When I last left you, my radiation treatments had been scheduled for 7:00 A.M. Monday through Friday for a 4 week duration. The weekends were left free to allow the body to heal because radiation not only kills cancer cells, it kills healthy cells as well. I had been told that the most common side effect was exhaustion and that it is cumulative. Because of my already weakened state due to Multiple Sclerosis, I would need to pay attention to this. Before we would actually start the treatments I would have 2 appointments. A Planning Session and a Set Up Session.
During the Planning Session a series of several CT scans are taken. Once on the CT table, they bind my feet, I am instructed to lay with my arms over my head, they position my arms so they lay inside a Body Form that will be manipulated until it is just right, it will then be used for each session just for me. I can’t move my arms or hands because they are literally wedged into this form. I likened this position as being “trussed up like an animal for sacrifice”. The Radiation gals laughed, Doc Z looked at me kinda sideways. She is not used to my smart assness yet 🙂 I eventually asked why they bind my feet. People tend to cross their feet when they are told to lay down, in this position they often move their feet however imperceptibly – you cannot move AT ALL during the radiation process – so they bind your feet!
Remember what I said about there always being an audience when I’m flashing my boobs? There were at least 3 gals in the room, that I could see anyway. They are busy calling out numbers, re positioning me on the table, looking at computer monitors, people are in and out of the room. This goes on for about an hour, sounds like they are calling out coordinates, which they are actually. Doc Z came in a few times, making her own adjustments, until she gave the final ‘OK’. Once she did that, permanent tattoos are placed in different spots. Then, they take digital photos. The tattoos and photos will be used to position me each day in the precise location that was determined today. I am to return in a week for my Set Up session. In the mean time Doc Z created a plan. Radiation beams are shaped using computer software and hardware that is added to the radiation machine. The radiation beams are designed to best treat the cancer while sparing normal tissue. Also to keep the amount of radiation to a minimum to the heart and lungs.
The Set Up Session is done in the actual treatment room with the radiation machine, it’s a Dress Rehearsal of sorts. The Radiation Therapists had me lay on the table on my form and they use the tattoos to get me into position. Again, lots of calling out of numbers, re positioning me sometimes by just a very, very small tug on the sheet I’m laying on. I was told to just lay heavy, not to try to move myself, they would move me. I told them I can do heavy! They got a laugh out of that. Set up marks are made, this time with a black sharpie as they only need to last until the next day, and X-rays are taken of the treatment area. More digital photos are taken as well! These x-rays are not for treatment, they are used by the doctor to be sure the set up is correct, when it is, she gives the final approval for treatment. It took about 30 minutes to do this. The following day would be my first real day of radiation. Yay! Let’s get this party started!!!
I change into my gown and am brought into the treatment room by the same 2 gals as yesterday. They will be with me for the duration of 4 weeks. Every morning it took about 5 minutes to get me into the exact position. It really is extremely precise, I could sort of see the computer screens they look at to position the table, they use the tattoos to position me, there is also what appears to be a grid that is projected on me by the machine. The radiation machine moves around me to 2 different positions. I don’t see anything, no light, nothing, I don’t feel anything. Once it moves to the 2nd position, one of the gals comes in and makes an adjustment to the table, runs out of the room, and the 2nd dose is given. All told the procedure is about 10 minutes. The actual time of radiation is very quick, less than a minute in each position. Monday mornings, more photos are taken using the radiation machine along with some digital photos. Each Wednesday I go from treatment to Doc Z’s office for a quick check up and more digital photos. I begin to wonder just exactly what is being done with all of these photos … am I going to see them on Facebook or Instagram some day? When they take photos, it’s arms overhead, never a photo of my face included, and a placard is placed right above my breast with my information on it – Kind of like a Boob Mug Shot!
It doesn’t take long at all for the exhaustion to start, after just 5 treatments! I had started going to the gym a week before treatments started to work on gaining strength. I’d been told it should help with the exhaustion, giving me extra energy. I wonder how bad it might be had I not started working out? I also wonder if I am just tired because of the schedule I’m keeping now. Up by 5:00 A.M.(usually before). leave the house by 6:00, at the hospital by 6:40, From there I go to work until 4:30, go straight to the gym, work out for 50 minutes or so, 40 minute drive home, quick dinner, more exercises at home and whew, I am tired! I’m ready for bed by 8:00 ha ha. The fact that I don’t ever sleep well is only compounding my exhaustion.
