August PET Scan Results

I apologize for not writing a post sooner. Up until a week ago Monday, not much has been going on. All of my blood panels have been looking normal, well, for me anyway, with the typical rise and fall of my white and red blood counts and my ANC.

On July 10th after I went in for my regular monthly appointment with my oncologist I was feeling so good and energetic that I went home and worked out for the first time in ages. Now it is a month later and I am still working out and other than some intense fatigue last week, I have been feeling well and like I have completely recovered from the radiation treatments.

On July 31st, I had my PET Scan to see if the radiation treatments effectively treated the lesion on my rib in my back. I had the scan a month later than usual to give my body time to heal from radiation. I saw my medical oncologist on Monday this week for my regular appointment and to get the results of my PET Scan. The results are not the worst news, but not the best news either, but something in between, so I will do my best to explain what the results are and what they mean. {oddly enough, the doctor that read my scan and wrote the report is the wife of my medical oncologist}

As far as the lesion on my rib in my back is concerned, the report said that “there is increased sclerosis of the left eighth posterior rib with decreased FDG {fluorodeoxyglucose} uptake, SUV 2.0, previous SUV 4.2. Findings suggest favorable treatment response, with reported interval radiation therapy.” So, the lesion is still there, but its activity is less than half of what it was in the March PET scan. Increased sclerosis is a sclerotic lesion that is an unusual hardening or thickening of your bone. They can affect any bone and be benign or malignant. In general, they’re slow-growing.

I have never had any mention of my lungs until now. I have a “new ground-glass opacity in the posterior lower left lobe that measures 3.0 x 1.9cm and is adjacent to the left eighth rib metastasis. Given the interval development and radiation therapy, this is favored to reflect radiation pneumonitis/fibrosis.” Pneumonitis/fibrosis refers to the signs and symptoms of soft tissue injury resulting from radiation therapy. All soft tissues within the radiation field can be affected, including skin, connective tissue, muscles, nerves, and blood vessels. At this time, it is believed that this is just scarring from the radiation therapy, but my doctor will keep an eye on it. The activity SUV of this spot is 2.6, which is within the range of where my body runs, so hopefully, it will stay that way.

Now for one of the more serious findings from my PET scan. “Subtle new FDG avid lesions in the T8 spinous process, SUV is 2.1 and left S2 segment, SUV is 2.2; worrisome for new osseous metastases.” S2 is located at the level of the posterior superior iliac spine. S2 covers the back of the thighs. What does osseous metastasis mean? Bone metastasis occurs when cancer cells spread from their original site to a bone. Nearly all types of cancer can spread (metastasize) to the bones. But some types of cancer are particularly likely to spread to bone, including breast and prostate cancer. The good news with this finding is that the SUV in both areas is below where my body runs, so just as with the spot on my lung, they will keep a close eye on both sites and see if the activity increases.

The last finding in the report is “Increased FDG uptake within a left supraclavicular lymph node measuring 8 x 15mm. SUV 2.9, previously 2.2.” FDG uptake reflects the tissue glucose metabolism and is usually high in high-grade tumors and relatively low in low-grade tumors. Supraclavicular lymph nodes are lymph nodes found above the clavicle, which is where I had the first two small masses in my neck in February 2022. My understanding was that after my first month on iBrance, both tumors were dead and gone leaving a little bit of scar tissue behind, which I can’t even feel anymore. So this is another area that will be watched closely in the coming months.

I know that this was a lot of information and it certainly was not what I expected to see when my oncologist handed the report to me. We talked about possible changes in my treatment and that there are other drugs that he could put me on should my next PET scan show any increase in activity in the areas that we are watching. He would change my medication because an increase would indicate that iBrance and Faslodex are no longer working. He reminded me that eventually my body will adjust to the current medications and that we will have to make changes. For now I am continuing forward with iBrance and Faslodex until my next PET scan which will be in November.

I wish I had more positive news from this last scan but as I have said many times in the last 4 years, cancer is tricky and in my case it is aggressive, so my doctors and I have to be just as aggressive with my treatment. My oncologist says that cancer is very humbling, and that is so true. Cancer doesn’t care if you are rich or poor, the picture of health or sickly, young or old. If you ever feel a bump that wasn’t there before, you have pain that will not go away, you are constantly tired even with a lot of rest and good sleep or you just don’t feel right; please go see your doctor and find out what is going on. Your body talks to you, you just have to learn to listen.

