Looking for a BLOG companion with the same diagnosis for dialogue

I have been recently diagnosed with endometrial clear cell carcinoma; it was discovered during a recent hysterectomy; the procedure was originally ordered because of enlarged uternine fibroids and the pathology report that followed indicated another major medical problem.  I have been resting at home post surgery, and receiving home care because the incision became infected 3 days after hospitalization.  I have had intravenous antibotics and am slowly recovering from the infection. 

I have had a CAT scan and do not know the results until next week when I meet with the specialist.  I have been looking for someone who has had the same type of diagnosis and would like to discuss treatments, and other emotional issues related to the cancer scare.

I tried to find a CancerComrade at the their website location and although Colleen is making every effort to locate someone for me online, to date she still hasn't found anyone and recommended the Blog here.

I am at home alone most days.  My 84 year old mother, who not in the best of health, lives in the inlaw apartment downstairs.  My husband continues to work while I am on extended sick. Our only child died ten years ago of neuroblastoma, a rare form of childhood cancer.  Other than the three of us, there are very few family members on whom we can rely in our time of need.  The days can be very long and it is hard to do a lot of self talk to stay positive.  I do have faith in God and have used prayer to sustain my strength.  However, since there are no answers yet to date, the unknown is very straining emotionally.

There is almost too much information of the net and at times it is difficult to understand how the diagnosis and treatments apply to you individually.

Needless to say, I need to find someone with whom I share.

Is there anyone that shares or has experienced the same diagnosis?

Hi, Boomer. I am a member of the Yahoo Uterine Cancer group. It's a pretty active group and I think you would find a lot of support there. I was stage 3 endometrial, but not clear cell. Come check us out! Just go to the Yahoo main page, click on groups, search for Uterine Cancer.

I was diagnosed with Stage IIIc Endomentrial cancer, clear cell type, 12/22/2008.  I've just completed 4 of 6 planned chemo treatments.  The chemo is going well, but is starting to make me really fatigued.  But I would be happy to share with you.  Prayer has gotten me this far, and I'm convinced I'll be ok with the chemo and radiation, despite the aggressive, recurring clear cell.  God bless.

Hello.

I am a 2 1/2 yr uternine cancer survivor. If you want to talk about your situation, I am a good listener and can tell you what all is involved.

My cancer was an agressive clear cell also.

I am a little concerned because now I have developed a vaginal dischage (non smelling) and I rarely ever have any discharge. Just wondering what it can be. It has been 2 1/2 yrs since radical hysterectomy, internal radiation and chemo. I have also had many side effects of chemo, some so severe it hospitilized me. Anyone out there have any discharge after so long a time from uterine cancer?

 

On 7/14/2009 ravenbard wrote:

Hello.

I am a 2 1/2 yr uternine cancer survivor. If you want to talk about your situation, I am a good listener and can tell you what all is involved.

I just read your message.  I have just finished 6 rounds of chemo and 23 radiation treatments. The protocol was split - 3 rounds of chemo followed by the radiation and then 3 more rounds of chemo. I started the regime in November 2008 and just finished in June 2009.  There were some delays because of low CBC counts.  Now I am anxiously awaiting the first three month review in August.  I was originally diagnosed as a result of a partial hysterectomy; the pathology report showed cancer cells and I was recommended to an oncologist at Sunnybrook Hospital; needless to say, another operation was recommended to remove the ovaries and examine some of the lymphs. One of my pelvic lymphs was involved, and the left ovary showed signs of invasion.  The stage was difficult to judge because the oncologist had never seen squamous cells invade the uterus.  What was involved in your case?  I am glad to hear survivor stories. It helps keep me on a positive track.

Hope to hear from you soon,

Mary

 

Dear Friend and all that have posted here,

May the Good Lord continue to grant you strength and support and continue to give you victory in Jesus Mighty Name, Amen.

May God touch your dad and bring total healing.

(Luke 1:37)

Blessings,

Bro. Chester

http://www.prayer-for-cancer-patients.com

Because I have Vasculitis and had been treated with Cytoxan some years ago, my menstrual periods had ceased (because of the chemo meds). I went thru a drug induced menopause and my periods had ceased at age 48.

 I began to spot and have very intense pain that would bring me to my knees it hurt so bad and was in the vicinity of my ovaries. It was like a hard hard menstural pain and it lasted for several hrs at a time. Well, I got appt to see a Dr. and she did an exam & said "It doesn't look like cancer" but wanted to do an utrasound.  After looking at the ultrasound she told me that my uterus was very thick and wanted to do a biopsy.  Then came the wait! A couple of weeks later I received a phone call from the Dr. as she was driving somewhere in her car and the first thing she said after I said Hello... was "I am so sorry, it just didn't look like cancer". HA What does cancer look like anyway?

