I do not know when my cancer will be return, after 3 years? 5 years? I do not know! This is beyond human control. I pray to God that "When the dead part me from my family and my friends from this earthly world, please it will be only My God's will, for sure it will be.
This is from my today subcriber of Google.
Gemma’s Story: Leiomyosarcoma, a Rare Cancer
Category:Uncategorized Tags:Cancer, Gemma's Story, Leiomyosarcoma, Rare Cancer
Category:Uncategorized Tags:Cancer, Gemma's Story, Leiomyosarcoma, Rare Cancer
Good afternoon, my name is Gemma and I am participating with you all in this program to talk about my disease. The cancer that I have is called leiomyosarcoma and is a very rare cancer. They have diagnosed 4,000 cases this year, if I am not mistaken. It is rare, and for this reason there isn’t much knowledge about treatments. It is considered incurable for now because they don’t know of anything that will effectively cure the disease; rather it is treated with surgery. If the surgery doesn’t work, it is then treated with chemotherapy and/or with radiation.
It really started in 1990. It was the first time that I had any indication that I had something. At that time we didn’t know what it was. What happened was that I had a pain, a really mellow pain. In the part–let’s see on the right side towards the pelvis, close to the appendix, close to there is where I had the pain, but it was a mellow pain, it was not a sharp, sharp pain.
For this reason I knew that it wasn’t the appendix because I had asked my dad who it just so happens is a doctor. I had asked him, and he touched me there to see if he could find something. He told me that if it were the appendix I would know it because it would be an attack, a sharp pain, and it wasn’t like that. For that reason I didn’t do anything, and I let months and months and months pass by, but the pain kept returning. And now it was returning more often and a little more strong, until it got to the point where it almost hurt me every day, and it hurt me for hours in a row. So then, in that moment, I was explaining it to my dad, who lives in another state. He told me over the telephone that I should go to the hospital, to go to the emergency room and get it checked. Well, that is what I did. We arrived at the hospital; I went with my husband. When we went to the hospital, the surgeon agreed with my dad that it should be investigated to see what it was that caused the pain.
Although it did not appear to be the appendix, they were still going to open, to enter to see what they found. When they opened it up they saw that the appendix was fine. It was perfect. But behind the appendix, in the muscle tissues of the peritoneum, they found a round tumor that measured four centimeters [or] five centimeters in diameter and they removed it from me. The tumor looked like it was the size of a small orange, or maybe an apple.
They then analyzed it in the hospital, but they didn’t come to a conclusion as to what it was. They were not sure if it was malignant or benign. For that reason, they then sent it to another national laboratory in Baltimore. There they checked it, and they couldn’t come to a conclusion either. What they did say was that it had a great possibility of metastasizing, without saying if it was malignant or cancerous. They said that it was a tumor without knowing its origin or status.
When I was done with the operation they recommended that for the first three years to do checkups, CAT scans every six months, or first for every three months for a year, later every six months. So that is what I did until three years passed, and in those three years I didn’t have any pain nor did anything show up on the scans. For that reason we left it. In other words, the doctor told me to not worry anymore because it would not return.
Recurrences of Leiomyosarcoma Begin
I continued with my life. I am a lawyer and I worked in a Public Defenders office at that time and my work was really active. I represented people in criminal cases. The years passed, the operation was in ‘91. Afterward, around 1995 more or less, I noticed that I tired easily and I was always tired. I got up to go to court and then I returned after court to continue sleeping.At any rate, I started to hurt again in the same place. So I returned to the original surgeon who told me that it was nothing, that I had nothing. I found two or three other doctors to talk to and I found one who did a sonogram in that zone. He found that yes there was another tumor, or what appeared to be a tumor where the original had been. Afterwards he did another sonogram in the liver region and it appeared that I also had cancer, a tumor in the liver.We decided in that moment that we would operate. First, the original doctor, [the] surgeon, told me that he couldn’t do the operation. If it was only in the original place he would try to take it out, but now that it had reached the liver, he personally could not do it. Perhaps after consulting with other doctors, oncologists, other cancer surgeons, they would have a better chance.Therefore they referred us, and we went to talk to three different surgeons here in Miami. And none of the three surgeon oncologists wanted to operate. They told me that when cancer spread like mine had, there was no reason to operate because it would keep getting worse.For that reason, they gave me no options outside of trying chemotherapy, although there was no chemotherapy that could cure it. It could make it grow less fast, more slowly and slow the tumor, and that could help me and I could probably live another two and a half, three years.
