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Medical Forum / Diseases and Disorders / Cancer / August 2004Synovial Sarcoma - Successful Surgery
Three weeks ago I had a thoracotomy to remove a 1200 gram, 15 x 12.5 7.5 cm synovial sarcoma from my right chest wall. The tumor was described as "encapsulated" and had not invaded my lung or any other organs. I was told I might lose part or all of my lung and other parts, but that was not the case. Surgery was relatively short - just a few hours. My family was worried about seeing the dcotor after just a few hours, as they were told a more successful surgery would take longer. However, the tumor practically "jumped out of my body". Doctor was doing a little dance while he reported the results of surgery to my family, as he was so happy with the results. Path report indicates areas of necrosis (from 3 rounds of chemo) and negative margins. Radiation will not be needed, as had been previously discussed. Three more round of preventative chemo are to follow, and I start next week. After that, I guess I will be on track to get my life back. I have been recovering from my thoracotomy the last 3 weeks. It has been painful and very uncomfortable, but I get a little better every day. I have been on painkillers, and I am getting sick of them. Whenever I back off though, the pain returns and I reluctantly go back on them. I am looking forward to being free of pain (and off the pain meds), and able to get a good nights sleep, but I realize this will be a few more weeks away, at least. As far as beating cancer, I am not sure I did. Oncologist has told me I am "cancer free" now. Am I really? I have mixed feelings. I know this is the best possible outcome, but I am thinking I will spend the rest of my life looking over my shoulder and waiting for it to come back. I guess I cannot accept that it is all gone, as I am not sure it will ever be. Everyone tells me "good Job", but I feel that all I did was show up and the health care professionals deserve all the credit. I am living through many emotions right now. I am depressed about not being able to do much other than sit around and recover. I am elated about the results of surgery and my prospects for the future, yet I am afraid to let myself feel the joy and relief that I have truly beat this thing, so my reaction is subdued. I am worried about what will happen when I get back to work after I have recovered fully. I am worried that all I will do is worry! It has been such a strange year. All of the sudden, you find out you have cancer, and your whole life changes. Then, you get great results from the surgery and a few more rounds of chemo( that I know I can deal with), and then it should be a full recovery. I do not want to sound ungrateful for the results, (of course I am thrilled) it is just hard to deal with so many conflicting emotions right now. > <snip> After that, I guess I will be on > track to get my life back. [quoted text clipped - 23 lines] > to sound ungrateful for the results, (of course I am thrilled) it is > just hard to deal with so many conflicting emotions right now. Hello Fred, Valid thoughts and feelings. Others may be along later to share with you. In the meantime, I've found a web page of another who posted here 2 years ago. http://www.brianrayevans.com/overview.htm He seems to be a cheery positive thinking guy. His email is at the bottom. He seems to get a lot of inquiries or (hits). Perhaps if you email him, if he cannot keep an ongoing exchange with you, perhaps he has other contacts/survivors of synovial (ask him ), perhaps even a web ring or an email list that he can refer you to. There's alsosupport resources here http://www.sarcomaalliance.org/home.html where you may also find longer term survivors. There's also some private ACOR lists http://www.acor.org/mailing.html?l=s 337 and 584 subscribers If that link does not work http://www.acor.org/ Then click on mailing.lists, then S. If some or many are recurrences and it bothers you, you can always unsubscribe (unjoin ) from the list. I have some articles to post about fear of recurrence (in a while). The above should keep you busy for a while making contacts. Back later, J <Snip> J. Thanks for the links and the postings. I have read many of the articles and visited one of the sites. I feel a lot better already, knowing these feelings are normal. Fred... > <Snip> > [quoted text clipped - 3 lines] > > Fred... Fred, vent all you want. I'm sure your feelings are common to others' too, so everyone benefits. Just for the record, I wasn't expecting you to read all the articles . Once "on a roll" (while searching), I decided I might as well find as many with the same theme. (each was slightly different) That way, they're in the Google archives for years, so if I'm ever not here, people can "re"call them back up again if someone