Dermatologist Update

I just realized that I hadn’t given an update on how things are going with my dermatology appointments in quite some time. As a reminder, after my radiation treatments were over at the end of January last year, I was left with three blue radiation tattoos that are deep in my skin and much larger than they should be, so I decided to have them removed. I found an excellent doctor in Atlanta that does laser treatments to remove tattoos, and he removes radiation tattoos for FREE for cancer patients. On February 25th, 2020, I had my first appointment with him, and I can’t lie; it does hurt, but after a few hours, the pain turns into soreness, and a few days later, it doesn’t hurt at all.

Recovering from all of the surgeries, chemotherapy treatments, and radiation treatments is a very personal and challenging part of the cancer journey. I have found when talking with other cancer patients that they don’t mind the radiation tattoos, but for me, it is a reminder of a terrible time in my life, and I don’t want to see them on my body. What is odd to me is that my port scar, which is visible with most of the tops that I wear, doesn’t bother me; it is like a badge of honor to me. My scars from my multiple surgeries to my chest are still fading away, and some of them are almost entirely gone, so they don’t bother me either. But the radiation tattoos…I can’t stand them! I know that none of this makes sense, but it’s how my mind works; I guess what counts is that I am doing what I need to for me and no one else.

So far, I have had eight appointments, and the tattoos have faded quite a bit. I was trying to go every four weeks, but between the doctor needing to reschedule me a few times, me going through another surgery last April, and the holidays, I have missed about five months. My doctor is wonderful and very understanding, so when I saw him earlier this month, he assured me that we would keep going until all three of the tattoos are gone; he exclaimed: “We will finish the treatments this year for sure!” I will post images from my before and now progress in the next dermatologist update.

Side note: I asked the nurse the other day how much my appointments would generally be, and she said $125 each. Dermatologist appointments are not covered by insurance because they are considered cosmetic, so it doesn’t matter that I currently do not have insurance. I must say that I am so grateful that I found this doctor because I would already be $1000 into the cost of having these tattoos removed, and that is quite a bit of money when I think about it.

Happy Weekend!

Mood: Great! 😁

I am having a great weekend with my sweetie! 😁 I am working hard on getting my fatigue to go away and generally feeling better by changing a few things up in my routine.

Tomorrow I am going to get back to my workouts. The last time I saw my surgeon I was restricted to 5lbs and minimal walking. I am still dealing with sutures coming out from my surgery, but it is time for me to work on moving more. I have a follow up appointment with my surgeon on February 12th so I will talk to him about doing more than I am about to start with when I see him.

I am also taking more vitamins than I have before. My oncologist and I do not agree on this subject….he calls it “expensive pee” but says it is my choice. My radiation oncologist specifically told me to eat plenty of protein and take vitamins while I was going through radiation. I told her what I am taking and she said it was awesome, that I have obviously done my research. I have done a lot of research on what specific vitamins block cancer from coming back or growing. Will they help? Maybe, maybe not, but it helps me feel like I am doing all that I can to keep my breast cancer, or any other type of cancer from returning and pushing me into stage 4. I am also taking a few vitamins and supplements to help my hair grow, my finger and toe nails to heal and grow back healthy and my skin to recover from all of the damage the chemotherapy treatments did to my body over the summer. So, I am taking the following vitamins and supplements…..Probiotics, Biotin, Turmeric, Collagen, Vitamin D3, E, K2 & B-Complex. Yes, it is a lot especially when you consider the other meds I take for diabetes and now a hormone blocker to keep the odds of staying cancer free in my favor, but again, I feel that I am doing all I can to keep myself as healthy as possible and that helps me so much mentally.

 

Oncologist Appointment: The Start of Hormone Therapy

Mood: Nervous 😕

Today I had an appointment with my oncologist to discuss hormone therapy. This is one of the final steps in my treatment for breast cancer. I will be on medication for 10 years and it will give me a 75% chance of my cancer not returning.

Just as I did all summer long while undergoing chemotherapy treatment, they started my visit with taking a few vials of blood. I haven’t had my blood tested since my last chemo treatment and that was way back in the beginning of October, so I am nervous for the results which I will have by the time my oncologist walks in to see me….yes, it is that fast!

