Cancer Survivors Network - Wilms Tumor Survior - Comments

my son is diagnosed with wilms tumor

Syed Osman Pasha — Sat, 17 Dec 2011 05:32:51 -0500

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 ,

fat pad

JGEARHART0004 — Wed, 14 Dec 2011 18:53:01 -0500

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!

fat pad

JGEARHART0004 — Wed, 14 Dec 2011 18:48:49 -0500

Wilm's Tumor Survivor

JGEARHART0004 — Wed, 14 Dec 2011 18:42:09 -0500

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.

Re: Wilms tumor survivor

Stefanietje — Fri, 16 Sep 2011 10:13:22 -0400

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.

Stefanie

Wilms Survivor

Lynnette05 — Tue, 23 Nov 2010 09:06:21 -0500

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.

Hi, I just joined this

YDH — Thu, 28 Oct 2010 12:28:55 -0400

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
Yvette

Hi, I'm 17 years old...I was

beccabee — Wed, 27 Oct 2010 21:15:14 -0400

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!

Wilms tumor

erin3746 — Sat, 13 Mar 2010 22:30:27 -0500

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

Rick

Spine Response

madaboutkale — Mon, 04 Jan 2010 13:56:10 -0500

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. :)

depression

karlaanne — Sun, 03 Jan 2010 18:08:41 -0500

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???

I would love for you to talk

karlaanne — Sun, 03 Jan 2010 18:02:41 -0500

I would love for you to talk with my daughter who is now 17 and was 4 when she was diagnosed with wilms. It would be great to connect with girls who are going through what she is. do you have facebook? email me at karkar4068@Yahoo.com if interested in connecting with her. thanks!

spine

karlaanne — Sun, 03 Jan 2010 17:59:05 -0500

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

restrictions

karlaanne — Sun, 03 Jan 2010 17:49:27 -0500

did you have any lifting restrictions set upon you because of the stress it would put on your heart? my daughter has a 30 lb weight limit that she can carry... just looking ahead for her. she was 4 when she was diagonsed with wilms tumor and now 17 whats ahead for her... thanks

Hi all! I am a 53 year old

mean56 — Fri, 27 Nov 2009 19:42:18 -0500

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!

Wilms Tumor Survior

LadyJUSA — Thu, 19 Oct 2006 00:32:41 -0400

Hi. I'm 25 and I was diagnosed with a wilms' tumor at the age of 4 through a series of events.

I was hospitalized for a routine appendectomy. My appendix was removed but after recovery I still had severe abdomonial pain.

I was again hospitalized and had an exploritory operation. They discoverd that my intestine had twisted and during the operation it burst.

Apon repair they had accidently discovered a tumor in my right kidney. My Kidney was removed and sent off for testing and I was later diagnosed with a wilms tumor.

I would like to hear from other Wilms' Tumor Surviors. I am interested in their stories.

Thanks.