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An update 5 years later


#1

Hello,
It has been 5 years since the last time I wrote, which I wish I would have continued, but life certainly happens. No excuse. I not only want to be here for things I need, but I have now been dealing with Synovial Sarcoma for ten years. I am a 53 year old female, and started this battle in my neck. Nothing about my statistic were common. I had original 5 cm tumor in between my carotid artery and jugular vein. My distant recurrence was almost 5 years to the day, and metastasis was in my lung, just as they statistically mention! I did great. I has 45 rounds of radiation on my neck in 2007. Because I had a complete removal of my right middle lung lobe, there were no margins, so no treatment. August I will cancer free for 5 years again.
But I am here to say, there are many many bad LATENT AFFECTS OF RADIATION, especially in the neck, and my friends they do not show up for years. I have been dealing with these issues since December 2015. I was told by the original Physical Therapist in the first hospital I was treated in that I would definitely need the physical therapy, and to continue it NO MATTER WHAT THE DOCTORS SAID! I was younger than, I had never ever had illness before. I did not listen to the Physical Therapist. I listened to the Internist of the hospital I NO LONGER GO TO! (They also missed my lung cancer) Please get Physical therapy right away if the PT tells you too! I have full blown dysphagia (swallowing difficulty), I can barely speak. I had surgery in April to remove a polyp on my voice box, they put a feeding tube in my stomach and started swallow therapy. Because I was 10 years out from radiation, nothing worked! I now had a second vocal cord surgery yesterday (June 26, 2017) I will never get my voice back 100% and do not even know if this is really going to work. I also would like to mention opiate addiction. It obviously is running much more ramp-id i this country than 10 years ago! Years ago there was never a protocol to get you off all the major amount of opiates they give you to get through treatment. I was addicted to morphine for 3 years after treatment and in 2011, I finally got into a treatment program for 28 days to get off it! Today I am TOTALLY CLEAN AND SOBER BY THE GRACE OF GOD, this has helped every-way in terms of chronic illness now! Please write me if you are having any of these type problems! I would really like to be of help to those who are just starting this battle. Especially you parents, I would never ever want my children to suffer what I had. Or if you have very young children and they do not understand what you are going through or what is happening to you, I have been there and understand. My kids were only 5 and 9 when I got this cancer, and their dad passed away 18 months prior. It was a living nightmare!!! Please do not hesitate, I wish I did not, but I have much information on a lot on these particular areas! Thanks you and GOD BLESS all.
Jodie G.


#2

It’s true what you said about radiation. I underwent 33 rounds of radiation on the upper right side of my back and at the time the radiologist assigned to my case never mentioned the long term side-effects of said treament. So, now I am a 24 year old female dealing with Chronic Obstructive Pulmonary Disease (COPD) and have a higher risk of developing breast cancer because of fibrosis in my right breast :confused:


#3

Hi Maria,
I understand. How long have you been in remission. The effects I am dealing with are from 10 years ago. My Doctors never mentioned either. I too have early stages of COPD and emphysema. I quit cigarettes in 1999 but never quit pot until about 3 1/2 months ago. Now I am wondering myself if this is from radiation or the pot. Although you said radiation on the upper back. Do you mind if I ask where you are treated? There may be some things you can do to prevent it getting worse. I am also assuming you have SS also??? Where did it originate. You are only 24. You have a lot more strength than me lol… I was originally treated in U of F, Gainesville, FL which are the ones that told me I did not need physical therapy some not so bright intern there. The physical therapist that I was working with in the hospital warned me to have it no matter what the Dr’s said. At the time I had never been sick and did not know how to advocate for myself. I am now suffering the consequences, that is why if I can help anyone I want too! I am treated at MD Anderson Cancer Center, Houston. I have one of the two leading Dr’s in SS in the country. The other is at Sloan Kettering. I have been there for 5 years. I probably would have not made it if I did not switch there. I just had this throat surgery yesterday at the University of Colorado. Very good Dr and not a cancer issue. I am still followed very closely. Every 6 months. Please tell you a little more about your situation. How did you do with meds after? That hurt me a great deal to my recovery, I got addicted to the morphine for about 3 years. I had to go to treatment in 2011. It took a big toll on my neck because it made me so stiff, morphine chemically tells your head you are in more pain than you are thus causing more stiffness etc! Anything I can recommend to help I am here for you. It is a very lonely road, most Dr’s you come across are more interested in knowing about SS than in you. I also did not know at the time to ask, but my oncologist in Gainesville was a STATISTICS oncologist so I was like the jackpot for him. I know and understand so much more than I did than. Jodie


#4

Thanks for sharing your experience Jodie. All treatments we go through can have long term side effects, more or less nasty and they don’t affect everybody the same way. There seems to be a price for surviving. I had radiation on my right lung in 2008 and a few years later got a breast cancer on my right breast. Of course I blamed radiation for it but who knows? My oncologist told me it could also be due to chemo.
Regarding opoids, I don’t remember being prescribed any for my amputation even though it was really painful. They gave neurontin instead which is supposed to alleviate phantom pain but didn’t seem to work for me. On the other hand, they pushed opoids after every lung surgery I had. They are always concerned that pain may prevent a patient from taking deep breaths and cause pneumonia as a consequence. I can understand the point but I have another take on this. I think the drowsiness from coming out of anesthesia is what prevents the patient from taking deep breaths and since opoids cause drowsiness as a side effect, I feel they are counterproductive. I took percocet after my first lung surgery but quickly stopped because I had side effects I thought were due to it. It turned out the side effects were due to something else but not taking percocet was not making any difference for me so I never took it again.


#5

Hi Elodie,
How have you been? I agree that everyone’s side effects are very different. Unfortunately with regards to opioids with the first and only radiation, I did not know any better as it was 10 years ago and had no clue how it was going to effect me. I had never been sick a day in my life. I wish so much that I would have been given a lot more information about all of the effects of drugs, long term effects of radiation etc. it is such a hard situation. I think for all of us. I also have early stages of copd and emphasia and haven’t smoked since 1999! Although I was a pot smoker until about 3.5 months ago and thought that is what it is from. But someone else just mentioned that they too have COPD which she thinks is from radiation? So now I wonder? I can’t believe the kind of trouble I am having with my throat and neck 10 years later. I just had 2nd surgery on my vocal cords in 2 1/2 months both vocal cords have polyps popping up. I can barely speak and was diagnosed with dysphasia, I just had them remove a feeding tube from my stomach because it made things worse. I still don’t understand at this point why they don’t sit the patient down in these cases, and explain the long term effects, they do know these things will happen now. I never had any of my doctors explain this to me? And I don’t think many other patients are told either. Why is that??? Now your breast cancer makes me nervous to think about breast cancer possibly, I had a complete lobectomy but no treatment. I just wonder what more will happen in the future ??? Hope you are well! Jodie


#6

Unfortunately, knowing about the potential long term side effects only makes decisions more difficult and raises the level of anxiety. It’s not like there was an easy fix or efficient prevention methods. Hopefully one day research will find a way to cure people without side effects so future patients don’t have to go through this…