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dealing with recurrecnce

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

I have just had routine scans which showed 3 tiny spots on my right lower lung. I had 4 rounds of chemo which ended in frb/09 surgey on my other lung and 35 rads to the primary site. All scans were clear in feb and july. I have done it all and it still came back. I will start chemo again in 1 week. I am scared,angry depressed and many othe emotions. I was just getting back to life...my hair had grown back , i was back to work and wham!!! Here we go again. I am very afaraidi am not strong enough to do this my body has already been through so much. I am truly scared for my life!! Any help from other that have had recurrence please help

Leanne

Marvusman's picture
Marvusman
Posts: 22
Joined: Sep 2010

Hi my name is Marcus and would be happy to help ya out. I have had a recurrence so I guess I'm your man lol. When I was 27 I was diagnosed with Leiomyosarcoma the most rare and deadly of the sarcoma's even more than Ewings. I underwent a massive surgery called a whipple. Try saying the word whipple to any doc or surgeon and watch how they cringe it's a beast. They removed a grapefruit sized tumor from my abdomen. So after healing up I went back to what I loved. I trained and rebuilt myself like a madman. I'd cycle 100 miles a day & run 10. I ran a marathon as I used to in the past. I went back to work. Life was AWESOME! Then it hit again just like you. Just under a year later another tumor now in my liver. Another major surgery cut me right through the same scar. Now I am rebuilding myself again and it's harder this time but I am working harder to compensate. Just like you I wonder will my life ever be the same, will I ever be free to only have normal thoughts. Truth is I won't this will always be in my mind and a part of my life. But we can't let fear run our lives. We have one huge advantage as cancer survivors dealing with recurrence. We KNOW we can make it through. We are tested & proven! Imagine going into battle with a bullet proof vest and shield that has NOT been tested? Imagine the anxiety of having no idea if it will stop the bullet? We already know we can and have stopped it. Any fight we go into for the rest of our lives we will have that quiet confidence that I did it before & maybe I can do it again. Never ever ever doubt yourself! They originally gave me a 5% chance of survival and an almost zero chance of returning full strength from the surgery. I came back better than ever! Ran the marathon quicker than I ever had. Just look at Lance Armstrong it was everywhere, lungs, brain, abdomen, lymph nodes, testicle. Look what he did. Remember this. Though hope is frail it's hard to kill. My email is Marvusman@aol.com if you need to talk. Be well Leanne and fight on!

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Thank you for your reply. How did you deal with the fear? I was scared the first time around but just did what I needed to do and got through it. This time I am petrified. I was so scared of recurrence and here I am living it. The hardest part is i feel so good. I am so scared the chemo wont work this time. I just finished chemo tx in Feb and hoped I was done with it all. My body is a little weaker going into it this time so I am a little afraid side affects could be worse. I spend 5 days in hosp. for treatments so being away from family is hard. Your right I do know what to expect but I really did okay the first time through tx I am scared I wont do so well this time. My email is leahaddon@bell.net if you have any more info or pep talk that may help....I start chemo on the 15th.

