I am just wondering if there is anyone else out there who has been diagnosed with a sarcoma in thier back as I am the only one in the hospital I am attending that has one.
I met a man the other day that has one. He will be in to have it removed on Wednesday. I am set to have a vats on Tuesday. So I will see him in the hospital. Do you know if it is a liposarcoma? I can ask him some questions if you like. He does not know what the pathology of his is yet. After they remove it he will know more. I do know, that he has no symptoms. It was discovered in ct looking at his gallbladder etc. My liposarcoma started in my peritoneal cavity, and grew (a lot) and has now spread to both lungs. I am having a very large nodule removed from my left lung in a couple of days. I will keep in touch. Good luck with what you are going through.
Sorry I have not been in touch, I have been on a LOT of drugs to try and control my pain. It is under control now. I have just been told that it is a Sarcoma and that it is Terminal. I have had 5 sessions of Chemo and now going into my 3rd week of radiation therapy.
How did you get on with getting the nodule from your lung out?
Did you hear out the man got on?
What hospital are you attending?
How are you coping with day to day tasks?
Have you any pain in your back/leg?
Sorry for all the questions but I dont know anyone else that has this kind of tumour.
Before anything else, I want you to know that I am sending prayers on your behalf.
My own sarcoma was liposarcoma in my left thigh 16 years ago. There was not a lot of hope for my survival, only 5%, but I am still here today. I am devastated fot you that you have been told it is terminal. Sigh. Hard to know what to say to that.
Are you being treated at a Sarcoma Clinic? Not sure where you live, but MD Anderson in Texas and Mass General Hospital in Boston are the two oldest Sarcoma Clinics in the country, although many more have opened since I was treated. While most oncologists and hospitals see very little, if any, sarcoma patients, the clinics see them on a regular basis. When I was at Mass general, there were people from all over the world being treated there for various sarcomas.
Will surgeons try and remove the tumor from your back? Do you have a family or friend support system? (Hope you know that you have a support system here on the board) Are you mobile?
I am glad you are finally out of pain. Take whatever is prescribed an keep yourself pain free. There is enough other stuff to deal with and pain does not have to be one of them.
Fran, please keep us abreast of what is happening with you. We all care about you and want to be a help in any way we can on this board.
Thank you. I am currently living in Perth and I am attending Royal Perth Hospital under Dr Simon Troon who specialises in Sarcomas.
I have not been told what type of sarcoma it is but it is fast growing. I am 31years old and my husband and I were looking to continue on with our family as we have a two year old girl, we were told that there was not enough time to harvest my eggs that we had to start treatment ASAP.
Wow 5% good on you for fighting it!
They wont operate on it they have told me that I have a very slim survival rate and if they did I would be an invalid and on a colostomy bag etc. So not a good outcome.
We are originally from Ireland and we only came to Australia this April and I was diagnosed in June, my parents were out in July and my in-laws were out in August, they were a great help. We are on our own now but we have a great support from the hospital and nurses who call out to check on how I am doing.
I am using crutches at the moment as the tumour is pressing on nerves but I am getting more "normal" feeling back in my leg and foot - its only my right side that is effected. I was in a wheelchair for 3 months as I couldnt walk or even put a sock on my foot as the pain was unbearable.
How did both your operatins go? Have they said what the chances are of the tumour returning? Have either of you had anything similar happen to you (like my leg not having the power and normal feeling) ????
Sending you both hugs. Likewise keep me posted on your progress.
Oh, I am so glad you are being treated by a sarcoma specialist. Also, good news is that you are working within a supportive hospital with caring staff.
My own tumor was in my left thigh. (16 years ago now) Ultimately, one of the two major muscles was removed and a lot of tissue. Muscle was pulled down from under my breast and from my stomach and flipped into the leg. It was not done to act as a substitute muscle, but rather as an element in healing. The chance of a recurrence was 95%. However, 16 years later and nothing. Although the doctors in there jargon call me in long-term remission, I call myself cancer free. I walk off kilter ( my hubby says I walk like Popeye!) and that has caused leg, hip and back pain, but I am still mobile most of the time. I use a cane a lot if I have to do much walking and in stores, the carts serve as a walker for me. It pales in comparison to what you are enduring.