The 2nd week there starts to be some changes to my skin from the radiation, it starts to get a ‘sunburn’ look and it feels warm. It isn’t tender or rough, I am using a special cream each day. I normally have dry mouth, and it is much worse once the radiation started. I notice my confusion and brain fog are worse than normal. My chest feels tight and it is hard to breathe at times. I mention the brain fog to the doctor and she said they are finding that having cancer can cause this . It isn’t just ‘chemo fog’ as previously thought, but a ‘cancer fog’. I just read an article at Cancer.gov, that they are indeed finding that not only chemo, but radiation and hormonal therapy can cause cognitive change. I forget to mention the breathing problems.
By the 3rd week I am really tired, but I continue going to the gym 3-4 times a week. I feel terrible when I leave. Usually working out makes me tired, but it’s a good tired. Now? I just feel awful and am really dragging about half way through my workout. I am however, getting rid of some fat so that’s a good thing!!
Thursdays are when I would begin a downhill trend when it came to energy levels, until Saturday. By Sunday it would start to get a little better. Then, I would start all over again on Monday. A vicious cycle 🙂
For the most part, I’m thinking that this cancer thing has been pretty easy. I’m not sure what I was expecting but really, it’s like nothing is even wrong with me. I feel relatively good. I make the comment to one of the gals waiting for her treatment each morning, that I feel like I’m cheating somehow. I mean those that go through chemo go through so much, the nausea, loosing their hair etc. I really was having a very easy time of it as far as I was concerned. It didn’t seem fair. I feel bad. I realize I really shouldn’t be complaining about anything considering what others go through.
My last 4 treatments would be Boost Treatments and before we started those, another Planning Session is done. This one was a quicker and I did get 2 more permanent tattoos. These boost treatments are aimed specifically at the site of the tumor only rather than the entire breast. For these, the radiation machine is only about an inch from my breast, normally it isn’t very close at all.
Physical Therapy in the form of stretching exercises for range of motion, as well as, massage therapy to the breast was scheduled half way through my treatments. I met with the therapist and she explained what she’d be doing and looking for. Range of motion because tightness from the surgery as well as the radiation could potentially be a problem. Lymphedema is another problem that can develop. One of the first things they did at Gaver’s Breast Clinic was a test to establish a base line, periodic tests would be done after that to determine the amount of fluid in my body.
Lymphedema is lymph fluid that collects in the skin and underlying tissues. Taking out lymph nodes and vessels makes it harder for the lymph fluid in the arms, legs, or other body parts to flow to the chest where it can get back into the bloodstream. If the remaining lymph vessels cannot remove enough of the fluid in the area, the fluid builds up and causes swelling, or lymphedema. Radiation treatment can affect the flow of lymph fluid by scarring and damaging the lymph nodes and vessels. This increases the risk for lymphedema.
I went to 3 appointments of therapy before cancelling the remainder. The therapist did what could only be described as pure torture for 15-20 minutes. I called her a sadist. The actual term is probably deep tissue massage, but all I knew was, I had not experienced that kind of pain possibly, ever! I literally had to stop myself from punching her twice during the last appointment. It seemed she almost found it humorous to be inflicting that kind of pain with her comment of, ‘I am used to jumping out of the way and people trying to kick me.’ It is now, 6 weeks later, and I am still quite sore and tender in the area that she was ‘massaging’. I have told 2 of my doctors and Gaver’s about it and they all agreed that it should not have been so painful, and she should have backed off. My understanding is they are going to talk to her about it.
About 4 weeks after my last Boost treatment, the exhaustion seemed a bit better. The tightness in my chest and being able to catch my breath continued to be a problem as was the ‘brain fog’. I know that all of this can last for quite some time after treatment.
