At about 3:30 on Tuesday afternoon, I got a call from my plastic surgeon. The phone call went some thing like this;
Dr G.: Hi can I speak to Katherine, please?
Me: This is Katherine - Hi Doctor G (I had called earlier that morning to ask about something so I assumed he was just returning my call)
Dr G.: Hi Katherine, I have bad news. We have to cancel your surgery.
Me: Oh my God, they found something in my blood work - the cancer has spread.
Dr G.: (this is NOT verbatim) Well, because your implant is a new kind of implant (cohesive gel), they ration them out to each doctor and I have used too many in the past months so I cannot get O.R. time again until May.
So, it's looking like I have to wait another 5 months to get righty back. To be honest, I was so relieved that the problem wasn't my blood work that I was almost grateful to hear about the rationing of boobies. It's annoying that I have to wait, and even more annoying that that blood work at my pre-op was all for nothing but life goes on. Just to explain the boob rationing thing - we all know about saline implants, and silicone implants, well this cohesive gel implant has like a gummy bear consistency and so if it were ever to rupture, it wouldn't leak into my body, it would just stay put until it could be removed. It is a fairly new approach to implants and they are apparently rationing them.
Originally, tonight I had intended on writing about reconstruction because I have alluded to my expander and the concept behind an 'implant in training' but haven't really given a break down of how it all works and regardless of my surgery being cancelled, I think I should still write about it because so many women are faced with the decision of whether to reconstruct or not. I'm hoping that this entry will both educate those who know nothing about breast reconstruction as well as help provide input to someone who is currently deciding on whether to go for it. I just want to say that there are other reconstruction options out there where your own tissue can be used from other parts of your body but I know very little about those options and they were never offered to me which is why I didn't include them.
So first, I think it's important to discuss some time lines
March 11: Diagnosed
March 16: Met with oncology surgeon - found out I was getting a mastectomy not a lumpectomy like originally planned (the chance of recurrence doubled with a lumpectomy at my age) and learned a bit about an expander (not the massive needle part)
March 23: Met with the plastic surgeon
March 28: Mastectomy and stage 1 of reconstruction
So, I had 5 days between the time I met the plastic surgeon and found out about reconstruction and my surgery. I had five days to decide whether I wanted to go through with the expansion process or if I just didn't want a breast any more. So, in his office, all over about 30 minutes, I decided to grow a breast back. If I changed my mind, I was to call him over the following 4 days to let him know. I think it may seem like an easy choice to make, however, as I have said, I have a massive phobia of needles and the expansion process involves a whole lot of gigantic needles.
This is how it was explained to me...
The oncology surgeon will remove the breast (including my nipple - I miss her greatly) and then the plastic surgeon will insert the expander (picture an implant that is vacuumed-packed with a little bit of saline in it) under my chest muscle. It must be inserted under the muscle because there is not room for a breast anymore so the expander will stretch the chest muscle and allow room for an implant to eventually be there.
So, when I woke up from surgery, I had no breast but the potential for one to grow. I want to point out that I know many women whose plastic surgeon's would not put in the expander at the same time as the mastectomy (I think because of potential damage from radiation) but I am very grateful that mine did. Anyway, he then explained that about once every three weeks, I would go into his office, and get a saline injection. He would take a magnet that had an attachment on it to find the port of the expander. He would put the magnet on my 'breast' and this little attachment would become erect when he was over top of the port. Knowing that he found the port, he would then mark it with a marker. He would then get 100ccs of saline and load his needle, insert it into the marked spot and through the port he would inject my expander. It would be cool if it wasn't so gross. To be honest, I couldn't feel it between my freezing patches that I used and the nerve endings that are all shot on my chest - it really was pretty simple.
To go back a little bit, after surgery, when I went in for my post-op, my oncology surgeon's nurse had asked if I had gone to see Dr.G yet and I told her that I was so scared of needles, that I had been avoiding calling him. I knew my breast wasn't going to grow back on it's own but crazier things have happened. Anyway, I finally found the nerve to call and luckily no one answered and I left a message. He called back about 2 hours later and said he could fit me in the next day. I started asking him questions about the procedure and he said how easy it was. I started to cry and told him I was a little afraid of needles and I swear the next thing out of his mouth was 'Oh, Katherine, I remember you now." Anyway, the day before my first expansion was easily the most nervous I have been since diagnosis - I wasn't as nervous about losing my breast or chemo or the millions of tests but the thought of a huge needle (I mistakenly saw it once and it is large), going into my chest, yuck! However, I wish I would have known how simple it actually was. If I had to get my other breast removed, the thought of the expander wouldn't freak me out at all. It's not pleasant but it certainly doesn't hurt.
The expander is not all that comfortable in the beginning and there were days were it was like I was paralyzed for a few seconds because my nerves were trying to figure out what this foreign object was in my body. Sleeping became a chore and the only comfortable position was on my back. On my left side, the expander felt like it was going to move and on my right side it felt like it was going to pop out. I'm a stomach sleeper so it took a while to get use to. For the record, it's not like it used to be pre-expander, but I am a confident stomach sleeper again.
So, he told me that I could have up to 12 expansions (poor Keith, eh? That 12 frantic Katies that he has to deal with) but because I hated needles so much, he upped the ccs from his normal amount (normally about 50-60ccs get injected each time) to 100ccs every time, because I would rather deal with the pain afterwards than the anxiety of getting more needles. For about two days after each expansion, I was a little tender, my chest was tight and the muscles in my back were knotted just because every thing is being pulled. It certainly didn't lay me up but you can certainly feel it.
So expansion finished in August I believe, and I was so glad that I decided to get it done. Although, the shape is a little weird. Because an implant is round in shape, you would assume that the expander would be too but because it is 'vacuum-packed' and you can't control where the saline settles after each injected, mine is currently oblong. I'm looking forward to having a somewhat round boob again. I could keep this expander in instead of getting an implant, there's no harm in that (some women do that to avoid another surgery), but it's just not all that aesthetically pleasing and it resembles a lump more than a breast - I want a breast again.
I had to wait for 3 months after treatment was over before I could go in for another surgery (to get my immune system back up to par) which is why we decided on January 12th. The surgery is simple, the O.R. was only booked for 60 minutes, and then recovery is about 4-6 weeks. They go over the same incisions as my mastectomy scar which is one scar side to side at the bottom of the breast and one up the middle to about where my nipple would have been.
The final step is getting a nipple back. There are a few approaches that can be used. They can do some sort of pinching technique that gives the look of a nipple but that isn't permanent (not sure how long it lasts - a few years I think) and you will always have one erect nipple. And the other option is to have a nipple tattooed on which is a weird concept but I have seen some of them and you would never know. It's pretty impressive.
I had a reduction on my left side as well so that I could have a bit of a matching pair but nothing compares to the real thing. I miss my boobs, my ladies, my tatas, and although my one nipple is back facing forward instead of facing the ground, I don't like only having one, I would like two again. I am lucky that I have had the opportunity to grow a breast back but it's just not the same. I think I was just under the impression that if I ever had breast cancer, I would get both breasts removed and then get a 'sweet rack' and yet, it's just not that simple - evidently.
To all of you contemplating to have reconstruction or not, there is no right answer. There is only what you decide. I decided to get reconstruction and I am really glad that I did, even though it wasn't pain free, I am on my way to having a breast again (even if I do have to wait 'til May).