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dumb doctors
May 22 my husband had kidney stones. We have now met with 3 oncologists Finally the 3rd one says we are stage 4. Advanced and aggressive mestasized. kidney cancer but he is waiting for the pathology slides from the 2012 peration to determine if the primary is clear cell or papillary. So we have to wait another week. Or two…
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What's typical
So I was feeling a little more at ease with my doctor but today they called to set up surgery date and it's September 8th. Is that the norm on the wait for surgery? I was just kind of taken aback mainly because of my leg pain and the fatigue when I had talked to the DR last night he had seemed like it needed done sooner…
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Surgery Preparation
Hi all – My surgeon really needs better admin support. I am a week away from surgery (likely full nephrectomy) and I don’t have any information regarding preparation. Being over 50, I take a 81 mg aspirin everyday but stopped that but am not sure about other medications I am taking such as Simvastatin, HCTZ and Lisinopril.…
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Checking in....
Well guys, I was diagnosed on 29th April 2014 with what my urologist said is that my 2cm lesion on my kidney is likely to be 80% cancer and............ I'm still waiting for surgery. calls to my consultants secretary have resulted in "probably mid July or August" my concern is that it may spread, my consultant said this is…
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Recent surgery
Divinci partial left nephrectomy June 10th. Still swollen, very sore. I am 60 years old. Wonder if this is normal or not? Thanks, God bless
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Hi, Everyone...Newly Diagnosed
Hi, Everyone...I had my right kidney removed on May 22nd 2014 at MD Anderson. I had a 6cm (in greatest dimension) Clear Cell tumor. The path report stated 6cm Clear Cell Stage 1 Grade 2 confined to kidney. Also, no invasion into renal vein, renal sinus or perinephric adipose tissue. No lymphovascular invasion indentified.…
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Question about change in wording on CT Scan
I recently had my 2 year ct scan and on the 6 previous scans involving the lungs it would say No significant abnormality and under impressions it would say no evidence of disease and now its been changed to say- no dominant lung lesions- stable. The doctor assures me it means the same thing but I find it strange. Has…
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Wait and see approach? Thoughts?
Hi, all. I've been on the Colon Cancer board for Stage 3 Colorectal cancer diagnosed in December 2012. Lots has happened since then but original CT showed a mass (1.5 cm) on left kidney back in 2012. Follow-up CT six months ago (after completion of CRC surgery/chemo/stuff) showed slow growth to 1.75 cm. Urologist wanted to…
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Others w/ Papillary Renal Cell Carcinoma Grade ?
All, I have grade 3 Papillary Renal Cell Carcinoma that has spread to my lymph nodes. I posted earlier (the other day) about my situation and I am just looking for others with similar situations, suggestions, advice, etc. I am following up with UNC Cancer Center on 6-27 and have an appointment tomorrow with a competing…
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Doctor's Admin Team is not top notch
Have people encountered problems scheduling and getting call backs? I feel when I was "prospect", the level of service was much better...now that I am a client (surgery is scheduled in 2 weeks) ..not so great service. Also, what should I expect in the pre-op for a laparoscopic (likely complete) nephrectomy? Thanks all -…
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Oncologist visit and next step!
I had a visit with my ever friendly Oncologist yesterday, Dr War. I took my scans, both my recent and previous scan with me for comparison. I was on the edge of my chair whilst she was going through them. The little tuts and groaning noises she makes while looking at them, certainly don't help the stress levels. Anyway!…
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FLMA Advise
Anyone take FLMA? It is my understanding FLMA (Family Medical Leave Act) is offered by employers to allow people to take off up to 12 weeks annually with no pay and be guaranteed their job when they return. It is also my understanding that it doesn’t need to be taken consecutively. Today my thoughts are that me and my…
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I will survive
Hi all, thought I'd check in, now that I'm pretty sure I'm gonna live. Sound melodramatic, maybe, but boy what a doozie this has been! I've been recuperating from the excision of Rosemary's baby, aka a dihiscence, and lets just say, if I live to be a hundred may I never go thru that surgery again!. It's brutal. I've been…
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Good news as long as it holds true
After just having a single follow-up ct scan 3 months after my partial nephrecetomy, my urologist today told me I was certainly cured and that any more scans were completely optional. He did schedule another one for next June but told me it would be quite ok to cancel it if I still felt ok at that time. And so with that I…
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food and other essentials
I am reading and learning a lot. Here are items on my list to buy this weekend for my husband that I wanted to share with other newbies. Please if anyone can suggest quick/easy grab & go items. I'm lacking in things he can pack for lunch. Plus anything else yall swear by that I can get. Most of these came from MD anderson…
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New Tumour was not a tumour
Just got back from hospital appointment . Phred is now NED. They had mistaken tail of his pancreas for a tumour in previous scan. Thankyou for your prayers and good wishes. They must have worked! Hugs Melissa
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Life Saved by Ineffective Primary Care Physician
After seeing my primary care physician several times over a 6 to 8 month period for a runnig related injury I convinced him to do some tests. He was content to just keep telling me to take time off from running. I thought I needed an MRI of my pelvic area to see what was going on but he suggested getting a CT Scan. Good…
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Staying positive is becoming a feat in itself!