Will radiation be used to try and shrink the tumor? I know that is sometimes incorporated in treatment plans. I actually had 42 radiation sessions before the big surgery. After the surgery I was started on chemo.
Fran, no one can infallibly predict the future. For me, regardless of what the doctors said about my survival rate, I always looked at it as 50-50, either I made it or I didn't. Was I brave and carefree about it? Nope, it got to me at times. However, I did strive at least to make the time I was living count. I tried my best to enjoy my grandchild and my family and friends. I hope you will try to, also. Cancer can steal a lot of things from us, but we don't have to allow it to claim our souls.
I am really glad I have had this chance to meet you. Truly.
Good to hear from you.
I have had 5 sessions of chemo and I am just finished my 3rd week of radiation and I have another 4weeks to go - 33sessions in total.
The doctors are so far pleased with my progress, with how well and how quickly I have responded to the treatment. I was fitted with a port just to the right of my breastbone for chemo and hopefully that will be removed after February when I will be cancer free (fingers crossed).
I have tried to keep positive as much as I can as I have a young daughter to think of and my husband too. He has been brilliant throughout this as you know it is not easy.
One thing is I have made alot of friends from being in and out of hospital for treatment. When I was having chemo I was admitted on the Monday morning and went home on the Friday afternoon, had chemo everyday.
One of the girls I have met through this has just been given the all clear from Lukeamia - she has invited me to her mother`s house christmas eve for some food and to let the children play. We will have no family over here with us for christmas. We have friends we met before I got diagnosed and are hoping to spend christmas day with them.
How did you find your tumour? Mine was found because I had a pain in my back which quickly spread to my right leg and within the space of a week I went from having a pain in my back to not being able to walk.
I am sorry that yourself and other poeple are going through something similiar but it is such a relief to me to know that I am not alone as everyone else I know with cancer has breast,lung etc.
How did your family cope with the news and did you tell them straight out?
A lady who is attending radiation with me has not told her family that she has cancer so is dealing with this on her own. She is a lovely lady from Greece so brave to be dealing with this on her own, I know everyone is different and want to deal with things in their own way, but she needs the support.
I had tests yesterday to determine if mine had spread, and so far no indications that it has so I am a bit comforted by that. I had a contrast MRI of my hip, a contrast CT of my chest, and a pelvic Xray. All showed clear.
My issue is that when the lump was removed they felt it was a simple fatty benign tumor, so it was not treated with the same care when they removed it. I have authorized the doctor to go in and take wider margins to safeguard against the return of the cancer. Basically we'll take out more good tissue in hopes of getting any of the remaining bad. I have that surgery in two weeks. I am told there may be a need for radiation, but not chemo.
My lump became visible recently, and there was no pain associated with it. My only other symptom was I felt fatigued a lot of the time, despite good health otherwise. I think this was my body trying to fight the tumor, or at least reacting to it. If I had to do it over again, I'd have asked for a biopsy before they removed it.
I'll be praying for you and your family Fran, and I thank you for sharing your story. Know that you can beat the odds, no matter what the doctors say - there are plenty of examples of that - Reach seems to be one of those cases!
I'd encourage you to find out what type of cancer you are dealing with, and look around for resources on it. I ask all manner of questions when I see my doctors, and I find some solace in my research.
Last edited by Administrator; 11-30-2012 at 10:44 PM.
I am scheduled for surgery (2nd one) mid December to remove more tissue for pathology to examine, and to take wider margins. Based on the outcome of this, they will plan out my treatment to come - radiation seems to be the most likely possibility. Based on what I know at this point, chemotherapy would come into play more if they feel the tumor has spread. From the imaging at least, there does not seem to be evidence of that. From the ACS, it appears that doxorubicin is the chemo drug usually administered for soft tissue sarcomas. I'm wondering if any of you have experience with that and could tell me what to expect.
I did learn the size of the tumor removed, and it was 11x8x6cm, so fairly large. It was located on my left hip, and only recently started protruding. It was believed to be a lipoma upon removal, until pathology showed it to be otherwise.
For those of you who went through radiation treatment, did you do the conventional beam, the proton beam or did you undergo brachytherapy with the radioactive pellets?