I have been done with Radiation now for 6 weeks. I continued to be quite tired until just recently, (week of April 23) when the exhaustion was at my ‘normal’ level. Going to the gym continues to be a chore in that I am dragging before I finish my workout. My stamina just is not increasing. I have had to decrease the amount of weight on 3 of the machines from when I started in February. I don’t feel that I am getting the least bit stronger. This makes me depressed and frustrated. I continue to go 3-4 days a week, hoping for the best. I am not doing much at home I will admit. Despite my eating much better than I was, although I’d lost 8 pounds the first 2 weeks, that came to a screeching halt and I’ve gained 2 of those pounds back. I will loose them again, and gain them right back over and over. Again, it makes me depressed and frustrated. Part of my plan was so that by the time I go to Italy, I would be in better shape and have more strength most especially in my legs. That does not seem like it will happen, just the opposite actually. I worry what that will mean for vacation.
I have started the Aromatase Inhibitor. One pill once a day for the next 5 years. This is the final step in my treatment. I am Hormone Receptor Positive, for both Estrogen and Progesterone.
Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.
Common side affects with this are, hot flashes, night sweats, joint and muscle pain. Grrrrreat….these are all things I have had for years. I was told if the hot flashes or night sweats get really bad, that I should let the doctor know. So far they have increased in number and intensity but not to the point where I need to mention it to the doctor.
I had my first post radiation follow up with Doc Z May 1. She said my breast looks good, no additional lumps and it feels good. What that means is, the skin isn’t rough, it isn’t red, it is tanned, like a sun tan. She said that I did much better than most in that regard.
I cannot say enough good things about everyone at Centegra Sage Cancer Center. Everyone is so nice and make you feel so comfortable. I didn’t feel like just another patient or a number. The card signed by the gals and diploma on my last day was pretty sweet. I could not be more happy with my care from Doc Z. I feel so taken care of by her, which in turn makes me feel very safe. She is one of those rare finds in a doctor-I have been to many, many doctors in my life and she is without a doubt, in the top 2. (Although, the other has since retired so I guess that makes the field even smaller) She’s also very easy to talk to and has a great sense of humor. I would be lost without her.
The hot flashes increased in intensity and frequency and my joints were quite sore. Doctor told me to stop taking the AI for a week to see if things calmed down, if so, we would change medication. They did not, so I am on the same medication. He did say that often things will get better after a month or so. By Mid May, the hot flashes were much better. Joint pain remains but that is pretty much a constant with me anyway. I have had 2 more Lymphedema screenings and while the numbers are changing, I am still well within the normal limits. The insurance company is not paying for this test either, claiming it is experimental/diagnostic. It amazes me the reasons they come up with, and this is Blue Cross Blue Shield no less! Lymphedema is a very real concern and has to be monitored.
I had my first Tumor Mark Test done in May. Tumor markers are substances found at higher levels than normal in some people with cancer. They can be used to predict how likely it is that the cancer will come back after treatment. Looking for changes in the amount of a tumor marker may help detect a recurrence sooner than other tests. Mine came back ‘normal’. Unfortunately, my Oncologist has left the practice and his replacement has told me he will not be doing these tests, that they are not warranted by standard protocol. I said I had people asking me what was being done and how would we know if the cancer came back, his response to this was, ‘just tell them it won’t’. I asked again how we’d know and he said, he’ll know by talking to me and clinical results. I’m not sure what clinical results he’s talking about.
I don’t feel good about this and honestly didn’t care for his over all attitude and personality. When I brought this up to the surgeon, he agreed that while new standards are not calling for these tests because they can be false-positive, at the same time, if my previous doctor wanted these done, and this is what made him and a patient comfortable, he would not tell a patient otherwise. He also said he would never tell a patient that cancer would not come back. Since my diagnosis, I know 2 people who died within months of being diagnosed with 2 different types of cancer. Their symptoms came on very quickly. So how in the heck is talking to me and (what) clinical results, are going to show that there is, or is not, anything else going on??? I am looking for another doctor.
