Squeeze Me Macaroni

 

I have a lot of information to update, so this will be a long one. I will discuss my surgery in the later portion, and will include pics. They are “black bar” edited, but if you’re offended by boobs you might not want to scroll to the end. Also, the internet might not be the right place for you… 😆

I’m going to start with Signatera, the testing, and the clinical trial.

My last test was in December. It was positive below analytical range, as they all have been. I had been on hormone suppression for 4 months, at that point. I won’t rehash all of it , but I went back and forth with my oncologist and trial coordinators at Yale and Ohio State. My oncologist said he would prefer I enter the clinical trial, so I set an  appointment to establish care. Yale is the lead, and there are 15 universities participating around the country. I believe the trial started in 2020.

I had a meeting with the trial coordinator from Yale in December. He said that it would not be a problem to enter the trial, even though I had already done the test, commercially. He said I meet the other criteria, and that the only hang-up was that I had to be on hormone suppression for 6 months prior to entering the study. That put my eligibility in February, but I knew I was having surgery (which Natera’s website says can affect test results) so I intended to sign up after surgery to avoid a compromised test.

The Yale coordinator said that I would get a test, and if the test was positive I would get scans. If the scans were clear of metastasis, I would move to the positive arm of the trial. At that point, I would be randomized to either “standard of care” (which is just continuing the hormone suppression I’m already on, but with more checkups/scans/labs/expensive, out-of-pocket trips to Ohio…) or I would get a drug combination of Fulvestrant + Ibrance. Fulvestrant is a different hormone suppressant from what I take, but it wouldn’t really be a big deal to switch. The problem with the Fulvestrant is that it’s an injection, and it has to be administered every month for 2 years. (IN OHIO!)

The Ibrance is more complicated, it’s a cdk4/6 inhibitor, which essentially disrupts certain proteins in cancer cells. It is a very effective drug, and is currently used to treat metastatic breast cancer. It has an assortment of possible side effects, and can affect quality of life, and potentially have long term consequences. 

I’m getting along reasonably well with the meds I’m on, but I was willing to risk the possibility of switching to the other combo if I still tested positive. I fully intended to move forward with the trial if I had a positive, regardless of which way I was randomized. It would be some course of action for myself, plus I could contribute to improving cancer science.

Unfortunately, Ohio State will not let me take a new test. They want to admit me directly as a positive- without retesting. It is not their decision. Their sponsor has refused it. The people I’ve spoken to at Yale said that if I did it there they absolutely would have me retest. (Unfortunately doing the trial through Yale is unrealistic.)Both Yale and OSU made it clear that this is not how *they* would do things, and the people at OSU have not been shy about their disdain for Natera. They are just stuck in a bad position because the sponsor is ultimately in charge (not the scientists).

Natera is not the sponsor, but they are “partnered with” the sponsor, Criterium, Inc. Criterium describes themselves as “a full-service Clinical Research Organization (CRO) providing quality clinical trial solutions that reduce costs & expedite market approval”. 

Oh…😐

The gist of it is that they have been doing this trial for a couple of years, across multiple universities, and they have only found 3 positives (after the required 6 months of hormone suppression). I would make #4. Ohio State hasn’t had any. They know full well that my hormone suppression may have “cleaned up” any stray cells, and they’re afraid a new test would be negative. I know that’s why they won’t give me one (it’s just blood work, it’s not anything complicated- that part has already been done). They want to use my “positive” to help them “expedite market approval” and I’m not going to do it. I’m not going to give consent for a clinical trial if I don’t have all of the current information- that would not be INFORMED consent. Everyone else gets a test after 6 months of hormone suppression. They know going in if they are positive. If I don’t get to start the same way everyone else does then the trial is flawed.

So, this has been an emotional rollercoaster, to say the least. My oncologist did order FSH and extremely sensitive estrogen testing, just to make sure my hormone suppression is suppressing effectively. My FSH is waaay past “post-menopausal”, and my estrogen was “</=2”. The lowest values the previous lab could even provide were “</=15”, so my suppression is definitely working!!! Hopefully that means any stray cancer cells are starving to death and none of this will ever matter, anyway. 

