healthy state of mind so my body can also heal.

Light and Guidance to the medical team tomorrow.

#BreastCancer

Diagnosed 28 Feb 2020. Still numb, still in shock. Trying to read up and educate myself on options, etc. Seeing genetic counselor next week with my 2 adult daughters. Their fathers family is full of cancer, while mine is not. Had the needle biopsy 25 Feb 2020 and the bruise doesn’t seem to be going away. Anyone else experience this? MRI next week, then surgeon, radiation oncologist and medical oncologist the week after. My area of concern is 4.7cm, which looks to be too big for lumpectomy, mentally trying to prepare for mastectomy. I have not cried, not broken down. Why not?

I find information about people who get a cancer diagnosis and then experience anxiety from it. But not so much the other way around. I think it makes a difference, because I've dealing with anxiety for about 25 years, and this added stress feels like it steamrolls over any coping mechanisms that I thought I had in place.

My DCIS cancer was caught at stage 0, which is very fortunate for me - but it's grade 3, and so diffuse they are recommending mastectomy because they don't think they can get clean margins otherwise.

Four years ago, I was diagnosed with endometrial cancer. I was 36. I’m 40 now. I remember the shock I felt. My gynecologist had just told me a week before she didn’t think it was possible I had endometrial cancer, after all, “I was too young.”

About four weeks later, I was having a complete hysterectomy that later revealed that my cancer had spread into my cervix, my fallopian tubes, into one ovary, and into my lymphatic tissue. I did three sessions of chemotherapy, then 28 external pelvic radiations and then three more sessions of chemotherapy. I finished treatment March 2016. Now, almost four years post finishing my treatment, things are still great. My last checkup I was told everything looked healthy and good.

Me shortly after going bald for the first time. Do you see the relief in my face?

Shortly after treatment ended, I was talked into genetic testing by the physicians assistant for my oncologist. “Don’t you want to figure out why you got cancer?” she said. Reluctantly, I agreed. I thought for sure it would come back negative.

“Good news! You are not BRCA positive. But you do have Cowden’s Syndrome.”

Cowden’s Syndrome is also called PTEN Hamartoma Syndrome. It is a mutation of the PTEN gene. The PTEN gene is your tumor inhibitor gene. It causes multiple benign tumors (called hamartomas) all over your body, an enlarged head, goiters in the thyroid, skin tags, and puts you more at risk for certain cancer, like breast, endometrial, colon, rectal, thyroid, and melanoma.

It was like so many things regarding my medical history that I had wondered about for ages finally made sense. My big head could be explained. The goiter I’ve had for almost twenty years, lodged firmly in my thyroid, explained. The weird bumps and skin tags that never seemed to go away, despite my best efforts? Explained. I was no longer a mystery, things made sense.

They went through the list of cancer I was at the most risk for. Endometrial was at the top of the list. Next was breast. I was advised I had a 77 percent chance I would have breast cancer before I was 70. Then thyroid, colon, and skin. I asked what all this meant, and they said that I would have to be tested every year. Breasts would be tested twice a year. I would have to rotate every six months between a MRI and a mammogram. I would need to start annual colonoscopies. I would need to see a dermatologist for skin checks.

I began the annual testing. My life began feeling like I was just waiting for the moment where I would be told I would have to repeat the hardest nine months I’ve ever had to go through. It took me at least two years (two rounds of tests) before I finally accepted that this was just something I was going to have to deal with. This is my new normal. Living, working, breathing — but also doing everything I can to make sure that if cancer wants to pay another visit, it doesn’t stay for long.

Fast forward to May of 2019. I had been putting off my mammogram/MRI cycle. I had no symptoms to indicate that I had an issue, so instead of going and just getting it over with, I waited. Finally, upon the insistence of my Mother, I went. I thought for sure this would be like the others, that I could go, get my boobs squished, and leave.

Well, you know what they say about assumptions.

I was diagnosed with DCIS, or DCIS, early June of 2019. DCIS is an early, non invasive form of breast cancer. Typically DCIS, depending on the stage and grade, requires either a lumpectomy along with radiation or for those that wish it, a mastectomy for treatment. No chemotherapy.

Now, the thought of radiation again, even on a different body part, made me nauseous. The thought of having a lumpectomy and then potentially, needing to do this all over again with a recurrence made me feel even worse. If I was going to do this, then I was going to go for the most aggressive treatment option. I was going to do this and decrease my chance of recurrence down as low as possible.

I decided on a bilateral mastectomy, along with sentinel lymph node biopsy. My surgery was seven weeks ago today, on August 7th.

Now, I’m a fat woman. I had big boobs. I didn’t like them. They sagged. They were in the way. I thought losing them would be fine, because the most important part was that I do everything possible to make sure I did not have to repeat this process again later.

I remember the first time I looked at my chest after the surgery. I cried. I cried because my boobs had been replaced by a mess of bruising, swelling, staples and drains. It took me a good month before I could shower without crying because I couldn’t stand how I looked. Today, the swelling is mostly gone, the drains and staples took a hike weeks ago, and I am still adjusting to my new body shape. Reconstruction was not an option because my surgeon does not do reconstruction with mastectomies, so I went into this knowing I would be “flat” for awhile, if not permanently.

Me after getting my drains and staples removed.

I am back to work post surgery. My risk of recurrence for breast cancer has gone down to less than one percent, so body issues aside, I made the right choice for me regarding my treatment. I go to physical therapy once a week to work on getting my range of motion back to where it was pre-surgery, and it improves every day. I am trying to get back to a place where I feel reasonably okay with how I look. Some days are better than others, but I’ll get there. I beat two cancer in four years, and let me say this here so I can come back to this when I am feeling low — I beat two cancer in four years, so I can do anything.

My annual Cowden’s Syndrome tests have started, and unfortunately I’ll be going for a biopsy for my thyroid in about two weeks. Three of the nodules in my goiter that I have had for about twenty years now are growing per the ultrasound I had two weeks ago, and my endocrinologist and I both feel a more aggressive approach in monitoring them is needed. So yes, I’m still trying to shut the door on one cancer only to have the possibility of needing to open another door. I am nervous for the possibility, but am choosing to cross that bridge when I get to it.

Right now I’m just a Kathi who is trying to find her place in a post cancer world while hoping I don’t have to go back to the having cancer world.