btill48162's picture
btill48162
Posts: 5
Joined: Oct 2010

Leanne and Marcus,
Like both of you, I too have been newly diagnosed with a recurrence. I was first diagnosed in November of 1996, at the age of 10, with Synovial Cell Sarcoma. Found in my left forearm. I underwent very extensive chemo and rad treatment. I was on a 72 hour drip, my mom was more concerned that the chemo was going to kill me before the cancer. I went into the hospital weighing 90 pounds and after 2 days of chemo I would weigh in at 70 pounds. Very tough on a little girl but I have always been a fighter and stubborn to the core. Doctors looked at me as their miracle! When I was diagnosed, their was only about 100 cases of Synovial Cell Sarcoma in the United States and none in my area. Very terrifying statistics but why listen to the statistics because they do not define you as a human. Cancer-free in 1997 going on 12 years old. Lived through normal teenage years with the quote of "live and learn" and been in and out of love. Now back in love with a guy who has put up with my on and off craziness as a some what wild child for going on 5 years now. About 7-8 years ago I had a nodule come back up in the original location on my left forearm. All the anxiety I had pushed back came rising back up to the top. Every emotion from that past event came flowing in and crashed on me like a huge wave. MRI's for 5 years showed no growth. When I asked my original ortho oncologist about removing the possible "neuroma", as they were calling it, he was against it. See, my original tumor had attached itself to my ulnar nerve so when he did the tumor resection he had to strip the nerve sheath in order to get the tumor out, along with a tendon, artery and alot of tissue. He was concerned that by removing it would disturb the nerve, causing my hand to draw up, which is what was suppose to happen when he originally stripped the nerve. Odds out because it didn't. I transferred to an oncologist locally so we wouldn't have so far to drive. We watched it for 2 more years and agreed that since it was not growing to just leave it be. We stopped further MRI's because they are so very uncomfortable. Everything was fine and then 4-5 months ago I began to notice some numbness in my pinky finger. I put it off because my step-dad was going through alot, in and out of the hospital and has been battling stage 4 Non-Small Cell Lung Cancer for going on 5 years. Tough on my mom? I know right! She is a phenominal lady though :) About 3 weeks ago I went for my MRI, only to find that the nodule we had been watching had grown. I cried and listened to everyone tell me it was going to be ok but deep down I knew what I had to prepare myself for and so I did. I had a very deep conversation with Jonathan, laying it all out for him and preparing him for what he might have to deal with only to hear him tell me that we have already been through so much together and that this was just another speed bump that we would get over. Best man I could have ever asked to meet. I had an open biopsy done yesterday with him by my side, along with my mom and step-dad and in the thoughts of the rest of my family. As I was getting ready to leave and head home, the doctor came by to tell us what he found. A malignant tumor, no surprise for me or Jonathan. Mom was tearing up though and all I could think was how is she going to deal with not 1 but 2 cancer patients now. My answer came easy when I thought of the quote, which I try to live by now, "The will of God will never take you where the grace of God will not protect you." The most important thing I have learned is how to live. Fear will not lead my life because that would be as if I was bowing to the devil. Only faith can take control of my life!

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Hi - I gained strength from your post. You are dealing with so much and I am so happy for you that you have such a wonderful man by your side. My husband is amazing and my recurrecnce has set him back as well. We are scared but will not let it take control. My battle gloves are on and ready to fight again....hopefully for the last time. Take care and stay strong in your journey!!!!

Leanne

angiecarol's picture
angiecarol
Posts: 8
Joined: Aug 2010

Leanne,

I had just finished all my treatments about 7 months ago & so far so good. But that's not the point of me writing this..

Although I haven't dealt with a recurrence, I just wanted to say YOU CAN DO THIS!
I can't imagine how frustrating it is. My cancer coming back is my number one fear in life.
However,
You did it once & you can do it again! Even though you don't think you're strong enough,you are. Hang In There!

I wish you nothing but the best in your battle. and you will win.
--Angie

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Thank you so much....I am scared but getting on my battle gear again to beat it for sure this time. Stay strong and thanks for your encouragement'

Leanne

KaylaGirl's picture
KaylaGirl
Posts: 12
Joined: Nov 2010

I get my strength from watching you guys go through what you have to go through. I'm a grandparent taking care of my 5 yr old granddaughter. My wife and I took custody of her in Sept 2008. She was 3 yr old at the time. In april 2009 she was diagnosed with ostreasarcoma in her left femur. The doctor's decided that amputation was our best option to stop it from spreading. She went through 39 weeks of chemo. We spent most of that time living at the hospital. I watched all these kids that were sick just haveing fun and enjoying themself. Just amazing. But the sad times were behind closed doors. Getting sick, crying screaming etc. I got to tell you. It took alot of my emotions away. I just couldn't stand watching my granddaughter cry. It just ate me up. After chemo, they fitted her for new leg and she started doing very well. I took her snow skiing, and rock climbing. She pretty much would do anything. I really don't think the loss of her leg really bothered her. At least it didnt appear too.\
Sept. 2010 'She was having trouble with her right leg. This scared us, so we had it checked out. Just a month prior to that she had a full work up and everything came back neg. This time the doc said that the cancer came back, but in the other leg. The tumor was is the exact same spot as the other leg. 9 months after treatment ended. They put her on a different chemo treatment this time. Only 6 rounds. 5 days straight every 2 weeks. they say this chemo is hard on the kidneys. We are suppost to also go to md andersons maybe in February. About the leg. The surgeon, who is highly recommended, doesn not want to amputate this time. They say that she has a 25% survival. That is will go to the lungs. He want this little girl to have quality life. He says he can't imagine taking both limbs. So he is trying to get a approval for a total femur replacement and knee replacement. He says that is will be the first of it's kind for this age. FDA is saying that its not a approved proceedure. So we are waiting. Surgery is supposed to be the week of Christmas.
If anyone has some suggestions, we could really use it. I know she is running out of time. The tumor needs to cut out before it spreads.

