On 04/09/2008 my 42yrs sister suffering from Hashimoto's disease and Systemic Lupus Eryth. for the last 20 yrs, Caudina Equina Syndrome since 5 yrs (already operated 4 times for herniated discs) presented with high fever lasting for 4 days afraid of lupus recurrence. Following blood and urine tests an ultrasound showed a morphoma inside the left kidney which was not blooded. MRI confirmed the findings and a total nephrectomy was performed on 06/09/2008 (on the 7th day since first day of fever). Histological report: Renal cell carcinoma, sarcomatoid type, grade 3-4 (Fuhrman), T3A (AJCC).
18-FDG PETscan on 25.09.2008 (19 days after nephrectomy) showed
2 foci of 1,5 cm and 1,1 cm respectively with increased FDG uptake at the posterior part of the upper lobe of the right lung (intensely hypermetabolic pulmonary nodules compatible with malignant disease)
and 5 smaller nodules in the middle lobe and the apical superior lobe of the right lung & in the lingula and the upper part of the superior lobe of the left lung, which do not present FDG uptake. These nodules though not presenting hypermetabolic elements cannot been excluded from participating in the disease because of their small size (partial volume effect).
I should also mention that the patient is allergic to cephalosporines, quinolones and aspirin and that she is taking Thyrormone 0,1 mg daily and Prezolon 5 mg daily) (father died 8 yrs ago from transitional cell carcinoma).
On Sep 30.2008, she took her first Sutent pill and she'll continue with 50mg.
Her med.oncologist said that things are tough, she might or might not stand it, she might or might not have side effects, the nodules might or might not shrink or even multiplicate, she might or might not have further mets, she might or might not need resection of her pulmonary nodules, her Lupus might have relapses ......and many other ‘’’’OPTIMISTIC THINGS’’’’ like these.
Soooooo, lacking a better more optimistic option she started taking it yesterday.
That's her story in brief. What I am looking is not really somebody with this ''whole package'', I know it's a rare combination. What I really need is to speak with someone with RCC, sarcomatoid type Stage 4 with multiple metastases in both lungs which were present since the first day of diagnosis of the primary tumor in the kidney.
A word written by a patient would be the best. A word written by a caregiver would more than welcome. What I read about the prognosis of RCC-sarcomatoid type is really more than ....bitter. However, I need to read something by a patient or a caregiver and not only research conclusions and statistics.
Yours again
Katerina from Greece