I posted a while back when I relapsed in less than 6 months…went to JH and was hospitalized for 5 days, pulse steroids etc…EMG/nerve conduction, PFT’s and echo all done. Came home on pred 60/day and MTX 25mg/week, slowly getting strength back. Had colonoscopy today and found a very large tumor in my descending colon…I am floored. Waiting on biopsy. It will have to come out either way it is so big. I am wondering about the myositis/cancer correlation I have read about…anyone here have this happen??? Yesterday I was focusing on muscle strength and remission from MCTD/PM/DM now I am afraid I have colon cancer. Trying to stay positive.
Dear Sue,
So sorry to hear this, I'm sure you were shocked! I hope that the outcome is a good one, and that it is benign, and quick healing. It's surely the very last thing you expected, or were prepared to deal with. My good thoughts and prayers remain with you.
Wishing you well,
SK
I'm so sorry to hear this. It may be benign, try to think on that until you know the results, chances are it will be. I've so far been OK, but do have a cyst on my ovary that they are investigating at the minute, I have a scan soon. I'm thinking positive thoughts for you and so hope it's benign. I know you still have to go through the surgery, but you'll get through it, you are obviously a very strong person and can do this.You will get there and be well.
Sue,
I hate that you're going through this. I have heard about the relation between DM and Cancer. I found my doctor does a lot less screening then many others. He basically told me if I have any symptoms then he will have me screened, but I have had a mammogram and I've also had a hysterectomy (so no need to screen the girl parts). I believe I should have been screened for other types within the first couple years of diagnosis (just from what I've read).
I will be praying for you and hope it is benign! I can't imagine how stressed you are right now. Just know we are all thinking of you!!
Nichole, my doctor said the same to me, after the initial screening when I was diagnosed, he said that unless I showed symptoms, the radiation from screening was a greater risk than the DM giving me cancer - saying that Im getting a US scan in a couple of weeks.
Whatever you do make sure you have your colonoscopy....most people have no symptoms until it is too late. It is an easy test to do that could save your life. I imagine if this mass is malignant they will require a full body scan, I did have lung nodules show up in my lung CT at Johns Hopkins...we marked them up to my rheumatological disease, hope that is the case.
I am positive....ready to know one way or the other. My muscles are getting stronger everyday, I know I will beat this and get better soon :-)
Thanks you all for your input and support...makes me feel less alone. Most people can't understand, they see me and say "what is it you have???" How do you explain MCTD and all the overlapping parts...confuses me and I am a health care provider. Since I have a 10 year history of MS everyone assumes that is what is going on, this has been totally different.
Hope to have biopsy results by Thursday...then I will know the next step.
Best of luck Sue x
Suebee, I am so sorry to hear this news. My friend's husband just had surgery this past week for the same. He is doing quite well and in good spirits, and I hope that you will do just as well. Please keep us posted.
When will you know bout the biopsy? Hang in. Keep your chin up…I know they say some of the meds we take for our diseases can cause cancer, but wether it’s true or not, the treatments now are superior to even 5 yrs ago, so please hang in there.
Good news! Found out yesterday that there were no cancer cells found in the preliminary biopsies! Because the mass is so large they were not able to biopsy deep into the mass so it is not 100% but I am thankful for the report. Now we have to figure out how to get it out quickly, I am still taking prednisone 50mg daily due to recent relapse last month, muscles still weak but better. I know they can't do surgery on me with these doses...I will never heal. Not sure how quickly and safely they can get me ready for surgery. Anyone here with an experience like this. I am wondering if this tumor caused the initial myositis incident last October?!? From my reading there seems to be some sort of correlation between the two. I am worried that the quick taper and the stress of the surgery might cause the myositis to get worse. I am sure they will figure it out. Thankful for the news and hopeful for a good outcome. Placing my trust and faith in God who has carried me through much over this last year. Thanks to everyone here for your support...I hope I will be able to help others with my experiences. Hope to find out today when the surgery will be...needs to be soon or I will become obstructed...it is a very large mass.
I am so glad, suebee. Thank you so much for sharing the good news.
That's fantastic news, I'm over the moon for you. Fingers crossed it is associated with the myositis and removal gets rid of both (wouldn't that be wonderful)
Great news Suebee!! It's possible that getting rid of the mass could get rid of the Myo, you never know, I've heard in cases of Myo with cancer that when cancer is removed the myo does go into remission, so maybe benign masses can do the same…in the meantime positive thoughts and prayers still coming your way!!
suebee58 said:
Good news! Found out yesterday that there were no cancer cells found in the preliminary biopsies! Because the mass is so large they were not able to biopsy deep into the mass so it is not 100% but I am thankful for the report. Now we have to figure out how to get it out quickly, I am still taking prednisone 50mg daily due to recent relapse last month, muscles still weak but better. I know they can't do surgery on me with these doses...I will never heal. Not sure how quickly and safely they can get me ready for surgery. Anyone here with an experience like this. I am wondering if this tumor caused the initial myositis incident last October?!? From my reading there seems to be some sort of correlation between the two. I am worried that the quick taper and the stress of the surgery might cause the myositis to get worse. I am sure they will figure it out. Thankful for the news and hopeful for a good outcome. Placing my trust and faith in God who has carried me through much over this last year. Thanks to everyone here for your support...I hope I will be able to help others with my experiences. Hope to find out today when the surgery will be...needs to be soon or I will become obstructed...it is a very large mass.