30 year old female diagnosed with renalcell carcinoma

hi everyone.I am so new at this site but am glad to get chat to people in a similar situation. Oh my where to begin? After reading this if anyone ha a similar experirnce or know of anyone pleas do post!  I am 19 weeks pregnant. I discovered this mass on my right side of myu abdomen on the 11th of December  and was 9 weeks pregnant. so went tomy gp who sent me for a scan (ultra sound) Where the radiologists was stunned to find this huge tumour. Imagine my shock as ihad had no symptoms . no bllod in urine, no weight loss etc. the tumour was seen to be originating from my right kidney. Went back to my doctor and was sent for an mri which could only be done after Christmas 600 Km away from where i live(the joys of living in Africa). Mri reveleda well encapsulated retroperitoreal mass originating from the kidney. the doctopr didn't want to say what it was but said it didn't look good. anyway to cut the long story short had a radical nephrectomy as opposed to the original plan of a laprascopic one.Tumour was too big. OP went well and 2 days post op the dr  came in to tellme the pathologist called and told him the tumour was kidney cancer. well it took me a bit by surprise i guess as much as you may suspect the actualdiagnoses throws one off balance! He said it was kidney cancer but we got it all out. ASo i asked him if i'd need further treatment and he said no, but fior such a huge tumour i am not convinced. Anywway i go for my review on Saturday the 21st of Feb and will also get my pathologists report. I feel so itchy all over lately and have these nerve pains all over wonder if it's the cancer or what. sadly every little symptom becomes suspicious. Let's fight this horrid disease. it's rare and common amongst olde men not women well all that is wrong in my case or am i just unfortunate. i do pray that the urosurgeon got all the cancer as i have a 5year old girl to raise and alittle miracle who is thriving at 19weeks . against all odds. please write back anyone with anything at all forme. seeing as this cancer is so rare . May be the only one to have it in Botswana Africa. I wonder iuf thewy will even have treatment should ineed it! will pray and keep hope alive! thanks

 

So glad you had successful surgery. In 2004 I had exect surgery on right kidney and was told I was cancer free. Four years later after having CTs every year it showed up in my left adrenal gland and in the rt lung . I am to start on Sutant next week  Good Luck   Nick

hi there,

I am sorry to hear that you were diagnosed with kidney cancer.....I had no blood in my urine either...but had  back pain but..then in hindsight I remember I did have some flank pain  for a couple of months before I was diagnosed...which I had attributed again  to my arthritis and such.....I am thinking that this disease is masked by other generalized symtoms. was diagnosed at 45 and had it out by laperoscopy...thought it was my sore bones,muscles.,etc.. and not cancer.....like go figure....plus I am female and dont smoke....this type of cancer shows mostly in older men with a history of smoking....my tumor was 6.5 cm....stage 3 b......plus you are so young, at 30 years of age to be diagnosed  with cancer and have a full life ahead of you....and the thing is that I was told 2 years ago  that this type of cancer does not respond well to chemo or radiation....when it is in the kidney ....and that is why they do surgury to take it out......

just thought of something...get your liver checked out....

Hi Maree, thank u for ur advice. i did have an abdominal mri just befor surgery and all organs were unaffected but there were some lymph nodes not sure if they willbe positive or not. but my tumour was a giant one 20cm ,maybe the pregnancy hormones activated it,not sure. am waiting to hear the staging when i go 4 my check up! but i guess i amtrying to syke myself up. what i want most now is to give birth tomy baby and then go for cat scan of abdomen again and chest too as i hear this horrid thing has a tendency to go for the lungs. also hoppe to have a bone scan! i do realise that renal cancer does not respond to chmoor radiation, what a pain! i almost wish i had some other kind of cancer as weird as that thought goes.but i guess my only relief is better me than my hubby or baby, coiuldn't handle to see them suffer! I stillhave hope and being a christian  helps me. BUT IT IS NOT EASY! thanks and you can call me jackie

 

On 2/17/2009 more life wrote:

hi everyone.I am so new at this site but am glad to get chat to people in a similar situation. Oh my where to begin? After reading this if anyone ha a similar experirnce or know of anyone pleas do post!  I am 19 weeks pregnant. I discovered this mass on my right side of myu abdomen on the 11th of December  and was 9 weeks pregnant. so went tomy gp who sent me for a scan (ultra sound) Where the radiologists was stunned to find this huge tumour. Imagine my shock as ihad had no symptoms . no bllod in urine, no weight loss etc. the tumour was seen to be originating from my right kidney. Went back to my doctor and was sent for an mri which could only be done after Christmas 600 Km away from where i live(the joys of living in Africa). Mri reveleda well encapsulated retroperitoreal mass originating from the kidney. the doctopr didn't want to say what it was but said it didn't look good. anyway to cut the long story short had a radical nephrectomy as opposed to the original plan of a laprascopic one.Tumour was too big. OP went well and 2 days post op the dr  came in to tellme the pathologist called and told him the tumour was kidney cancer. well it took me a bit by surprise i guess as much as you may suspect the actualdiagnoses throws one off balance! He said it was kidney cancer but we got it all out. ASo i asked him if i'd need further treatment and he said no, but fior such a huge tumour i am not convinced. Anywway i go for my review on Saturday the 21st of Feb and will also get my pathologists report. I feel so itchy all over lately and have these nerve pains all over wonder if it's the cancer or what. sadly every little symptom becomes suspicious. Let's fight this horrid disease. it's rare and common amongst olde men not women well all that is wrong in my case or am i just unfortunate. i do pray that the urosurgeon got all the cancer as i have a 5year old girl to raise and alittle miracle who is thriving at 19weeks . against all odds. please write back anyone with anything at all forme. seeing as this cancer is so rare . May be the only one to have it in Botswana Africa. I wonder iuf thewy will even have treatment should ineed it! will pray and keep hope alive! thanks

 

Stay positive.  I am a 51 year old female who had/has RCC.  I had my left kidney removed at age 40 when I found out I had RCC, clear cell, stage 1, totally encapsulated, had not spread, cured!  It has just returned after 11 years & have started a chemo pill called Sutent.  They have come a long way since 11 years ago & there are treatments now available for RCC & more coming.  Stay strong.