Had my scans today, I am somewhat deflated at the results. The tumours have grown since the last scan, the lymph nodes having undergone a marked change; in that they have grown substantially. OMG! this is so tough, it is becoming harder to remain in a positive frame of mind. The good news is that my liver has recovered a…
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Wife of a cancer survivor
Just checking in to say "HI" I just updated a little of my "about me". Please read and provide feedback. I'm confused and learning. I will know more tomorrow.
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Blood Pressure
I have been on Votrient for 16 months. Hair went white BP went up. Now hair is going back to normal/gray and no longer need BP medication. Are these the sighns that Votrient isn't working anymore. Scan in August.....
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Patient Forum at City of Hope
Hello, Just wanted to share with anyone who might be interested. Our doctor, Dr. Pal at City of Hope, is doing a patient forum to discuss ASCO data from clinical trials and emerging therapies. I don't know who all is in Southern California, but this will likely be a worthy event to attend. Here is the info: Date/Time:…
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Sometimes
sometimes I wonder how so many doctors, trained for years, can be so damned incompetent and irresponsible when dealing with this disease. if we had stayed with my husband's first docs, he would probably be dead. despite pain in the hip that was not relieved and got worst, despite an increase in creatinine, some hyper…
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Update since DX in December
Hello all, Dave was diagnosed with stage IV clear RCC on December 31, 2013. Since then he started Sutent which wasn't working as the cancer progressed into his bones. He was then in and out of the hospital the entire month of May and the beginning of June for infections, severe constipation and most disheartening, extreme…
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Colonoscopy Prep after Partial Nephrectomy
I’m scheduled for a colonoscopy next week and I’m wondering if one type of prep is better for the kidney than another. I had a partial nephrectomy in March and I am really not looking forward to having to take in all those harsh chemicals with the prep. I did Moviprep last time and the PA mentioned there is also Prepopik…
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38yrs found complex mass
Hi I was taken in hospital and found I had a cyst on left kidney so was drained, was in for 11 days antibiotic ect. Went back to see specialist to be told large complex cyst upper pole left kidney plus cyst and stone which they said is a stick not elephant lol but said if need removed will be open surgery due to being on…
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Suggestions, advice?
All, I am hoping to get help and advise. I had a full nephrectomy on December 3, I just went back to have my 6 month CT scan and was found to have several enlarged lymph nodes (5 largest was 4 cm). I am getting very grim news and have been advised for a treatment plan, but every plan does not involve removal of the…
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New cancer diagnosis
Hi All, It's been awhile since I've posted here. My year has had a lot of changes for me. I had my usual CT scan back in early March. I had an "all clear" from my oncologist (I had stage 2, grade 3 cRCC back in 2010, with a 9cm tumor and left kidney removed). Two days after my appointment, he called me to tell me his…
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Eating better with one kidney
My husband is a TROOPER. He has modified his diet in so many spectacular ways. But I'm struggling with the sodium aspect of things. It seems almost impossible to achieve the proper levels for 1 kidney. Does anyone have any tips on this? His creatinine level post surgery was 1.5 and remained the same 7 months after his…
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just a curious question - advice
Went for my 3 month post-op a couple weeks ago. Blood tests came back clean and Dr. said all looked great and that he'd see me again in Sept. for my 6 month saying that I would get a chest x-ray then as well. When I asked about a CT he said he didn't see a need until my 1 year since everything came back clear and that they…
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Had my first follow-up abdominal scan...
And now I'm kind of uncertain of what happens now. I literally just went had my ct done, and when it was done they told me nothing. Not when to schedule the next scan, when to call to get results or when they would call if that's what they are going to do. Never saw the urologist either. Only things they asked me was if I…