Bringing you all up to date…

Hi everyone …So if you’ve been following along I’m about to make a big jump here and wrap things up so I can share my blog with the rest of the world and also be current with my conversations…I must admit I wasn’t quite prepared for the emotional roller coaster that came with scheduling a mastectomy 6 weeks away… it was much too long of a wait… But in my case I had some health &lifestyle-related changes to make so My body would be more prepared for the surgery and recovery. While getting healthier was a positive thing, My original intention to enthusiastically blog about this whole journey transformed into emotional exhaustion and dread.

In summary on May 26, 2021 I had a bilateral mastectomy with a planned sentinel node biopsy and immediate direct to implant reconstruction on that same day. Going into surgery , we knew that I had ductal carcinoma in situ and we were hoping surgery would confirm that the cancer was still within the milk ducts in my left breast. I was already “uneasy” about this just because I knew the enormous size of the area of my left breast affected by the DCIS meant I was at very high risk having an invasive component along side of the ductal carcinoma in situ.

During surgery, my left “sentinel node biopsy” was negative meaning there was no cancer found in that first lymph node that my left breast drained into and the surgeon didn’t see any signs of invasive disease with his unaided eye…We were hopeful but secretly, I wasn’t ready to exhale just yet. I stayed one night in the hospital and couldn’t wait to get home…I slept for the first few days but once the general anesthesia was completely out of my system, I was ready to rumble…But no lifting anything more than 10 to 15 pounds for six weeks limits you a lot. Thank God for my family… I had so much help from those living in the house and otherwise…and so many wonderful meals and even just offers from numerous people I didn’t even know what to say because I had so much food I literally had no more room in my fridge or freezer…But really just even having people to talk to throughout the whole experience especially those special peeps in this “sisterhood” who made themselves so available emotionally to me … I am forever grateful for the new friends I’ve made along this breast cancer trail that I am on.

A few days after surgery , May 30th( which also happened to be Our 24th wedding anniversary), I heard the lovely little “my chart” notification/chime, alerting me that there were new results to view in my Sanford chart. Of I immediately logged in and clicked on “tissue examination results”.. I was shocked (& also somewhat prepared) as I read the first words *New primary diagnosis – Invasive ductal carcinoma…well fuuuuuuuuuuh (Yeah …picture Ralphie dropping the hubcap full of tools and lug nuts while helping his Dad change the flat tire on “A Christmas Story”( and I didn’t say Fuuuuuuuh or even fudge either!) 😆😅😬…

My first reaction was shock… I went into the living room told my Dad and Brian I don’t think they quite understood Just how strong my health literacy is because of being a registered nurse and years of knowing how to interpret pathology reports but they advised me to “wait until you talk to the doctor“ ..I also called my Mom and she immediately drove out to my house which is a few miles away and we hugged and sat on my couch sobbing … that was not the news we wanted to hear…Shortly after that Jim, my Stepdad, walked into my house as he was so concerned by how fast my Mom left , and knew it must not be good and he wanted to give me a hug too…we all knew that this probably would mean that my breast cancer journey was far from over….I didn’t just have one area of invasive disease but several scattered throughout my left breast the largest one wasn’t actually that large thankfully (1.6 cm) but because there were multiple spots they call it “multifocal disease”. Lymphnode results remained consistent with what they have found in surgery- no evidence of cancer cells which was a relief however there was something else they found in my tissue called lymphovascular Involvement or invasion…This is a fancy way of saying my cancer cells had already spread/grown into the lymphatic channels and blood vessels throughout my breast, & even though they weren’t found in my lymph nodes it could mean that cancer cells had already traveled via my bloodstream outside of my breast to distant areas of my body. Lymphovascular invasion( also known as LVI) is associated with a poorer prognosis and higher rate of local reoccurrence as well as a predictor of distant metastases… That was the kicker for me and the the one thing I can’t quite wrap my head around because LVI isn’t as understood as some of the other characteristics of breast cancer although some pathologists are advocating to incorporate the finding of LVI into cancer staging because it is such a prognostic marker.

Finally, after calling four times that week, I got an appointment with an oncologist…I really cannot put into words my frustration with that whole situation I had tried to see the same oncologist that a few of my friends in Orange City had, because they had such positive things to say about him but he was just too full(his schedule) to take me on…I was sad about that at first and then I found out that his partner Dr. Janania-Martinez A.k.a. Dr. Michelle,a female oncologist But the special interest on breast cancer would be able to see me the following Monday. (June 7th) .