Back to your story....,sorry

Scared!!!!!!!! WE are very scared for our precious little girl. I can't even imagine how scared she is. She is only 5yrs old. She has lost one leg and is going to probable loss the other.

Also if anyone has info on what happens when it goes into the lungs. Pain, dicomfort, signs to look for.

Thank you for listening,
You are all in thoughts and prayers

Tim

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Tim - I cant even imagine what you are going through. I am 45 and no how rough this is. I have still lived a good life,marriage,children.....5yrs old is not even barely beginning. I thanked god the whole time i have been sick that it was not one of my kids and me instead. A 5 yr old child should not be dealing with this dreaded disease. I am putting her in my prayers. Losing her leg and all the chemo treatments is enough...what more can that little girl handle. The reconstructing sounds interesting and I hope she can get the operation. I am shedding a tear as I write this as it hurts my heart to know she is going through so much.....stay strong.....You are an amazing grandparent!!!

KaylaGirl's picture
KaylaGirl
Posts: 12
Joined: Nov 2010

so sorry to hear about your situation. This disease is just terrible. I just can't imagine what you are going through. I sit back and watch my grandchild go through what she has to do, and I just don't know.
You say that you have spots in your lungs. What kind of treatment will you have to go through?\
They are telling us that Kayla will probable get it in her lungs. That really scares us, because she is so young to have surgery on her lungs.
Stay strong

Tim

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Hi there - seeing a child goe through this is something I cannot imagine. I am 45 and know how hard tx are. I had a lobe removed my left lung last Jan....everthing looked clear until oct.26th....spots on my right lower. Seeing if respnds to chemo again and then surgery may be an option but not sure i would want it. I would probably lose my right lower lobe and that would leave me with 60-65% lung capacity....now people live with less-but its my quality of life I worry about....I want to live...not just survive and say I am here. I did get back to a good routine - back to work - out socializing and WHAM....here I gop again. I am just a little deflated right now. Need to get the fight back. It truly puts my thoughts a little differently when I think if Kayla. Way too young to suffer through this dreadful disease.
I will keep her in my prayers and we will chat again.

Leanne

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Hi there - seeing a child goe through this is something I cannot imagine. I am 45 and know how hard tx are. I had a lobe removed my left lung last Jan....everthing looked clear until oct.26th....spots on my right lower. Seeing if respnds to chemo again and then surgery may be an option but not sure i would want it. I would probably lose my right lower lobe and that would leave me with 60-65% lung capacity....now people live with less-but its my quality of life I worry about....I want to live...not just survive and say I am here. I did get back to a good routine - back to work - out socializing and WHAM....here I gop again. I am just a little deflated right now. Need to get the fight back. It truly puts my thoughts a little differently when I think if Kayla. Way too young to suffer through this dreadful disease.
I will keep her in my prayers and we will chat again.

Leanne

KaylaGirl's picture
KaylaGirl
Posts: 12
Joined: Nov 2010

thank you for posting. I'm really stressed about this whole sitution. Kayla having cancer again. And the doctors only giving her a 25% chance for survival. I guess they think that it will travel to the lungs. Maybe as early as her next set of scans. Which is in about a week. she goes into the hospital for chemo the week after Thanksgiving. So far, we have been home for a week. the longest time ever since she was diagnosed April 2009. she always manages to get a fever and we have to take her to the hospital. They havent discussed surgery yet since the last time. They are having trouble getting the parts for the leg salvage. I would imagine that they will probable have to amputate the leg. Two legs gone. What a drag for Kayla. she is so little and I don't think she will understand.
I have a question about the lungs. What kind a surgery is there for cancer in the lungs?? Do they have to open you up for this, or can they do a biopsy?? Is the surgery painful?? And I hears with this kind of cancer, when they try and remove the cancer sometimes it spreads. Are these good questions???