inquires or find them themselves (in the archives). Wishing you worry free restful sleeps and smooth sailing through your post-op treatment. By the way, you mentioned pain meds and sleepless nights. A connection?Perhaps check with your doctor? (There's one type, for me, that I have difficulty falling asleep, but I don't have the name handy at the moment). My best to you, J >> <Snip> >> [quoted text clipped - 24 lines] >My best to you, >J Hi J. You got on a roll posting them, and I got on a roll reading them! I have nejoyed reading everything so far. The sleepness nights are mostly from having trouble finding a comfortable position. Each day I get a little better. In fact, when I compare how I am today with where I was when I first got home, I am doing much, much better. I am just looking forward to getting a good nights sleep, whereas now I get a few hours at a time, get up for awhile, and go back to bed and get a few more. My healing is progressing quite nicely, I just have to be patient. Doctor said 4-6 weeks, and it has only been three. Even after 6 weeks, he said I would still feel something. So, I need to take it easy on myself. Anyway, thanks for the support. I was actually woried I might get flamed for posting these feelings, instead of posting that I had hired a marching band and threw a party for the neighborhood. TTYL... > You got on a roll posting them, and I got on a roll reading > them! I have nejoyed reading everything so far. Thank you. > The sleepness nights are mostly from having trouble finding a > comfortable position. Each day I get a little better. In fact, when > I compare how I am today with where I was when I first got home, I am > doing much, much better. I am just looking forward to getting a good > nights sleep, whereas now I get a few hours at a time, get up for > awhile, and go back to bed and get a few more. Thank you for explaining. I missed that in your prior post. (my apologies for making you repeat) > My healing is progressing quite nicely, I just have to be > patient. Doctor said 4-6 weeks, and it has only been three. Even > after 6 weeks, he said I would still feel something. So, I need to > take it easy on myself. It's good to hear that each day you're getting better and the healing is progressing nicely. It takes time. Some of us are impatient. :-) > Anyway, thanks for the support. I was actually woried I > might get flamed for posting these feelings, Absolutely not ! that's what this newsgroup is for. > instead of posting that I > had hired a marching band and threw a party for the neighborhood. Well, we'll march and throw a party when your treatment course is finished and then we can all celebrate, OK. Best to you, F. Watching for your posts, J <Big Snip> J. Thanks for the interaction. Tomorrow I go in for the first of three rounds of post-surgery chemo. I should be out in a few days. Good news here is that I will be having it in town. In the past, I went to Stanford, about 3 hours from here. Since surgery is done and we are clear on the future course of treatment, my local oncologist took over and we are having all treatments done locally from now on. This is good news for me of course, but also for my family, as I am maried and have two young kids. I thought I would share with the group how sometimes something as simple as having treatment in your home town can make a big difference. See you all in a few days. F.B. > <Snip> > [quoted text clipped - 9 lines] > group how sometimes something as simple as having treatment in your > home town can make a big difference. Good point, thanks F. J > Tomorrow I go in for the first of three rounds of post-surgery chemo. > I should be out in a few days. Good news here is that I will be [quoted text clipped - 3 lines] > all treatments done locally from now on. > See you all in a few days. How's it going, Fred? It's been weeks... J Doing well J. Thanks for checking. I go in for chemo #5 of 6 this Tuesday, the 31st. I will be in for two days, and come home on Thursday. 3 weeks later, the final treatment will start on September 21st. Then, I can get my port removed and begin to get my strength back. Oncologist has given me a return to work date of November 1st. Great news all things considered. Not looking forward to more chemo, but I know it is a path I must take, and I can do it. I like to think that I am rounding third and heading for home. In the mean time, we just returned from a week at the coast. Last little bit of vacation before my son returns to school. The weather was perfect, which means I had to hide indoors - all the chemicals in my body makes me very sensitive to the sun, as I'm sure you are aware. As it turns out, I got a little fried anyway. It was good to come back home, as it always is. TTYL! >How's it going, Fred? >It's been weeks... >J |
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