Wilms Tumor Survior
Comments
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depressionmean56 said:Hi all!
I am a 53 year old
Hi all!
I am a 53 year old wilms survivor. I was diagnosed at birth and had my kidney removed and treatments when I was 2-3 months old. I have a vague memory of some treatments and always thought there was nothing I couldn't do. I was told that I would not have children - I have 3 & 2 grandchildren. After I read your posts, I realize I have side effects from the disease; scoliosis, uneven body, abdominal/intestinal issues - those I always knew. I did not relate my chronic depression with the disease. I can remember blowing out the candles on my birthday cake when I was 4 and wishing to be happy. The depression has been the most debilitating for me. It's an oxymoron being a "survivor/suicidal". I have worked my tail off since I was 15 doing real battle with depression. I have had tons of therapy & I knew at 15 that I must have a chemical imbalance. I have tried some anti-depressant meds (zoloft & effexor) but I am not comfortable with the lack of knowledge of depression. It's frustrating - but if depression is a true side effect of the willms tumor battle, we might be on to something. I would love to hear what you all have to say about this side effect, especially success stories! I am proud to be a survivor - just so tired of the depression battle!
I believe that my daughter has a little of that. she is not very social and is sensitive to things. she shuts herself out and doesnt share things such as feelings or anything. It could be a teen thing but sometimes I think there is more too it. she writes her feelings down and when I can I read them and try to talk to her about things without letting on I have read her thoughts. I have to do this in order to know whats going on in her head... what to do to help her open up to me and to others???0 -
Spine Responsekarlaanne said:spine
Lori,
I am courious did you have the curviture in your spine before kids? my daughter is 17, a wilms surviver, they took her kidney and also had radition treatment.... she has a curve in her spine and after seeing an othopedic surgeon she was told that she was done growing and that her spine will not change anymore; being that I work with PT's and see patients coming in with spine issues I worry that my daughter if she does have kids will have the same issues that you are experiencing.... ugh! I wish that I could know what to do or ask when we see her doctors. I love this site and being able to talk to people going through the same things. did you have restrictions growing up? weight limit due to stress on heart? I too am interested in others that have or are going through same... thanks and good luck Lori
Yes, I've had the curvature of my spine since the removal of my kidney when I was 3. As for restrictions, I was never allowed to play contact sports (no softball, yes to volleyball though - thank goodness because I didn't like track). I never had a weight limit. And that was it.
I wish someone emphasized how important core and back strength was (in my teens and 20s) to better assist me with everyday activities and future pregnancies. Looking back, I wish I knew about better posture and core strength. I was great at cardio and basic exercise stuff, but that really didn't make me strong, just "in shape". With the weight gain and the lower back pain that comes with it, I was not prepared. If I could go back in time I'd probably invest in a pilates program (with a physical therapist or expert instructor) or really work on a daily core and back exercise program (which I'm currently doing now, which is alleviating the pain and I believe will heal me over time). Also, it really helped that my physical therapist worked with me through the Schroth scoliosis treatment method. It helped me align my spine and work from optimal positions to build strength. So, my only advice is to emphasize strength in major and supporting muscles that surround the spine. There's a good chance that your daughter will be fine during pregnancy, but being physically strong in the right areas beforehand will probably ensure the best outcome.
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Wilms tumorjanice17 said:wilms tumor
h.i i hope you still check the board as well.l am 47 and had my left kidney removed 46 years ago. when i was 17 months old, it also was a wilms tumor. they gave me a week to live, but im still here. l also have two children but was told i would never have any. l also have lots of medical problems. hope you reply and we can share stories or just talk. thanks janice
Hi Janice
Hope we can be friends my daughter is now 6 she was diagnosed with wilms at 5 years old. Hope you are feeling well hope to hear from you soon
Rick0 -
Hi, I'm 17 years old...I waswilms_pa said:Wilms Survior
Hey everyone, I am a 24 years old and was diagnosed with a wilms tumor at age 14 months. I don't remember anything about it and only know what my parents had told me. As the story goes I had not been voiding and "just not doing right" I think they brought me in with a fever as well. Luckily the doc that I went to had seen the exact same case 2 week prior and was pretty sure he knew what I had. They shipped me off to a children's hospital that day and had surgery the next. I underwent chemo and radiation and everything went routine.