Thanks agaain

Tim

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Hi Tim.....I can understand the fear you are experienceing. So much to happen to such a little body. Is Kayla responding to chemo?.....If she is than it should not spread to her lungs. They will not remove lung tissue if they feel it is going to keep spreading. I was only a candiate because they felt the disease was under control with the chemo. I truly belive the doctors will only operate on Kayla if they feel it will extend her life. Sometimes when it does spread to lungs if removing tumors are not possible they may do radiation to shrink them but usually for sympton control. It has not spread there yet and may not. They have to tell you where it could spread - that does not mean it will. Once again if the tumors are shrinking with chemo and it does spread to lung - if the chemo stops shrinking them operationg would not probably happen. Ask lots of questions,write everything down....seconmd opinions are a thought. Just keep all your options open and deal with one thing at a time. No spreading to lungs yet is a good thing. Lets deal with the present. Thinking about what "may" happen is too stressful. I have seen bialteral leg amputees grow up and do very well. I really feel if the cancer can be cut out safely do it. My primary tumor was in an area too close to my brain stem so radiation and chem were my only options for my head.

So my advice is : deal with what you know is definite not what may come. It is not in her lungs so worry about the leg. if they can save it great...if not she is little and wcoild adapt to bilateral prosthesis....very tough but kids are so resiliant. If you can get rid of the cancer cut it out. If she is responding to chemo than she will keep on going.

You are an amazing person - keep up yhe strength Kayla will need you....she sounds like an amazing little girl.

Leanne

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Hi Tim.....I can understand the fear you are experienceing. So much to happen to such a little body. Is Kayla responding to chemo?.....If she is than it should not spread to her lungs. They will not remove lung tissue if they feel it is going to keep spreading. I was only a candiate because they felt the disease was under control with the chemo. I truly belive the doctors will only operate on Kayla if they feel it will extend her life. Sometimes when it does spread to lungs if removing tumors are not possible they may do radiation to shrink them but usually for sympton control. It has not spread there yet and may not. They have to tell you where it could spread - that does not mean it will. Once again if the tumors are shrinking with chemo and it does spread to lung - if the chemo stops shrinking them operationg would not probably happen. Ask lots of questions,write everything down....seconmd opinions are a thought. Just keep all your options open and deal with one thing at a time. No spreading to lungs yet is a good thing. Lets deal with the present. Thinking about what "may" happen is too stressful. I have seen bialteral leg amputees grow up and do very well. I really feel if the cancer can be cut out safely do it. My primary tumor was in an area too close to my brain stem so radiation and chem were my only options for my head.

So my advice is : deal with what you know is definite not what may come. It is not in her lungs so worry about the leg. if they can save it great...if not she is little and wcoild adapt to bilateral prosthesis....very tough but kids are so resiliant. If you can get rid of the cancer cut it out. If she is responding to chemo than she will keep on going.

You are an amazing person - keep up yhe strength Kayla will need you....she sounds like an amazing little girl.

Leanne

KaylaGirl's picture
KaylaGirl
Posts: 12
Joined: Nov 2010

Hello again
Long day at the hospital. We had a meeting with about 12 doctors and nurses today. Basically went over everything about Kayla. They are only about 5% hopefully of survival now. They feel that it will spread, and maybe quickly. We had thought that maybe she was going to be given a leg salvage, but they feel because of her life expect that they want to do another byopsy on the 16th and see what the tumor is doing and how the chemo is working. If they find that the tumor is growing, or has more cancer cells, than they are going to do nothing with the leg and bring this back to their network, and try a different type of treatment. If they find that the chemo is working, than they are going to amputate the leg and wait and see what the cancer will do after. Maybe do some radiation than. So sad, she is only 5yrs old. Hasn't even lived. We are still hopefull. So are the docs. WE are really exhausted from all of this. I'm sure Kayla is too.
I will keep you posted.
Thank you so much for talking with me. I really need it

Tim

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

Sorry for taking so long to reply - chemo has been rough this time around and have not been on computer much. My heart is heavy for the choices you are dealt with such an innocent little soul. The doctors do not sound optomistic but I am a beliver in miracles and success. Love her with every breath you have. Be with her and help her fight. How is she through all of this treatment and doctors. Being 45 is hard enough to understand but at 5 it must be so confusing. I know the professionals are excellent dealing with kids and i hope she has some painless moments that she can smile and be a kid. Are you getting counselling? This is a huge impact on your life and I cannot begin to tell you how to deal with it. As the patient you just do the treatments and follow the doctors/your family's support to help just get through the treatments. Caregivers are worth a million but sometimes yhe emotional impact of that has to be overwhelming. Hopefully you have a support system to help you through this tough situation. I see a counsellor and it helps.
My prayers are with you and your beautiful grandaughter. Talks soon

Leanne

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