Well, because of my vasculitis, no Dr. here would do the surgery on me so I went to The Cleveland Clinic and had a radical hysterectomy. The waiting for surgery appt was hard because I could just visualize the cancer growing crazy since the surgeon told me I had agressive Clear Cell.

I had the surgery, and was shocked to see how they had cut me for the surgery when I had visualized a bikini type cut. Silly me!  They took out everything they could see plus some extra tissue to be sure they got it all.  A week later I was home and Immediately they had me set up for intense internal radiation and following the radiation I was set to begin chemo. The radiation was not all that bad but the chemo was horrible. Since my veins are so bad from being sick so much, I had to have an internal port put in for the chemo treatments. Because the Dr put the port in the wrong place and it turned on me, it didn't work. Each time they tried the port (and you know how many times you must have blood work) it was impossible to get the needle in the port. They pushed and I cringed because it hurt.  They FINALLY decided the port was not going to work so they took the port out and put in another device in the center of my chest which hung outside my body with tubes & wires which was left dangling and had to be kept bandaged up and dressings changed daily BUT IT DID WORK. lol

After the first chemo treatment, my hair fell out but I didn't get sick, only extreme  extreme weakness/fatigue. I began to have lots of leg and feet pain and they would not give me anything for the pain, only said to drink lots of water. Well that certainly did not help.

The second chemo treatment, I came down with viral esophagitis and was hospitilized. Symptoms of that was the minute I would take either a sip of water or a tiny bite of food, I would get severe pain in location of my sternum. For a week I could not get down a sip of anything  and lost 10 lbs and got so weak I began to faint. Husband took me to the ER @ hospital and they admitted me. After many tests they diagnosed Viral Esophagitis and was put on many different antiobiotics and had to gradually wean back to eating some food, which took a week to do so.

The leg and feet pain was so bad from Chemo induced peripheral neuropathy that the Drs. stopped all chemo saying the risks outweighed the good it would do.

I could go on but I am sure you are bored by now. Thanks for listening!

 

I am not bored in the least.  Sharing experiences helps both of us.  I was originally diagnosed with atrial fibrillation or arrhythmia, irregular heartbeats and rates in February 2008.  The medications that I was prescribed were not effective so the cardiologist switched meds twice during the next two months.  Because I was also prescribed warfarin, a blood thinner, I started to have other symptoms.  Prior to October 2007 my periods had stopped for 9 months.  I was 56 years old then.  By Mar. and Apr. of 2008 was spotting periodically and I thought that my periods had resumed; the blood flows became heavier.  I had had the usual ultrasounds and pap tests done but the pathology never indicated more than uterine fibroids.  However, the blood thinner aggravated the symptoms and the cardiologist recommended that I make an appointment with a gynecologist in the same hospital.  Again nothing more than fibroids were considered problematic.  Because the heart medications were ineffective, an ablation was also recommended.  However, any pre-existing bleeding conditions had to be taken care of. Therefore, I had a partial hysterectomy in August 2008.  The pathology report came back three weeks later and stated that I had uternine cancer, clear and squamous cells, The gynecologist made a referral to Sunnybrook Hospital for further examinations; as it turned out, I had to have bothe ovaries removed and some lymph nodes were taken for examination.  One pelvic lymph showed traces of cancer cells; however, the ovaries showed 80% squamous cells which are very slow growing.  The second surgery was in October.  My first incision had become infected and it took almost 8 weeks to heal; I also had to have at home care, getting intravenous antibotics because my stomach could not tolerate the oral meds. 

 After the second operation, I waited about 4 weeks and I was given 3 chemotherapy sessions, Taxol and Carboplatin; 23 radiation treatments and then 3 more chemotherapy sessions.  I started the protocol in November and it was completed in June.  I am just recovering from the last one.  Each time it took a little longer for my body to recover; the chemo did not cause many side effects initially; however, the radiation gave me diarrhea to the max; then the last 3 rounds of chemo caused my platelets and neutrophils to drop significantly below normal, causing some delays.

I still have to see my cardiologist for the irregular heartbeats; I have an appointment in Oct. 2008 and some time later I will have to have the ablation.  Also my mother became ill this March and after a brief stay in hospital she passed away.  Her funeral was July 5, 2009.

What I am experiencing right now is muscle aches and pains and general fatigue.  Sometimes it seems I have a lot of energy and at other times I feel totally wiped.  From time to time I have a mild headache; however some of the meds I am currently taking might cause them.  I'm not sure though; when one has been diagnosed with cancer, it is difficult to not jump to conclusions about any symptoms. My first three month review is in August.

I would be really interested to know what symptoms you had if any during the last 2 and a half years. I know that all people are different; some women have told me that they sailed through their chemos and radiations.  Unfortunately that was not my case.

 Hope to hear from you soon,

Mary