After they took my blood I went into an exam room and waited for my oncologist. As with most cancer oncologists and surgeons as well, my oncologist is very friendly, caring, a good listener and compassionate but also very direct as we are dealing with a serious disease. I trust him, I respect him and his opinion as he is here to help save my life. My blood test results showed that my white and red blood cell counts are a little low but nothing to be alarmed about. My body has been through a lot over the past year and it will take a bit to recover and have everything go back to normal. We talked about the different options as far as medication goes and he decided to put me on Anastrozole. He asked me to give the medication a month or two for my body to get used to it as some side effects will go away with time. But, he is not expecting me to have any major issues as I have done well with everything so far and my body will start to recover and get stronger as I get further and further away from all that I have gone through. If I have any severe side effects I will let him know immediately and we can try a different drug, there are two other drugs that he can put me on if I have any problems. I have often read about other breast cancer patients having a lot of terrible side effects from the hormone therapy meds, so I would be lying if I said I am not both scared and concerned about how my exhausted body is going to react. I have also noticed that a lot of patients end up opting out of taking the hormone therapy meds, much to their oncologists disappointed I am sure, but I don’t feel that I have that option and here is why.

When I came out of my first surgery back in April, which was to remove all of the cancer, I was moved from stage 2b to stage 3. We were expecting 3 to 5 lymph nodes to be removed but my surgeon ended up having to take out 18 which is a high amount, making my cancer not only invasive which we already knew, but very aggressive as it had spread so much in a relatively short period of time. My surgeon and oncologist seemed to ramp up the urgency in my recovery from surgery and my starting chemotherapy treatment as soon as possible. The words “very aggressive” and “maximum treatments” were used, everything had changed, and my anxiety went through the roof. I remember my surgeon telling me during my follow up appointment after my first surgery that all 18 lymph nodes were positive for cancer and that he was aggressive during surgery so my margins were clear, meaning that he removed all of the cancer up to where the surrounding tissue had no signs of disease. But, with all of that being said, I would now have to go through the maximum, aggressive chemotherapy, a reconstruction surgery, the maximum radiation treatments and hormone therapy for most likely 10 years, for my type and grade of breast cancer.

So you can see why I feel that I don’t have a choice when it comes to going forward with hormone therapy. Of course, I do have a choice, but to me it is a simple choice between doing everything my doctors and I can do to keep my very aggressive breast cancer from coming back, or giving breast cancer a chance to come back, bump me into stage 4 and eventually kill me as there is no cure for stage 4.

9 months have passed since my first surgery and in the meantime I have had two more surgeries, 20 weeks of chemotherapy and 25 radiation treatments and I am now facing another scary part of my treatment, but I will get through this like I have with everything else, prayer, love from my family and friends, and most definitely, a few more tears.

Last Radiation Treatment: **WARNING: GRAPHIC PHOTOS**

Mood: Excited! 😁

Today I had my final radiation treatment! I can’t tell you how relieved I am to finally have all of my treatments over with both chemotherapy and radiation!

The last few days of treatment were hard on me. My chest is red and bumpy, but it doesn’t hurt at all so I am happy about that. The redness is from the collar bone to the middle of my chest so it’s not exactly unnoticeable. But, in the last few weeks I have had a few sutures come out that were under my breast. When the sutures came out they broke my skin so I am red and in a little bit of pain in those places from the radiation. The good news is that In about 6 weeks I should be healed up and back to normal.

All in all, radiation treatment was not bad. The treatment itself is not painful at all and as long as I applied the medicated lotion 3 times a day to the treatment area I was not in any discomfort from the radiation. A few weeks ago I developed some back pain from the treatment table but that was because I have scoliosis and laying on the table day after day eventually caused my back to hurt. My time on the treatment table was not long, on average it was about 15 minutes, and it seemed like that amount of time was pretty standard.

I am tired both mentally and physically, and I am really feeling all that my body has been through over the last year. I will recover with time and I hope to go back to being active and enjoying life again, eventually. It has been a long year….it was just about a year ago today when I found the first tumor in my breast….

Next up….I am seeing my oncologist tomorrow to talk about going on hormone therapy.

Red rash from 25 radiation treatments

Full view of the red area, collar bone to breast

I am finally done and I had the best nurse ever! I will miss you Tania!

Ringing the bell!

Hubby & I so happy to have this part of the journey over!

6 Radiation Treatments To Go!

Mood: Happy 😁

A week from Monday, January 27th, I will have my final radiation treatment and I will be ringing the bell! Unfortunately, I had one day this last week where I didn’t go in for treatment because the machine was down, so my final treatment day has been delayed by one day.

My husband will be there recording the big moment as he did when I finished my chemotherapy treatments. I will post the video with my final thoughts on this part of my journey at some point next week.

Waiting to go in to my treatment, continuing to show a brave face even when I am tired and feeling overwhelmed!

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