Throughout this entire ordeal I have always felt as though all of this was being treated like it isn’t any big deal and nothing to be concerned with. If you recall, it took 2 months before any treatment was started. Yes, there were some hold ups because of insurance, but when I questioned the time frame, I was told that, ‘we have time’. I was also told that I would have yearly mammograms – well, isn’t that normal? – and blood tests every 3 months – thus the tumor marker test. But now that won’t be done either? I am not sure what I expected, but I keep thinking about what I’d learned along the way and what I’d been told. 1) The cancer is a very aggressive one. 2) It is a fast growing cancer. 3) The tumor was Grade 3. 4) It is Lymphovascular. 5) Being told, more than likely, the cancer will return, we just don’t know where or when. I am not quite as comfortable as I once was in what is going on.
My breast and the surrounding area are quite sensitive and sore in spots. The surgeon has said it will take quite awhile until this all goes away. A friend of mine’s mother said she is still sore in spots and it has been a few years since her surgery. I also have a lump in the same spot as the tumor was. When I have brought that up to each doctor, and the radiation techs, they said it was the biozorb and it would eventually be absorbed by the body.
Ok, so, all this time I was thinking this biozorb was something that the surgeon puts in to absorb any blood or excess fluids after surgery. It’s a reasonable assumption right? Sounds good anyway. It did get smaller but didn’t go away and is quite hard. The area is way more tender than it had been. Actually, the entire breast, surrounding area and under arm area are all quite sore. In my last follow up with the surgeon he didn’t like the way the lump felt and wanted another Ultra Sound done and a Mammogram despite it being ahead of when my first one should be. Normally they wait a year before doing a Mammogram on a radiated breast. He told me not to worry, that he honestly didn’t think it was another tumor, perhaps a cyst had formed, but was erring on the side of caution. Fine with me, I’d rather be safe than sorry.
So, I mention the Biozorb while getting the Mammogram and after it was done, and I was waiting to get the Ultra Sound, the gal comes in and says, ‘Biozorb is a thing! We didn’t know what it was so we Googled it. You gotta look! It is a thing, it’s so cool.’ Well indeed it is a thing and it is very cool indeed!
I don’t know as this is the exact shape as what I have, they come in different shapes and sizes, but this gives you an idea. It is so cool how it works!! The framework has six titanium marker clips arranged in a fixed array to assist visualization on clinical imaging. BioZorb is placed at the time of surgical tissue removal, it is sutured into the tumor bed and the clips are permanent. Why is this cool? Lots of reasons actually and it would appear it is only being used in breasts right now. One reason is cosmetic, since the design is open, tissue can grow in between and around the area allowing for a more natural look to the healed breast. It also aides in less scarring, I don’t know how. But more importantly, in a nutshell, it allows the Radiation Oncologist to be much more precise in aiming radiation to the exact spot of the tumor and especially in boost treatments, thus minimizing toxicity to the surrounding healthy tissue. Now they know exactly where the tumor was, the exact size and exact shape. The body starts filling in the cavity left by the tumor very quickly, often making it more difficult for the Radiation Oncologist to know precisely where the tumor was. It also serves as a 3D marker for long term monitoring. It has only been in use for a short period of time, about a year at the time of my surgery, and according to the company’s website, my surgeon is the only one in the area to be using this technique. How cool is that?!? I was the first at Gaver’s Breast Clinic to get a Radio Frequency Chip implanted, and now this. I have a Cutting Edge Breast – LOL
My Ultra Sound and Mammogram were both normal, BTW. It was/is just the Biozorb that can be felt, it has not been completely absorbed yet by my body.
I continue to feel pretty good. I still am not gaining much strength at the gym but I am still going. My exhaustion level continues at my normal MS exhaustion level. The hot flashes are getting a bit worse again and with them, I feel very agitated, I feel like I may pass out and my skin feels like a million needles are sticking me. They are nothing like the regular Menopause hot flashes I’ve been getting for years. My breathing continues to be abnormal. I have started entering things in my journal again – I had started one when I was diagnosed and continued until I was done with the radiation. Keeping track of how I felt, any changes etc. I will be seeing Doc Z in less than a month and plan to bring up my concerns with her. Overall I still feel that I am somehow cheating – but I also am going to take that as a ‘win’.