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New here, need support

taksilver
Posts: 4
Joined: Mar 2008

I am a 32 yr old married mom that has recently been diagnosed with recurrence. I had a radical nemphrectomy in Sept. '06. I had an 8 cm tumor. Now the cancer is back in a muscle in my back near my bowel. At this time, I don't know if surgery is an option. Nodule is 1.8cm at last scan, Jan. 23. Does radiation work? Have any encouraging words?

anniec
Posts: 18
Joined: Mar 2008

Hi, I'm also new to the boards, seven weeks into my recovery. Stage 1 grade 2 clear cell, right kidney. I had a partial, at memorial sloan ketering, in nyc. my tumor was 7 cm. not in any margins or lymph nodes. Sorry to hear of your cancer returning. How did you know of it's return.

taksilver
Posts: 4
Joined: Mar 2008

I had stage 2 grade 3. I also had clear cell, slow growing (as is now) and had my entire right kideny removed. Tumor was contained, no lymph node involvment. Also extra fat and muscle taken and tested all came back clean. I knew something was wrong in Jan. when I felt persistant fatigue. I felt like my arms and legs had been dipped in cement. I was persistant in going to the dr. I kept going to a clinic around here cuz with my work schedule it was hard for me to get to my primary. They kept telling me I was fine. I found out in Jan. that my nodule had been there 9 months already and my drs had been watching it. The radiologist said it was scar tissue and forget about it. I sent the results to my urologist, who sent me to an oncologist, who sent me to a group of specialists at UNC. It has been a total of 18 months since I had my kidney out with 9 months cancer free and 9 months recurrent. My specialist says this type of cancer keeps coming back. It could be 6 months later or 10 yrs later, but it does come back. A high percentage anyway, I guess. I feel confident that all will be fine, but I worry about what the next time will bring. Just lookin for other survivors/patients to connect with.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

You are so YOUNG! But please keep the faith! I had my initial diagnosis in early 2001 with a radical left nephrectomy ++ fat, lymph nodes, etc. All clear. Had an early breast cancer dx in 2005 where they found (incidentally) a lung mass. It was metastasis from the kidney and had the lower lobe removed surgically. Am now 2 years tumor free (again) and hanging tough! My oncologist, surgeon(s) and primary all say that as long as they can surgically remove whatever shows up, I'm good to go. I will pray that they can go in and get this and that you too can continue 'keeping on'. Take care! And be strong!

unroxy
Posts: 7
Joined: Mar 2008

I'm new here too; had my lefy kidney taken out alomost 4 weeks ago (rcc/papillary type - 7cm, stage 1). The doctor said I was lucky that the tumor was contained. I have to go back every 4 months for follow-up appointments. I get parinoid now, everytime I feel anything on my right-side (kinda want to keep my right kidney :0). Did anyone else feel aches/pains where they didn't before, after the nepemphrectomy?

tbado
Posts: 11
Joined: May 2008

My understanding is that radiation does not do well for kidney cancer. I had 1 year no growth on Sudent, and am now on Toricel which is the first stuff in about 8-9 tries to produce shrinkage!! Most treatments will be a matter of odds (you will be in the percentage that a particular course helps or you will not) In which case you move on to the next one. In selecting a treatment ask one major question - how is this stuff supposed to work? (get someone with medical knowledge to go with you if it helps) If it makes sense try it. Other than that try to live your life as normally as you can, accept that there may come a time when there are some things you cannot or should not do - thats just part of it (just say oh well and do not let it make you less of a person)last bit of advice similar to soldiers there are no atheists with cancer (at least none that I have come across). Hope this helps FYI- mine was stage 4 in Oct. 2003 - rt nephrectomy with mets on both lungs. I am a married dad with kids.

smurfin57
Posts: 22
Joined: Sep 2009

I am a new compatriot, and what you said about being married with kids hit me. I hope you are well and strong. How are things going? I am still waiting for my surgery and of course very scared.Any words of encouragement? Thanks Steve

frank kirkey
Posts: 8
Joined: Oct 2009

Hi,Just wanted to wish you luck.My surgery was 3-13-2009.I had stage 2 kidney cancer lost quarter of kidney plus large mass lower right kidney.Cleaveland Clinic.I was back to work after 2 months.If you have any questions sure be glad to answer.Thanks Frank

4yellowrose
Posts: 3
Joined: May 2008

Hey I hear you, I was just diagnosed and will only get full details on Monday when I get a second opinion from a urologist. Thinking they will suggest partial laparoscopy and no matter what they do the word CANCER is a scary one. I have this constant pain between the shoulder blades like someone pushing their thumb in that spot with pressure, my lower back doesn't take much to get tired and painful and although only one test showed a nodule in my lung they are ignoring that fact because Xray showed nothin only CT. What a scary ride and only people like us can understand our fear. I try to remain positive by thinking of the less fortunate and be proud that contrary to lots we have health care to go to. It's the unknown that I fear for. Want to wish you the best my dear and hope we will find the support we need on this site. Cheers from Canada

JohnMPrice
Posts: 3
Joined: Jun 2008

I wish you the best of luck and health! I am living in Germany and had a stage 2, 8cm tumor on my left kidney which had to be removed as well as my adrenal gland a surrounding tissue. Been 10 month's still a bit nervous though. Keep strong thoughts, keep your will strong and fight the good fight God Bess YOU!!!

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