Searching for Treatment Answers for Leiomyosarcoma
As you can imagine, my husband and I were hysterical when they told us this. We started to investigate ourselves, buying books about cancer; we looked on the Internet. By asking questions, reading and doing research in libraries and through the internet, we found out that there were two doctors in the world who specialized in this type of cancer. One was in Germany and the other was in the U.S., but in California. So we called the doctor, sent him all of the X-rays and we sent them by airplane, so they could check them there to see what their opinion was.
Oh, but before that, after consulting the three doctors here in Miami, they told us that we may find someone in a Hospital in Pittsburgh, which is a very important center where they do liver transplants. Possibly they would consider doing a liver transplant if they took out the original tumor first, then afterwards they could take out the liver or part of the liver. Well afterwards they did more exams, now in the chest; they found that in both lungs I had dozens of tumors on the left and right side. When they saw this, the people in Pittsburgh said that they would definitely not operate, that they couldn’t, that they doubted anyone could operate [on] it.
For that reason, when we found the doctor in California we were hysterical with happiness because the doctor told us that we should go there even after seeing all of the scans and all of the reports and all of the other doctors’ opinions that we had consulted. He told us that yes we should go and when we got there, he told us that yes they could operate on me.First, we would try a type of chemotherapy to see if it worked because there were chances that it worked better than others did. In case it didn’t work, he had a great surgeon in LA who could do the surgery.
After a few months passed recuperating from that surgery, there was another doctor who could take the tumors out of my lungs. Afterwards, the person who specialized in chemotherapy in this type of treatment would continue to look for and investigate to see if he could find some type of chemo that would help me. In the meantime, with the surgery he could sustain me for a very long time.So for us, it was like a miracle, from being told there was absolutely no chance and that they wouldn’t even try to operate or do anything to try to save my life, to it appeared that yes they could, that they would attempt it, and the chances were good that I would live.First we did the chemo during [the] summer, and then in September of ‘96 I was operated on, on the liver and the retroperitoneum. From the retroperitoneum they took out a large tumor that had grown “to the size of a pomegranate,” as the doctor put it. Afterwards they dissected three lesions of different sizes that were in my liver. I believe the biggest was about seven centimeters, something like that. Two of the lesions they removed by cryosurgery, and the other one they cut out. It was all in the same operation and thank God all went well.
A few months afterwards, in February of ‘96, I returned to California so they could now operate on my lungs. In this case the operation went well and he was able to take out, as I recall, 13 tumors from one side and 20 or 22 tumors from the other side. I don’t remember the numbers well but I do know that it was almost two dozen in total.Afterwards they closed the wound. The opening was from the throat down to almost halfway down my trunk, about an inch above my belly button. I was ready to return to Miami after a few days to recuperate from the operation.
The last day when we were about to leave, pus started to ooze out of the stitches they had given me to close up the wound. Liquid started to come out of that spot and it appeared as if it was infected. We called the hospital and asked them if they needed to see it–if they needed us to stay so they could see the wound, and that it appeared to have an infection. They told us that no, not to worry, but when we returned to Miami, to go see the doctor there as soon as possible to look at the wound.
Complications After Surgery
We left California on Friday and we arrived in Miami that same night. We started to call the doctor who we had the last contact with in Miami, the one who had at last told us he could attend us here in Miami. We couldn’t find him; he didn’t answer his beeper until Monday when we went to the hospital. There, I was admitted immediately because the wound was completely infected, and the infection was so large that it had gone to the bone, to the sternum. The entire zone around it had also become infected, so they would have to enter and open me up to the bone and scrape everything and take everything out so they could take out all of the infection. If not, I could die from this.
