A tale about a thymoma

Week 1.

One Monday afternoon I started to feel out of breath. Later that night I also started to feel pain in my back, neck and shoulders, and also in my sternum when inhaling deeply. Turned out I also had fever. When the symptoms didn't go away by Wednesday morning, I decided to see a doctor. The main cause for alarm was high fever without any flu symptoms.

The doctor send me to have my chest X-rayed. That's when they first detected the tumor. My doctor then send me to ER with the X-ray pictures. After 4 hours of waiting, taking blood tests and more waiting, they admitted me to the hospital in order to give me antibiotics, in case my fever was caused by pneumonia. The next day I had a tomography, where they found that I indeed had a tumor in my thymus, but it didn't appear to have spread. The next day I was sent home, still feverish since the fever was apparently caused by the tumor and not by any infection. I continued to have a mild fever for two weeks, but I never actually felt ill. I did, however, feel really stressed, scared, and lost my appetite for about a week.

Week 2.

A team of surgeons were consulted about my case and they concluded that because of the size of my tumor, the surgery would be a big one, and therefore they wanted to be absolutely sure it was a necessary one. (This was the first time I heard the measurements of my tumor. 7 centimeters = 2,8 inches.) So they would take a biopsy to rule out lymphoma. Lymphoma could be treated without surgery.

Week 3.

The biopsy was taken, and it really wasn't all that bad. The whole procedure was done in about an hour, but it felt more like twenty minutes. They used a needle, and guided it in using tomography. It didn't hurt, since I had local anaesthesia. For a second I felt an uncomfortable sense on pressure, and that was the worst part of it all. So no biggie. :) After biopsy I had to lie down for an hour, after which I was X-rayed to make sure I didn't have pneumothorax. After that I was sent home. The procedure didn't leave a mark.

Week 4.

Searching Google for answers... thymoma, lymphoma, surgery, what if I have Myasthenia gravis? (I don't.) Will I get some paraneoplastic syndrome that will give me a hunchback for the rest of my life? (No, you don't have to have any additional symptoms, and if you do, it's not for life. I asked.)

 

Week 5.

I got the results from the biopsy. Majority of the cells in the sample were dead ones. And the living ones didn't seem to be cancerous. The surgeons will be consulted once again.

 

Week 6.

The surgeons said we will operate next week. Yaiks.

Oh, but wait! The next day they call me, and tell there's been a cancellation, and I can be operated on the next day. I cry for an hour, panicked and sad, and then head for the hospital. I'm admitted the same day, because the surgery is early next morning, and they wanna take blood tests and prepare me.

At the hospital I get to practice getting up from the bed and doing breathing and leg exercises. These skills will be needed after surgery to prevent blood clot. I slowly start to feel that I can do this. It's scary, tragic and nasty, but I can survive it cause they will tell me how.

The next morning they give me a sedative. And thank god for that. I'm calm when they take me to operating room, asking silly questions about support socks and anaesthesia. Very soon I am given anaesthesia, and I go out like a candle. No counting backwards from ten, I don't even have time to form the thought.

3-4 hours later I wake up. My voice is weak, and I feel some pain, put am quickly medicated. Nothing I can't handle. Besides, I keep falling asleep.

Back at the ward, I keep on sleeping. I eat a little yoghurt, and sleep some more. Late that night, I finally have to use the bathroom. They bring me a portable one, and I manage to use it without collapsing on the floor. I have two tubes coming out of my stomach. They are draining lymph and blood from the surgery area. That night I feel pain, and I could strangle the nurse for taking 45 minutes to bring me my medicine.

The next day, I'm still falling asleep all the time. And then I throw up. That continues for one day. Every time I eat, I vomit. But at least they take the tubes out. They just pull them out of me, and it doesn't even hurt. But at night, I'm again in pain. But now I know that the breathing exercises help me withstand it until the nurse brings me my medicine.

By evening of the third day, I'm a new person. No longer vomitting or falling asleep all the time. No more pains either. The bandage is removed and I get to see the scar for the first time. It's about the length of my hand, from wrist to index finger. Doesn't look that bad, it's pretty slim.

At some point I was told that the tumor hadn't been attached to anything, and they have been able to remove all of it neatly.

 

Week 7.

After 5 nights at the hospital, I'm released. Some days later I have awful back pains. So much so, that one day I felt that putting on a jacket was too much work. Maybe it would've helped if I had done the shoulder exercises and taking walks as often as they told me to... I suffered some back pains for about two weeks. Some days it wasn't that bad, and some days it was. After sternotomy, you are bound to move differently and this puts strain on the rest of your body. But the sternum will heal in time. For 2 months though, you are forbidden to lift anything that weighs over 1 kilo = 2 pounds, or to drive a car.

 

Week 8.

I'm walking about again. The scabs are coming off, and unfortunately some of them come off too early. The cut opens a bit, and there's a drop of puss. I get antibiotics, but a few days later the swab test shows I don't really have any abnormal bacterial fauna. The puss isn't a sign of infection. New scabs form over the "open" spots and I'm no longer grossed out by its appearance.

 

Week 9.

Nothing major happened.

 

Week 10.

The pathologist should have had the results from examining the tumor, but he didn't. I was told that they wanted to do some more histological colourings to once again rule out lymphoma. These colourings would take some more time to do.