I do have my check up and lymph node ultrasound with my cancer surgeon next week. Assuming she doesn’t find anything, I will just have to put the previous tests out of my mind, have faith that the medicine I’m on is enough, and hope that even better treatments will become available down the road, if I need them.

As for surgery, I have had no physical issues with recovery. My pain has been tolerable, and I have had no indications of infection, failure, or other problems. I did, however, have a terrible time with the anesthesia. I had a major trauma event with anesthesia when Patton was born, which was compounded by all of the other trauma of Patton’s birth. I had a great anesthesiologist for my mastectomy surgery, and she made sure to help me through it and I did fine. This guy was not too empathetic, and it did not go fine. I had shakes and spasms in the night for several nights after surgery. I had a lot of irrational fear, depression, and anxiety during the days. It was rough- much worse than the physical recovery. Thankfully, it leveled off toward the end of last week and I’ve been a lot better since then.

I saw the plastic surgeon yesterday. He said it looks good so far. I do have a lot of restrictions still, which is frustrating, but he explained that the radiated tissue on my right side has been badly damaged, and it can be difficult for those tissues to heal. He said he would rather I hate him now than have the implant fail, and I definitely understand that. I don’t like it… but I understand it. 😆 I go back in 4 weeks, and will likely see the lymphedema physical therapist for a check up after that.

*pics are coming, so if you can’t deal with boob pics you should bail now*

**********************************************

Ok, so when I had my surgery and phase one of reconstruction, he placed tissue expanders that were eventually filled with saline, but initially looked like this:

The tissue expanders had metal ports inside that were moved via magnets and a needle was inserted to fill them with saline over time.

After he was done with the fills, they were heavy, uncomfortable, and as hard as coconut shells. They stuck straight out, did not move, and made the already challenging act of putting on/taking off a sports bra a goddamn circus act.

 They were basically Barbie boobs.

Later, I had my port placed, which looked like this.

After chemo, I had radiation, which caused a shit ton of damage. You can see it on the outside. What you can’t see is that it went all the way through, and I even have damaged skin on my back.

This damage not only makes it more difficult for me to heal after surgery, but also pulls the tissues tighter and higher on that side, making my final reconstruction slightly lopsided as well as two different shapes. The forums all say that boobs are supposed to be “sisters, not twins” so I guess it’s not a big deal. 🤪

My exchange surgery consisted of making incisions in the underboob, draining the saline from my expanders, pulling them out, cleaning out some scar tissue from the radiated side, placing the new, squishy, silicone implants, and removing my port. This is the outcome.

Aside from the asymmetry, it looks pretty good, and definitely feels better than the expanders. No more coconut shells! They will “drop and fluff” a little over time, and I likely still have some swelling, but this is essentially the final result. They are soft and squishy and pretty comfortable (although they can be cold, which is super weird). I am still recovering so I haven’t tried to wrestle them into a sports bra, but I’m pretty sure it will be less daunting once I’ve healed! Overall, considering everything that has happened, this is a pretty decent result. 

However, this is how the sides look. The radiated side is, naturally, the worst. These pics are from right after surgery, so I still have markings (which lasted for days!!!) and swelling. But the scars will just be there forever. I could try to “fix” them, but it would require more surgery, and I’m not sure I’m up to doing that again, plus it increases my risks of failure from the radiation damage. So, I think this is how they’re going to stay.

There’s been a lot going on, so this post is… a lot. I’ve completed all active treatment, and now I have to figure out how to move forward and accept that this is my body now, and more importantly, I have to figure out how to leave Signatera completely behind. I can’t let those tests lurk in the back of my mind, but it’s a battle. Fear of recurrence ruins years for many people- sometimes the rest of their lives. My positive tests have made it an even bigger challenge for me to move on and to actually live my life, regardless of how much of it I have left. I know that cancer treatments are improving at a rapid pace, so I try to remind myself that I don’t have to stay cancer-free forever, I just have to stay cancer-free until the next couple of rounds of drugs become available. I can’t exercise now, which is one of the main ways I cope. I take meds, I go to therapy, and I’m doing my best not to let it take over, though some days I fail.. That’s where I am now, and it’s a work in progress. Cancer isn’t really ever over for most people.

 I will let you know how my check up goes next week.