They opened me up again, and in total I was in the hospital for five months more. Between intensive care operations and regular care I had four, five operations more, one because the port got infected–two times. I had blood clots; one in the port, the other I don’t remember where it was, but it was heading for my brain and it almost killed me. My parents and my family had to come three times from Detroit. Each time they were told that I wouldn’t survive the next day. They also had put tubes in my lungs. My lungs had collapsed; it was like they deflated completely. So they had to put a tube in me that entered my nose, lowered through my throat and entered my lungs to breathe for me.
That is how I was for ten days, eleven days. I had to be paralyzed during this time and I don’t remember anything because they gave me a drug because my body was rejecting the tube and I was consciously rejecting the tube. So for the body to allow the tube they had to, not put me to sleep, but paralyzed for ten, eleven days. Even after the ten, eleven days my lungs did not respond and the doctors told us once again, they told my family that if my lungs didn’t begin to function on their own in a day, more or less, that I would not have any chance of living.Once again hopeless, until the last moment, God who is grand helped us.
I started to breathe on my own. My lungs started to function. So they were able to take out the tube, and after that week, more or less, and two or three emergencies more, I was able to leave.That was in February of ‘97. I left the hospital the last day of March of 1997 after about six weeks between California and Miami. Three months after this passed, to recuperate once again, so I could return to be operated on my liver because two new lesions had popped up and one of the old ones had regenerated. They had to operate on my liver once again.The second liver operation was in May of ‘97. Afterwards in September of ‘98, once again, they had to operate on my lungs because the little tumors had continued growing and they were spread all over my lungs. The first time they had to open me up in front, in the center, and they could do both lungs at the same time. But this time, because they had to reconstruct the sternum with muscles, nails and iron, they couldn’t enter the same way.
Treated with Thalidomide
So they had to do the operation in back, but they entered my ribs on the right side where I had more disease, and the thought was that I would return in three months so they could do my left lung. It didn’t go that way because I started to take a drug called thalidomide, which is a drug that had been taken off the market a few years before.
They had taken it off the market because it had side effects where babies came out with physical defects. It was the little children that came out without arms or without legs or they hadn’t grown completely. They started to experiment with that drug in the nineties. They deduced that the reason the organs or the arms or legs wouldn’t grow in the babies was that the mothers had taken the medicine and it had prohibited blood to reach vessels and it prohibited new tumors to form. They then thought that it would probably do the same to all types of cancer, that this prohibited blood to flow and from new cells in the tumors. So they started to experiment, and it did happen that in various cases it functioned effectively.
I began to take it without delay because in cases of sarcoma like mine it hadn’t functioned. In my case, it appeared that it would work. Eighteen months passed, and only two times some growths showed up on my scalp and on my back. Minus these two growths, which they operated on, eighteen months passed without anything growing, nothing new and nothing old. It appears to us that it was due to the thalidomide I took. It appears that after some time the body doesn’t assimilate it and it won’t function anymore. So we had to begin to look for something new to use because once again the tumors in my lungs began to grow.
We were involved in that when I asked the doctor who was treating me here in Miami why he didn’t do a CAT scan on my pelvis because it had been some time since it had been done. Every three months they did my lungs and liver, but they had stopped doing my pelvis. He said that it wasn’t necessary because they were checking up on the lungs and liver, and there hadn’t been a problem with the pelvis, which is why they were not checking it.
I told him that it wasn’t certain because the first tumor had originated there very close to the pelvis. So he told me he would have it done. We discovered that another tumor had grown in the tissues of my pelvis and had entered inside the bone. So now it wasn’t just the tumors that had run through the blood stream. They had spread throughout the body to distinct organs, and now they had entered bones, and they could spread throughout my bones.