I was so excited/anxious/eager To meet with my oncologist and find out what the next step for my treatment would be. At last we were sitting in the exam room face-to-face with my new oncologist. She confirmed what Brian and I already knew… my positive Estrogen and Progesterone Receptor status. That’s the first thing they look at when determining treatment of breast cancer my HER2/neu status was still “equivocal”. Basically the HER2 receptors on cancer cells equals a much more aggressive and faster growing type of cancer that also needs to be treated with a specific focus on disabling the effects on the cancer cells. HER2/neu is quite complicated but it’s also kind of fascinating so if you would like to learn more about it here’s a great article :

https://www.breastcancer.org/symptoms/diagnosis/her2

So, I had had the second level ,also known as FISH ,testing done after the IHC (first studies)I had done came back “equivocal” however while We were meeting with my oncologist,those also updated and imagine that…another equivocal result…so she said there is one more way we can try to determine the HER2 status in order to best formulate my treatment plan. That is going to take another couple of weeks so probably in another week or so I will find out the results of this test but for now we are once again in a holding pattern… “Hold” and “wait” and have always been for a letter words for me…I especially remember my Stepdad telling me years ago “Wait is a four letter word”…when it came to me having patience.

Dr. Michelle did give us an idea of what to expect ,depending on the results of my HER2 status testing. If my results come back as “HER2 positive”, then I would need to start chemotherapy…very soon…as well as 12 months of HER2 targeted therapy. And then after that it would be at least five years of Tamoxifen a.k.a. hormone blocking treatment.

If my results come back “HER2 negative” There is still chance I will need chemo however we would do something called the Oncotype diagnosis score which looks at the genetics of my cancer cells not MY genetics but those of the cancer cells and based on all of the different findings (every finding gets a certain score), I’ll receive a final “score” which determines how effective chemotherapy would be towards this cancer . Of course this is all “risk analysis” There are no guarantees that the cancer would come back, no way to know so early If this has spread out anywhere else and no guarantees that anything we do will stop it either I should add even if my status is HER2 negative, tamoxifen will be a part of my treatment plan according to my doctor. If it’s determined that my cancer cells are unlikely to come back and or won’t respond to chemotherapy anyways they would decide not to put me through it because obviously why would you want the toxic affects of chemotherapy without the benefits. I find that really interesting because we used to give chemo to everybody but now at least we can tell if it would even be beneficial to receive adjuvant chemotherapy after surgery.

As you can imagine I am struggling with all of this right now I’m trying to just stay in the “take it one day at a time” mindset and wait to see what my HER2 status says before I “freak out”…just a reminder I will have had type one diabetes for 30 years next winter…It’s extremely hard for me to imagine taking medications that could “seal my fate “when it comes to stroke/blood clots/heart attack which is already a heightened risk for people with diabetes. it’s terrifying to me to think that my only choices could be probable complications or guaranteed complications, or metastatic cancer recurrence. I do think that as much as I like my oncologist it might be something I want to get a second opinion for because it seems almost like nobody is as worried about the diabetes part of things as I am… and I feel strongly that every patient deserves to be considered holistically …and should be encouraged to be an equal voice in deciding on a plan of care…We should all be informed of the risks benefits both ways if we decide to go with the treatment and if we decide not to and also we should not be ashamed for our choice or belittled if that makes sense. I do find myself asking the question what would I I rather have ..,quantity? or quality? of course I say quality!! But that’s today… if I find out in a couple years or less that my cancer is metastatic because I didn’t opt for a particular treatment or that treatment I’m sure I could just as easily regret and want the quantity…Then there’s a question will I even have quality if I’m worried about the quantity all the time? Don’t get me wrong, I’ve seen many positives throughout this but some of the heart wrenching realizations of how cancer has crept into my life and completely changed my perspective on so many things… it’s just unbelievable. I am still able to be positive much of the time it’s just that sometimes I don’t even recognize myself because the stress and grief can turn me into an absolute opposite version of who I was before. It’s really kind of hard to admit that but I also feel it’s very important to be real here because I think it’s just different for everybody and it’s Okay to not be okay with this whole situation…It’s okay that I’m pissed AF…you know? it’s not fair and I just want my old life back… want to be able to snuggle in bed with my husband without having to lay on my back because I just had reconstruction. I just wanna feel like I did before cancer…carefree… it’s impossible not knowing when that will happen …don’t get me wrong…there been some “perks(pun intended) I mean hey, now I can wear a tube top without worrying about under boob sweat 🤣🤷🏼‍♀️🤪 also my vulnerability has brought out so many true friends and really showed me who I needed in my life and who was there for me and I’m so grateful for that. Also my family has been closer and around more than ever and to be honest I feel like I was too busy for some of the little things before and now I find myself really enjoying those little things…I want my family to know who I am and what I stand for and I want them to know how important they are to me…

Thanks for reading y’all…I will let you know as soon as I find out the latest results on my HER-2 status.