 

Week 11.

The pathologist gives his assesment. The tumor was a thymoma, stage 1 on Masaoka's staging. My case is given to oncologists, so they can decide if I should still have some chemotherapy. This would be just in case, to minimize the risk of recurrence. Stage 1 thymoma means it hasn't spread anywhere, not even into the tumor capsule. So all in all, I should be fine even without the chemo, but if the doctors decide it's a wise precaution, I will suffer though it. After all, I wouldn't want to go through sternotomy again.

 

Week 12.

I feel completely normal again. The sternum has obviously healed. I'm even lifting things again, even though they told me not to. But when you're babysitting a baby, some lifting is inevitable. :) (Not my baby, btw.)

Still waiting news about the chemo.

Week 16.

I got a letter from the hospital. I need to have another CT-scan, so they can estimate if the tumor has been completely resected, or if I need to get radiation therapy to kill the remnants.

Week 18.

Blood test for the CT-scan on wednesday and the scan on friday.

Week 19.

Met the cancer doctor. She said there weren't any signs of tumor remnants in my CT scan, but the pathologist had found a small area in the tumor, where the capsule was invaded by tumor cells. So the tumor is Masaoka 2 after all. Histologically it's B1, which is something between benign and malignant. Therefore she recommends radiation therapy.

Weeks 20 & 21.

Lots of anxiety about having radiation therapy. Might get a brest cancer because of it.

Week 22.

Met the radiation therapy doctor. Nice woman, who answered all my questions. And there were plenty. She said that the patologists raport stated that 70-80 % of my tumors cells had been in the middle of dividing. So the tumor was fairly aggressive and radiation therapy would be wise. They took another CT-scan so they can plan the treatment, and tattooed 4 little dots in my chest, sides and diaphragm.

Later this week I had my lungs and heart examined to make sure I'm fit enough to have the treatment.

Week 23.

The treatment began. I have to go to the hospital every day, but it only takes 10-15 minutes to have the treatment. The radiation itself only takes about a minute.

Week 24.

Treatment continues. Also had a talk with the nurse and the doctor this week. They explained how the treatment works and what side effects to expect. Not much, just soreness of the throat and flaking skin.

Week 25.

Radiation and blood tests (cause the treatment is halfway through).

Week 26.

More radiation.

Week 27.

Last week of radiation and the doctors appointment.

Week 28.

Feeling really well and normal. I guess I survived. For now, anyway. Maybe I'll try to die again in five years time. o_O

One year after surgery

It's been over 8 months since my last dose of radiation. Funny how I never really felt any of the symptoms radiation supposedly causes. For all of you about to get radiation therapy: Don't be afraid, it needn't be horrible. It might just be the easiest treatment you'll ever receive. For me it was almost pleasurable, because I got to see nurses every day. Having someone ask how you're feeling every day is no minor thing. Especially when the first days of cancer are usually plagued with waiting. Everlasting, repeated waiting. That's what it feels like. You wait for your blood test results, you wait for your doctor to call, you wait for your diagnosis, and then they take it back and you wait again. By the time you know for sure what ails you, it's been weeks since you first went to the doctor. After that mental torture, having radiation therapy is... therapeutic. :)

Six months after the radiation therapy ended, I had a doctor's appointment to see if the radiation left any marks on me. I had my heart checked with ultrasound, and my lungs with exhaling tests. There was probably a blood test too, though I don't remember it anymore. Well, everything was ok. I will never be a professional athelete, because my lungs probably have scarring from the radiation. But they didn't notice my lung capasity to have deteriorated at all, probably because I wasn't very athletic before all this either. :)

The next stage in all this is having a CT-scan taken probably during the next 6 months. I don't expect them to see anything in it, since thymomas are very slow growing, and the spreading wasn't visible before either. And yet it was there. Well, I'm not saying it's still there, at least it shouldn't be. But it could be, even though we don't see it.

Physically, I feel fine, healthy. Mentally, I still feel kinda doomed. I wish I could say that after this scare, air is fresher, sky is bluer, and I appreciate life more. But I can't say that. It's more like feeling like everything is pointless, cause I'm just gonna die anyway. And probably it's going to happen sooner than I previously thought. Sounds like post-tumor depression to me. Well, I'm working on that. Probably I'll take decades to die, and it would be a shame to not enjoy those years to the fullest.

About two years after the tumor

I aced my first tumor control. CT-scans didn't show anything, and blood tests were also fine. Mentally, I'm in a much better place. The sense of doom that used to hang on top of me is pretty much gone. But it comes to visit me, when I have those check ups. But I now know, that cancer isn't necessarily a death sentence, and I know the meaning of early detection. I'm actually kind of lucky to get regular screenings now, due to the thymoma. Maybe they'll find the next one early on. But I also have to be active myself. I urge everyone to check their breasts/testicles regularly, and to take part in screenings when offered. Mammographies and pap smears etc.

And I also urge you to get help, if you're already battling cancer and feel like you can't handle it all. If they offer you an opportunity to talk with someone, take it. If they don't offer it, ask for it. Cancer is such a big deal, that everyone should get help coping with it. Even though more and more people nowadays get to go home healed afterwards, with only a scar to remember it by, like I did. :)