Part 3 of my breast cancer story….. the longest and hardest for me to write:
(I decided to include information that I had originally chosen not to, but reconsidered):
So, I heard the word “worrisome” as a result of the ultrasound. It was a Friday. That was one of the longest weekends of my life. Monday came and it was time for the biopsy.
That’s how long I had to wait to find out. They require you to bring someone back with you when you go in for results so I brought my husband. We were led into a very small room and the doctor came in and said to me….” it is cancer…and there are several types…one is DCIS/ductal carcinoma in situ (cancer is still contained inside the duct) and one is IDC/invasive ductal carcinoma (cancer cells have invaded outside the duct) among others. Clearly the first is the better of the two I mentioned. Less chance of migration of cells to other areas of the body.
At the age of 43, I was told I had an invasive ductal carcinoma tumor. Maybe that year and a half or so from first finding the lump would have made a difference there –> non-invasive/invasive?
I will never know.
I DO know that the cancer had most likely been growing there for approx 5-7 years and possibly as long as 10. And I DO absolutely know that had I been offered other screening because of the dense breast tissue, my cancer would have been found at a much, much earlier stage. (probably at the “in situ” (non-invasive) stage years before)
My whole reason for telling this story is to bring awareness to women. To make them aware of the risks that come along with breast density (www.areyoudense.org). And to also tell women to trust their gut instincts. I didn’t listen to mine as well as I should have. I blindly trusted that last mammogram…honestly, because I wanted to, even though I think I sort of knew deep down something was not right.
After diagnosis, the next 2 weeks were a whirlwind. Doctors visits and decisions to be made. Hurry, hurry, rush, rush is what it felt like. But in reality, there was no rush really. It was a slow growing cancer and had been there for awhile. I had some time, to take my time, to really make an informed decision but I was scared and wanted it OUT.
My decision was quick and easy for me. Because of the mammogram fail and because of my extremely dense breast tissue, I chose bi-lateral (both) mastectomy and reconstruction. I just wanted them gone. But I most certainly had no idea what I had just signed up for. I wish someone had told me what to expect. I think, had I known, and been better prepared, I wouldn’t have had as rough of a time through recovery as I did.
I’m not trying to scare anyone away from mastectomy as my path most likely would have been no different, just easier to travel had I been aware.
…and sadly, I, myself have been guilty of “glossing over” some of these details at times.
I decided to share a bit more of my personal experience in the hopes it will help to inform others who may be interested in knowing more:
My mastectomy was scheduled approx 2 weeks from diagnosis. Tissue expanders were placed at the same time as the mastectomy. Tissue expanders are a type of breast implant (except they are hard) that are sewn to the chest wall to expand the skin/muscle with saline over the course of the next few months to ready the body for the implants/reconstruction. (these are aptly nicknamed the “iron bra”) The filling is done periodically over the next few months with a needle through the skin of the breast. Sounds painful, it wasn’t, there is no feeling left there.
Next comes exchange surgery. Expanders out, implants in. However, it’s not as simple as that. Sometimes there comes revision surgeries to complete the process. (I ended up having a total of 5 including the mastectomy). But that is a story in itself….AND not typical of every mastectomy/reconstruction.
What follows diagnosis/surgery/treatment? Appts. Many appointments and tests. (one was for the BRCA gene, negative, thankfully)
For the first 2 years there is typically blood work every 3 months. Next 2 years, every 6 months. (I have “graduated” to every 6 months) Once a year after that. It’s nerve wracking, every time. But I am oh so grateful and relieved every time I walk back out of that office with good test results.
I had no lymph node involvement thankfully (didn’t appear to have spread) but was still originally set to have chemo. I am not a chemo fan. Thankfully there is a relatively new test called an Oncotype DX test. It looks at the genes in the cancer cell and can tell you your relative risk of recurrence. Mine was pretty low so my doctor said the risk of chemo side effects was higher which meant no chemo for me. This is a huge thing since I would have most definitely been given chemo before this test was available. I don’t believe this test is given routinely (or wasn’t at the time I had mine) so you may have to ask your Dr about it.
I was also to start on a drug called Tamoxifen (estrogen blocker…my cancer fed on the estrogen my body produces). I did, very reluctantly (this drug has terrible risks & side effects) but I did not do well on the drug at all. I took it off and on for 2 years until my doctor and I discussed the risks and options (possibly removing my ovaries-still undecided). She finally said I could stop the drug. It was a hard (and scary) decision but I have made it and can’t look back. This is not the right decision for everyone….but it was the right decision for me personally.
There have been down times along the way. Down times as I have adjusted and come to terms with all of it, come to terms with living with some fear….and the loss of a part of me. I took it for granted when I made the decision as to just how much of a loss I would feel down the road. (fear was guiding my mind at the time, so it’s no wonder)
No one really talks about that part of mastectomy, which I think is very unfortunate for women, so I was not prepared for the profound feeling of loss I ultimately felt.
And yes, there were a lot of “falling through the cracks” in my story but I am thankful for SO much. I am thankful that I pursued that lump even though the mammograms said it was fine. I am so thankful that it was still found at an early stage. I am thankful that my test showed I have a low risk of recurrence. I am thankful for my continued health and to still be here when many others are/were not so fortunate.
There’s something called survivor’s guilt….and I know it well. It has hit me many times over the last few years. Even now, writing about and sharing my personal experience, it hits me. Because I was very lucky. I didn’t have to endure chemo and yes my cancer was missed repeatedly….BUT it was still found at an early stage. Yes, very lucky. So I had multiple surgeries to recover from and suffered the “misery” of the “iron bra”. So I lost a part of my body that I miss. And am scared every time I go get blood work.
I am HERE and others are not. My own loved ones as well as those I don’t know personally.
I am thankful…and I am saddened at the same time.
And ….I am thankful for the experience.
That sounds strange I know but it is true. I had no idea what others with a cancer diagnosis really went through. I had no idea what it was like to hear those words “you have cancer” and what it would mean to me. And I had no idea how different I would look at life afterwards…from the “other side”. It’s like an awakening. A new start…with new eyes.
So for that, I am grateful.
Something else, that is so very important, I learned through this experience… is to “live in the NOW”. This moment. Each moment. Not in the past and not in the future. Because now is really all we know we have. Be present.
And lastly, this diagnosis actually led me here to write and begin this blog. I decided to jump into life and do what I love with all my heart. Using my artistic side, decorating, design and just anything creativity related are what I have always loved but had never fully pursued.
So here I am doing and sharing what I love, what makes me happy.
I love painting and creating. I love writing this blog. And I love what writing it has brought to me.
All of you.
I mean that from the bottom of my heart. I have met SO many wonderful people along this blogging journey, readers and other bloggers alike, who I am so thankful to have had the opportunity to meet, in person and online! And those that I would not have met otherwise.
So yes, it is so very true, in all things, give thanks…..because there is always, always, always something to be thankful for.
I really hope that my story is a help to others. I know it is a scary subject but I hope that it has brought some awareness and knowing in more ways than one. I hope that it has informed. And I hope that it may change a life or even save one.
This was my goal in sharing my story.