I had a pretty normal childhood and had no problems until about puberty when I had adhesions from the scar tissue. It took the doctors awhile to figure out what it was but eventually had them cut out. Other than that I have had no problems that could be contributed to the cancer or treatment. I have been able to play all kinds of sports growing up but currently I think I am going to try and stay away from bullfighting and kickboxing;). Overall I would say I am currently in excellent health and I love to hear from people with all kinds of stories and experiences.
Hi, I'm 17 years old...I was diagnosed with wilms tumor when I was 15 months old. I had a nephrectemy(spelling?) and was on Chemo thereapy for 6 months. I was on achtinamiacinde and vencristine, and was allergic to achtinamiacinde so they put me on adrianmiacin(an older drug)
I am cancer free now, but ever since I was little I've had this thing I call a "fat pad" it's a mass in the middle of my abodmen under and surrounding my belly button. I loose and gain weight under it.I have had it my whole life, but in the past month it's grown and I know it's not me gaining weight because I've lost weight. Even when I lay down it is clearly visible and you can see my pulse in my stomich. I've been to three or four doctors about it and no one has been able to figure it out and nothing shows up on an ultra sound.
Has anyone else had this problem? Please let me know!0 -
Hi,beccabee said:Hi, I'm 17 years old...I was
Hi, I'm 17 years old...I was diagnosed with wilms tumor when I was 15 months old. I had a nephrectemy(spelling?) and was on Chemo thereapy for 6 months. I was on achtinamiacinde and vencristine, and was allergic to achtinamiacinde so they put me on adrianmiacin(an older drug)
I am cancer free now, but ever since I was little I've had this thing I call a "fat pad" it's a mass in the middle of my abodmen under and surrounding my belly button. I loose and gain weight under it.I have had it my whole life, but in the past month it's grown and I know it's not me gaining weight because I've lost weight. Even when I lay down it is clearly visible and you can see my pulse in my stomich. I've been to three or four doctors about it and no one has been able to figure it out and nothing shows up on an ultra sound.
Has anyone else had this problem? Please let me know!
I just joined this
Hi,
I just joined this discussion today. I had my Wilm's tumor removed when I was 3 yers old. I am 46 years old now. I do not have the "fat pad" on my stomach as you do, but I certainly have a fat pad on my right side (the opposite side of my kidney removal). It never goes away, and is quite noticeable when I wear certain clothes. I also have scoliosis, which make the area look even larger. There are many things that can not be explained with Wilm's Tumor. Thank goodness for this discussion group...at least if you post something there is a possibility that someone else has a similar situation.
Take Care
Yvette0 -
Wilms SurvivorB-ALIVE55 said:Hi! Am a female in my mid-50's, a survivor of 53+ years of a Wilm's tumor that took my right kidney at age 2. It was by accident that our family doctor found it as my brother was very ill and doctor checked me over, too, and found the mass.
No chemo in those days; after surgery and several deep X-ray treatments, I was eventually declared cancer-free. Was told I was among the youngest to have gone thru this, and that 90% of children died from this carcinoma in those days.
However, the treatments damaged my body; hence, I was unable to have children and have several other health conditions as a result. But isn't life a trade-off sometimes?
My right kidney was removed at the age of 4 in 1952. At this time there was a 2% survival rate past the age of 2. The earlier it is discovered the better. I too had the x-ray treatments. I had no problems what so ever. The only possible side effect was I developed benign tumors in my thyroid (which had to be removed) and they said this may have been due to the x-ray treatment.0 -
Hello everyone,
I am 22 years old and I live in The Netherlands.
I never got into contact with other people that had a Wilms tumor.
This is my story:
I had a Wilms tumor when I was 2 years old.
Because the tumor was pressing my intestines I had big belly pains and problems with going to the toilet. At that time no one knew this was because of a tumor pressing on my intestines. One day my mom picked me up from a friend's house and touched my belly and noticed a big bump. The first doctor she went to said I had an enlarged liver. When I got to the hospital they did all kinds of test and found out it was Wilms tumor. I had chemo, then they removed my right kidney, after the operation I also had chemotherapy.
I now go to the hospital every 2 years, because I take part in a research program for late effects in people that had childhoodcancer.
I never had any big problems after my cancer, except that I am always tired. I can't do the same as friends of my age, because I get too tired. I also never liked to do any sports, because it wears me out completely. I wonder if anyone else recognizes this feeling of having no energy and always being tired.
