I went to MD, Houston and had my middle lobe removed. They said all margins were negative and they got it all. I go back for follow up in Sept and will be seeing the sarcoma team to see what they would like to do next. Does anyone know what the recommended course of treatment might be? I get so many different answers. I hink this site knows the answers better than anyone! Any input is appreciated!
Thanks,
Jodie
Great post!
Thanks Scott,
I hope I get some good feed back and maybe also help someone else that may be going through something similar. I feel so uneducated, I am happy to be here to learn all I can. It makes me feel like I am not going through it alone!!
Since you never had chemo before, they may recommend it. It could potentially delay a recurrence although unlikely to prevent it. The conventional first line chemotherapy is called AIM (adriamycin + ifosfamide+ mesna). But not all doctors use it the same way. I had high dose ifosfamide for 4 cycles and a combination of doxorubicin and cisplatin for 2 cycles as my initial chemotherapy. My surgery was in between. Chemotherapy treatment is a bit controversial. I would follow whatever advice you get from MD Anderson. They see a lot of sarcoma and are well aware of latest research.
Thank you Elodie ~ I am hoping they will decide to just watch it. I know the opinion of the thorasic surgeon was not to "WASTE" chemo in a first recurrence, especially since it was localized and they said they got it all. How many times have you recurred? How painful and nausea were the chemo treatments? I only had radiation (on my neck) not a good place. I was so sick they gave me chemo steriods and than marrinol pills because the steriods were so bad for my body. I am certainly scared. I am learning alot and MD Anderson is a great place to learn, but life experience of all of the members here and what you (we) have all gone/going through is one of the best tools to help me with my fears. Thank you all.
Medically I think they may offer Chemo similar to what Elodie is suggesting (mine was solely high dose ifosfamide+ mesna), although it did take awhile to occur. I had a nice gap between surgery and chemo and an "Oasis" of getting back to relatively normal family life. It covered the summer of last year and it was very pleasant time and allowed us all to recharge the batteries. Kia ora Gary
The first chemo cycle was the worst for me because I didn't know what to expect and nausea was an issue. The following cycles went smoother. It was no fun but I managed to adapt. I had 5 lung surgeries. This disease is very tenacious!
if you can get proton therapy for your radiation if needed do that. it is much easier on your body as they can aim it more precisely and try to avoid your heart and breasts. that's what my daughter did when they said her margins were clean they still decided to do radiation because it was close to her vein. she did get the coughing from the pnuemonia caused from the radiation. she had radiation ending in Jan and was put on steroids, which she is still on. she is also on an inhalor. her radiologist said the dry cough when she's talking is due to the mucus glands in her lungs that dried up during the radiation. the morning and evening coughing is due to the pnuemonia. I can say she was just in town for us to have her NO CANCER FOR A YEAR party and the coughing has definately subsided quite a bit. she is hoping to be weaned from the steroids soon. so she is 6 years thyroid cancer free and 1 year synovial sarcoma cancer free. her endrocrinologist wrote a paper on her case because he thinks her synovial sacoma was due to the radioactive iodine treatments for her reoccuring thyroid cancer. I think you did a great think going to MD Anderson. Everything I've read is they are the best researchers in synovial sarcoma.
you can join IMMERMAN ANGELS and they will hook you up with someone-maybe my daughter-who has the same type of cancer as you- they are a great group like this one.
Thank you all so much for your answers. I realize every case is different and every Dr. is different. I don't remember Gary, are you in remission with no recurrence? And when you say after the rounds of chemo you had good period of "normal life". Can you give me an idea of the time frames? How long in chemo and how long well? And now are you back in chemo? Or going back for more?
Luke I know this is your first occurence. So you are almost a year, I am so sorry for your agony in surgery, I hope you are recovered. What is next for you?
Sorry for all the questions, one thing I am not used to is the "waiting" for all the answers. Before switching to MD Andereson in Houston I was at U of F, Shands in Gainesville, all my test results I got the same day, and the options within a day or two.
I also made the mistake of believing that I had this beat because of the misinformation I received or I should say, I only got PART of the information, and I blame myself for that too. I was so nieve. I thought because I was NEVER sick in my life and I was 43 I was good as gold. I had just passed a life insurance policy test 6 months prior with glowing colors. Than to have a rare disease as we do and not follow up ON MY ON, and just listen to the Dr's. I am not saying they are not right ` we are all human, but I feel like I am 5 years behind the 8 ball and don't really feel in control of a decent "input on my own fate" because when all of you speak of all the chemo treatments etc it sounds like greek to me.
I was told after the 2 year mark I was good to go. Not knowing a thing about "distant recurrence". I seem to have a classic case of that, I was 4 years and 7 months in remission. The 5 year mark is the time distant recurrence happens and most of the time it comes back in the lung.
I learned a VERY VALUABLE lesson in all this, hopefully I learned it early enough.
YOU must keep a CLOSER eye on your health than anyone else! I knew my body was starting to show signs of SOMETHING wrong. I had pain in my left shoulder right above my elbow, which if looked up is one of the signs of lung cancer.
I know this also veared off to another direction, but I am glad I could vent and people actually "GET" what I am talking about.
Thanks,
Jodie
Hi Jodie,
So far I am just having CT scans every 4 months, and trying to resume a normal life and be as active as I can. My surgeon thought that the oncologist might recommend preventative chemotherapy after recovering form surgery, but she didn't think it was the best choice given that my margins were clear and the tumor was "encapsulated."
Wishing you the best, and hope that you're finding some good answers.
I believe I am in the exact same position as you. I do not know how well encapsulated my tumor was yet this time. (first one in my neck was like yours, well encapsulated). I see the sarcoma Dr. on the 18th, I hope he leans towards the same decision for my case. I had radiation in my neck, although my margins were clear than but it was in such a bad place (neck wrapped around lot of nerves). I also was not as educated as I am now, I would have asked alot more questions. I am so glad all you guys are here. 5 years ago, there was almost nothing on the internet for this cancer.