Nearly 2 Weeks Post Surgery Update
Last Friday I got a call from Dr. Singh with the results of my pathology from surgery. It had been a full week since the lab received the tissue and I was on pins and needles. I had sent a note via MyChart the night before asking if they could check with pathology before I had to wait the weekend wondering about the results. Dr. Singh started the call by acknowledging that I had been waiting. In fact, verbatim she said, “the pathologist you had is VERY THOROUGH…but SLOW AS CRAP”. Just another reason to adore Dr. Singh. She quickly turned to “I have good news”. Big deep sigh of relief.
The right breast was totally clear, not even A-typical cells. That is great news. But I did say, “yeah, except I was never going to be ‘One Boob Pam’”. Without missing a beat Dr. Singh said, “nobody ever wants to be ‘One Boob Pam’”. Yet another reason to love Dr. Singh. They removed two lymph nodes that were directly linked to the left (and cancerous) breast. The lymph nodes were clear. That is VERY important because lymph nodes are like the superhighway that remove and filter stuff and move it all over the body (and eventually out). So, if cancer had made it into the lymph nodes – they could have been transported all over the place. This was a big deal.
The left breast…the pathologist divided the tissue from the left breast into 26 blocks and painstakingly went through each one. The DCIS (noninvasive cancer that was in ducts) was found in 12 out of 26 blocks. It was contained, but also widespread. This reinforced the decision to remove the whole thing because with a lumpectomy they surely wouldn’t have gotten every cell knowing how widespread it was…plus, it’s not visible to the human eye (even my imaging couldn’t get that granular). Also, had I done a lumpectomy and let’s assume they did get it all – that one would have been a mangled hot mess being in 12 out of 26 blocks. And then there was one surprise we didn’t know about. They found a 1.3mm (teeny, tiny) piece of invasive cancer that had escaped the duct. That’s all, but it was on its way to a much more dangerous path and the ability to get right into those lymph nodes and travel. Dr. Singh reinforced this is exactly why she proactively took the two lymph nodes. An hour before surgery they injected radioactive dye into the breast and waited for it to travel into the lymph nodes. That’s how they knew which lymph nodes to take and which ones to leave. If she hadn’t done that and just done the mastectomy and then found that teeny piece of invasive cancer, they would have no way of knowing which lymph nodes could be affected and so I would be left with lymph nodes that could have been affected and would have to worry and hope it never travelled. In my case the lymph nodes were clear, but also removed. She essentially took out the road to the rest of my body – to minimize any possible risk in the future (which could only happen if a cell was left behind).
Dr. Singh also said – in the pathology report my margins were negative. That means all the cancer is out! Brilliant job by Dr. Singh!
The toughest part of recovery so far for me has been sleeping. I am required to sleep on my back for 4 weeks and while I have a wedge pillow and all sorts of body pillows - when I am on my back, my mid back hurts. I’m guessing nerves or muscles were disrupted from surgery or the “not awesome tissue expander” in my chest is pissing off some nerve or muscle. But laying in my bed on my back is not a happy place to be. I discovered that sleeping in the recliner in my family room allows me to sleep well, no back pain. Until I can sleep on my side in a couple weeks – the family room is my bedroom.
I was cleared to drive, so yesterday was my first time driving when I took Marc to and from his colonoscopy. I just had a double mastectomy and Marc just had a colonoscopy…we are one hot couple, let me tell you! Driving went just fine, my arm mobility was good. Though I normally lean over to put my purse down in the car and what I have learned is these tissue expanders are hard plastic and when you move the wrong way – zing of pain. I’m learning how I can and cannot move without being zinged. No leaning over to put the purse on the floor for a while. I have certainly adapted to the tissue expander whereas in the beginning, it felt like the worst underwire bra you’ve ever worn (for those of you who have experienced this). You wear that horrible thing all day and the minute you come home you just want to tear that bra off. Except in this case the thing bothering me is not just under – it’s also at the top and sides and it’s under the skin…can’t take that one off! Back to Marc’s colonoscopy. Let’s just say he wasn’t really thrilled with the prep. He started to complain that he felt nauseous and miserable, and I looked him in the eye and said, “I just had my boobs cut off”. He shrugged and said he knew better than to complain to me but couldn’t help it. He also said that he had thought about it and if he had his chest cut out, he would be in a fetal position on the floor. I then reminded him he was basically in a fetal position after getting his COVID booster. Perhaps I have a higher pain tolerance 😊
I’ve been off all meds – including Tylenol and my anti-inflammatory for a handful of days. I do expect that once I have my reconstruction appointments where they continue to increase the fill in the temporary implants, I may be back on the Tylenol because I’ve heard it can be quite painful.
Several people have asked about how reconstruction works, so I’ll tell you how it will work for me. At the time of surgery, they put in temporary saline implants and this tissue expander monstrosity I’ve mentioned. At that time, they did have some fill in the implants. Because I got the over the muscle, there was more room to fill without hurting me versus if they had to go under the muscle. I expected to come out of surgery looking like a 10-year-old boy. Not so. Because of the fill, I’m maybe 60-70% of my normal size now. That is mentally huge because I look a lot like me. I will go this Friday (and every week until it’s done) and they will add saline until I’m the size I want to be. And for those curious, the plan is to look like me – same size, perhaps without the 48.5 years of gravity.
The addition of fluid happens a little at a time to mitigate pain from stretching the skin. You may wonder why I need to stretch to just be my old size. I’m not totally clear on that – for those who watched Seinfeld…is this shrinkage? No, but ensuring your skin heals completely is very important – the skin doesn’t love not having human tissue right up against it (and since my reconstruction is over the muscle – the implants are not human tissue). Because of that, they don’t want to burden the skin with too much – so they don’t start with my normal size…we go smaller, make the skin tout to heal and then slowly expand from there. Once I’m set – I will live like that for 3 months. Then at that time (I’m hoping April 2023), I will have another surgery – it’s outpatient with a 1–2-week recovery - to take out the temps and tissue expander and give me permanent silicone implants. There will likely be additional procedures from there – every three months for likely up to a full year from surgery. Nothing major – just optimization. I’m all for optimization. Remember, never waste a good crisis – the optimization is my silver lining in catching a ball of crap with this terrifying diagnosis.
I am not allowed to exercise at all for 4 weeks. I am allowed to walk at the pace you can walk around your house. The doctor said as long as I could keep my heart rate from being raised over 85 beats per minute, I can move. Marc cleared me to walk on our treadmill for 10 minutes at a time at 1.0 (no incline). Have you ever tried to walk at 1.0? No, because it’s not possible. I’m more likely to fall asleep than raise my heart rate doing that. My heart rate was so low I decided I could go a little higher. I went to 2.0 and got my heart rate to a whopping 65 beats per minute. I walk for 15 minutes at a time (don’t tell Marc I snuck in the extra 5 minutes) at 2.3. Only 2 more weeks to go and then I think I will get to do some real exercise!
I start PT tomorrow and have my first follow up oncology appointment on Friday. When I was diagnosed, my oncologist said if nothing more is found during surgery, I’m done – except for MRIs every 6 months and eventually every year. She said if they found more cancer it could mean hormone therapy (Tamoxifen) for 5+ years. They did find the 1.3mm of invasive cancer – so it’s not nothing, but it was small. I will talk to Dr. Lassi and understand my situation and options. But no matter what happens there, I will be fine. I am cancer free, not suffering any pain and beginning my rehab tomorrow. More to come!