Stefanie0 -
Wilm's Tumor Survivor
I am a 33 yr old Wilm's Tumor survivor. I was diagnosed at the age of 2 with a wilm's tumor when I was going in for a xray. The only reason they found it was because the breathing tube that they had placed down my throat I pulled out. I went through surgery where they almost cut me completely in half to remove my kidney, adrenal gland, and the tumor. I later had to go back in and have a section of my small intestine removed due to a bowel obstruction. I don't remember much about what I went through but I do know that all the medication I was on was experimental. I am finding now that there are some side effects that are popping up that they were not aware of. I am curious as to what kinda side effects I have to come. I have the hip pain, some female issues, and degenerative disc. I am wondering if anyone else is having the same effects or if my doctors are wrong and this has nothing to do with the medication. I do know I was told that I would never have kids and I have three blonde hair, blue eyed girls who run my life (one of which is autistic). I was released from a doctors care at the age of 18 and as of today have not had any relapses! I feel I was lucky and had someone on my side. I hear everyday of kids who are diagnosed with cancer who do not make it and it upsets me.0 -
fat padbeccabee said:Hi, I'm 17 years old...I was
Hi, I'm 17 years old...I was diagnosed with wilms tumor when I was 15 months old. I had a nephrectemy(spelling?) and was on Chemo thereapy for 6 months. I was on achtinamiacinde and vencristine, and was allergic to achtinamiacinde so they put me on adrianmiacin(an older drug)
I am cancer free now, but ever since I was little I've had this thing I call a "fat pad" it's a mass in the middle of my abodmen under and surrounding my belly button. I loose and gain weight under it.I have had it my whole life, but in the past month it's grown and I know it's not me gaining weight because I've lost weight. Even when I lay down it is clearly visible and you can see my pulse in my stomich. I've been to three or four doctors about it and no one has been able to figure it out and nothing shows up on an ultra sound.
Has anyone else had this problem? Please let me know!
I to have the same thing. When they did my surgery they cut me from my left side to my right side. I have the same problem losing weight, that area seems to stay. I consulted my doctor when I had my gallbladder removed and he said it was because it was scar tissue and the only way to remove it is a cosmetic procedure (which most insurances won't cover). I was also on adrianmiacin and atinomyocin-d. Watch for the side effects. They are finding out now that the adrianmiacin is causing premature menopause and hairloss. I am glad I found this site. I don't know many people that have had or even know what form of cancer a Wilm's Tumor is. I find myself having to explain it to everyone, including some doctors. Thank god I am a nursing studet!0 -
fat padbeccabee said:Hi, I'm 17 years old...I was
Hi, I'm 17 years old...I was diagnosed with wilms tumor when I was 15 months old. I had a nephrectemy(spelling?) and was on Chemo thereapy for 6 months. I was on achtinamiacinde and vencristine, and was allergic to achtinamiacinde so they put me on adrianmiacin(an older drug)
I am cancer free now, but ever since I was little I've had this thing I call a "fat pad" it's a mass in the middle of my abodmen under and surrounding my belly button. I loose and gain weight under it.I have had it my whole life, but in the past month it's grown and I know it's not me gaining weight because I've lost weight. Even when I lay down it is clearly visible and you can see my pulse in my stomich. I've been to three or four doctors about it and no one has been able to figure it out and nothing shows up on an ultra sound.
Has anyone else had this problem? Please let me know!
I to have the same thing. When they did my surgery they cut me from my left side to my right side. I have the same problem losing weight, that area seems to stay. I consulted my doctor when I had my gallbladder removed and he said it was because it was scar tissue and the only way to remove it is a cosmetic procedure (which most insurances won't cover). I was also on adrianmiacin and atinomyocin-d. Watch for the side effects. They are finding out now that the adrianmiacin is causing premature menopause and hairloss. I am glad I found this site. I don't know many people that have had or even know what form of cancer a Wilm's Tumor is. I find myself having to explain it to everyone, including some doctors. Thank god I am a nursing student!0 -
my son is diagnosed with wilms tumorJGEARHART0004 said:Wilm's Tumor Survivor
I am a 33 yr old Wilm's Tumor survivor. I was diagnosed at the age of 2 with a wilm's tumor when I was going in for a xray. The only reason they found it was because the breathing tube that they had placed down my throat I pulled out. I went through surgery where they almost cut me completely in half to remove my kidney, adrenal gland, and the tumor. I later had to go back in and have a section of my small intestine removed due to a bowel obstruction. I don't remember much about what I went through but I do know that all the medication I was on was experimental. I am finding now that there are some side effects that are popping up that they were not aware of. I am curious as to what kinda side effects I have to come. I have the hip pain, some female issues, and degenerative disc. I am wondering if anyone else is having the same effects or if my doctors are wrong and this has nothing to do with the medication. I do know I was told that I would never have kids and I have three blonde hair, blue eyed girls who run my life (one of which is autistic). I was released from a doctors care at the age of 18 and as of today have not had any relapses! I feel I was lucky and had someone on my side. I hear everyday of kids who are diagnosed with cancer who do not make it and it upsets me.