Joanne

I am sorry to hear about your diagnosis. My husband was diagnosed last year at 24 years old with stage 4 collecting duct. Come to find out it was hereditary. HLRCC. There were NO signs, nothing. No one in the immediate family had this type of cancer. His great grandmothers brother died of kidney cancer at an early age but HLRCC was not known back then. We have a 20 month old son also. My husband was in the Naby and about to go to the middle east for the 2nd time right before they found this mass on his left kidney. I never imagined he would have cancer. I hate to see him like this. I never knew anyone with cancer. When they told us it could be cancer, I thought for sure there was a cure for what type he had. How does a young man who is in such great shape get cancer. To my surprise, this was just one of the worst kinds to have. No standard medications, very aggressive, no cure. Even with all this bad news I just know that we will find something. I am not nyeve about the tough road we have ahead, but we will continue to fight as long as we can. I know there are meds that have shown some promise with HLRCC so thats our next step. HLRCC has only been identified in the past 8 or so years. When I looked into his HLRCC there are so many signs and symptoms that go along with it and only about 15% of the people with it actually develop cancer. My husband had absolutely no signs or symptoms until he was at stage 4. He started vomiting all the time for no reason. Well, I wish you and your family all the best and yall are in our prayers. Thank you for listening to my story. Respectfully, Jennifer

Hi Jennifer, sorry to hear of your husband's diagnoses. my advice to you is stay positive and do all u can to fight this horrid monster of a disease. Don't give up ever! it's really sad that young people get diagnosed with this horrid disease which they say is mostly found in elderly men. well... All i can say is fight? whatever it takes do it tiogether with yur hubby, am praying for yu. jackie

 

hi all. i got my pathologists report on the 21st as i was saying in the orighinal post wellmy tumour size was smaller than the mri had stated.it was 15x11x7cmwith a mass weighing 138 grams. It was confined to the right kidney and staged to be fuhrman nuclear grade 2 and robson stage1. I must say i was a bit relieved and am praying hard that all the follow up will be clear! it's really difficult livuing with having had rcc because each day you think of it;s return but i guess we shiould just live life and stay  positive! my advioce to all of us in this situation especially to myself!

 

On 2/17/2009 more life wrote:

hi everyone.I am so new at this site but am glad to get chat to people in a similar situation. Oh my where to begin? After reading this if anyone ha a similar experirnce or know of anyone pleas do post!  I am 19 weeks pregnant. I discovered this mass on my right side of myu abdomen on the 11th of December  and was 9 weeks pregnant. so went tomy gp who sent me for a scan (ultra sound) Where the radiologists was stunned to find this huge tumour. Imagine my shock as ihad had no symptoms . no bllod in urine, no weight loss etc. the tumour was seen to be originating from my right kidney. Went back to my doctor and was sent for an mri which could only be done after Christmas 600 Km away from where i live(the joys of living in Africa). Mri reveleda well encapsulated retroperitoreal mass originating from the kidney. the doctopr didn't want to say what it was but said it didn't look good. anyway to cut the long story short had a radical nephrectomy as opposed to the original plan of a laprascopic one.Tumour was too big. OP went well and 2 days post op the dr  came in to tellme the pathologist called and told him the tumour was kidney cancer. well it took me a bit by surprise i guess as much as you may suspect the actualdiagnoses throws one off balance! He said it was kidney cancer but we got it all out. ASo i asked him if i'd need further treatment and he said no, but fior such a huge tumour i am not convinced. Anywway i go for my review on Saturday the 21st of Feb and will also get my pathologists report. I feel so itchy all over lately and have these nerve pains all over wonder if it's the cancer or what. sadly every little symptom becomes suspicious. Let's fight this horrid disease. it's rare and common amongst olde men not women well all that is wrong in my case or am i just unfortunate. i do pray that the urosurgeon got all the cancer as i have a 5year old girl to raise and alittle miracle who is thriving at 19weeks . against all odds. please write back anyone with anything at all forme. seeing as this cancer is so rare . May be the only one to have it in Botswana Africa. I wonder iuf thewy will even have treatment should ineed it! will pray and keep hope alive! thanks

 

I have a 29 year old daughter-in-law who was diagnoised with Renal Cancer in June 2008. She had her kidney removed July 2008. The sad part is that the cancer was already in the lymphnoid and could not be removed as well as now it has metastisised to the liver. At some point she became pregnant and decided to carry the baby. She delivered by c-section in early Feb. 2009, and the baby is holding on, however she is weakening by the day and just received Sutent from her physician.

Looking at her condition now and the side effects of the medication I feel that she will rushing to her death however; she is contenet in trying anything since she has nothing to loose. I explained that she should spend time with her 5 children instead of rushing what might come at a later time.

Prayer changes things, but the doctor's are saying it would have to be a miracle. God works miracles too!