Before anything else, they had to take out the tumor that I had there because it measured about three and a half centimeters. Once again, like it happened the other time, I saw two or three doctors here to operate on me and none of them wanted to operate on me because first of all the tumor was too big and it couldn’t be operated on without losing the leg. Secondly, with all of the other tumors that I had in my body it wasn’t possible to find another doctor who would do such a debilitating operation when the other operation was going to kill me. So it wasn’t worth cutting the leg and taking away my quality of life if I wouldn’t live anyway.
The doctor told me not to worry once again. He thought that if we had luck with radiation, through the radiation the tumor could be made small enough to take it out without losing the hip and without losing the leg or only a minimal loss of the leg. In other words, by having this done I could possibly limp a little, but they wouldn’t have to take off my leg or my hip. Once again, he gave me hope that something could function.
Now that we knew that the chemo did not work, we tried radiation. I underwent 21 days of radiation at the maximum dose that could be done in this region [of my body]. It happened that not only did it make the tumor smaller, but six months afterwards the tumor had disappeared and nothing was left of it. The bone had also reconstructed and it had maintained itself without problems, in other words the tumor had disappeared. So we considered it another miracle that God had done.
Unfortunately, this still wasn’t the end. It wasn’t the end of my trauma, my saga, because once it had entered the bone marrow, the cancerous cells that stayed inside, that couldn’t be removed by surgery, spread all over and now there were three tumors in my spinal column. They had already tried radiation on those three tumors to see if we had luck like we had with the hip. The treatment did not function. Now we are trying again because the last scan that I had, it appeared that it had grown a lot, and it could start to affect me. It could leave me paralyzed in some part of the body if it affects some nerves, or it could kill me. So now we are–I am trying radiation treatment.All the more, in February we started to notice that one of the tumors in my lungs was growing at a more rapid rate than the others. Every two months we did scans and the size had doubled from two centimeters to four centimeters, up to eight centimeters, until it was so big that when I went to see the doctor it was so big, and it had spread so much that it couldn’t be operated on. It couldn’t be operated on by the doctor so he decided in that moment that we would treat it with radiation. Apparently the radiation worked, because according to the last scan they did, the tumor had reduced to half its original size in the period of a month. Apparently it will function and if God wants, the tumor will keep reducing. In the meantime we are doing the radiation here in Miami. The radiation on the lung was in New York and the other was here.
Anyway, as you can see, this has been one thing after another. Every time you think that you are two steps ahead you see that you are two steps behind, and you are trying to outrun the cancer. It is like being in a race and being two steps ahead of the cancer that is running behind you, catching up to you. That is how it has been the last five and a half years.
As you can imagine, I have had to stop working because the moment came when I didn’t know from one week to another, or from day to day, if they would have to operate, if I had to do radiation, or if I had to go to California or New York. On top of this the side effects of the treatments; it made my life difficult, the nausea, the sleep, the pain, the pain of surgeries of the tumors, the cancer, all made it impossible to keep working. Luckily I was able to apply for disability which has allowed us to keep doing the treatments. That and we had good insurance that treats us really well.
Living Every Moment with Open Eyes
How has this affected my life emotionally and spiritually? It has made a complete transformation in my life, in the way that I think, in my way of seeing things, in my way of seeing the world and treating my family. This is what I would say is the silver lining of it all, if there is one in all of this, it is that it has made me open my eyes and recognize the things that are important in life, the people who are important.
It has made me aware; it is like living every moment with open eyes, knowing that I am living. I don’t take a single second for granted. I don’t take a single second without thinking about what I have. This is one thing that on one side is sad, that one lives with a great deal of fear and uncertainty, not knowing what will happen. On the other side it makes one really live, really appreciate life. Not that I recommend it to anyone, unfortunately it is one of the things that make it possible to become more aware.
Finally, to conclude, I was asked if this has changed my life in any way. Of course it has. It has made things very different, but overall I give thanks to God and my family, my husband, my daughter, all that God has given to us and all that we have. Without them I would not be able to go through this all. I would not have a reason to do it. This is what gives me strength: to have family.