my 1 yr old son is diagnosed with wilms tumor , if u please have any info relating to the cause medicines of any system based homeo , allopathy , herbal anything please forward it to my email sosmanpasha@gmail.com , his operation is there within this day ,0 -
cobalt treatmentsKATLYNN said:WILMS TUMOR SURVIVOR
Hi Joe and all other survivors,
I am trying to find some information for my brother who had surgery for a Wilms Tumor in 1966. He had cobalt treatments before and after the nephrectomy. 2 months ago, he had surgery to repair a fistula (abnormal hole) between his stomach and colon. Therefore, all his food was literally passing straight through him and he was suffering from malnutrition. Since the surgery-which was not successful-he has developed a hole in his stomach that is exposed to the outside and will not heal due to the radiation damage to his abdomen. He is scheduled to begin hyperbaric oxygen treatments tomorrow to help with healing.
I'm wondering if any of you guys have experienced any problems with unhealthy bowels; malnutrition due to radiation damage and what your experience has been. I am very concerned about my brother due to the malnutrition issues.
He is about 4'8" and weights about 63 pounds. He is 44 years old. He has double scoliosis. He has the best personality and outlook on life. He just wants to feel good again and be around his family at home. He has been in the hospital since his surgery 2 months ago.
I would appreciate any info.I too had cobalt treatments. I was born with a wilms tumor and they discovered it when I was 8 months old. When they removed it, it was the size of a grapefruit and weighed 1 1/2 lbs. The cobalt treatments did a lot of damage to my right side. I have scoliosis and muscle atrophy on that side and have never developed any fat cells at all where they did the treatments. I also have had unhealthy bowels all my life. I have IBS, high blood pressure, and am also diabetic now along with other health issues. I have always wondered if others have had the same digestive problems I have. I am 5'4'' and weighed 98lbs. until 8 years ago when I finally gained weight from a side effect from medications I was put on. I will be 44 years old this Feb. and have survived cancer twice (I was 2 1/2 years old the second time and only have GOD to thank for the cure). One thing I have learned is not to eat food that has been processed, premade, or package with lots MSG, Whey or other fillers and additives from stores. The only take out food I can eat anymore without getting sick for days is sushi and it is to costly to have that very often. I have never been able to find out until finding you on this site, if anyone else had problems with unhealthy bowles and nutrition. I hope that the hyperbaric treatments helped him.
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Hi I am a Wilms Tumor survivor discovered at age Two and half in the mid 1960's. I have had deppression through out my life. It spread to my lung but was fortunate that I did not get Scoliosis but the bones and muscles tissue where I was radiated where the kidney was and on my chest which caused me to have really uneven breast. I got a breast implants when I was 14 yrs of age. Fortunately insurance covered it as a pre-existing condition. Diet is very important. Coffee and alcohol tobacco and any toxic drug weather it be prescription or street drugs are harmful to your kidney as well as your mental health. Learning about health and psychology is important for people who have had Cancer. Having worked in the medical field I learned that the medical establishment is not always what it should be and there is corruption. I realized that the chemo and radiation really did affect my cognizant ability and depression and a hectic life has taken it's toll on me. If I had the choice when I was young to not save me I would have said let me die. This world has so much evil , ignorance on top of the fact that the Creator that designed the Universe made it very difficult to survive. Which I believe is Demonic. At times I think it is better not to exist than to exist.
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I’m 46 and was diagnosed at age 2 with a tumor the size of 3 grapefruits on my left kidney. I had surgery , chemo and radiation. I’ve had many complications since- including a seriously decreased heart rate during childbirth (but I have a perfectly healthy 21 year old son now!) and cardiac arrest resulting in 53 minutes of cpr due to a weaken heart’s reaction to a blood pressure drug. It’s been such a long road physically, mentally and emotionally. Bless the angels that have treated us. I just wish they were given more mental resource support for themselves and for us. This is something that will never leave us. We will always be haunted by what happened to us
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