Okay I went in for chemo #5 and told the nurse about the sore spot under my right lung. They are going to schedule a pet scan and a cat scan soon to see what it is. Ialso now have anemia. Plus she told me my CA 125 marker test went up.
I have stage 4 endo cancer and it is the serous papillary kind. I figured when I did all the chemo, then had all the radiatiuon, that I would get better. I also thought if I had a total hysterectomy, that takes out the cancer. Right? But the doctor who did surgery said there were still cancer cells inside. Isn't chemo supposed to zap them?
What does it mean to be a stage 4? Most everyone onnhere has a lower stage than me. I am thin andm in good health and great shape. I haven;t even felt like running muchin the past two weeks. And that was my favorite thing. What gives????
I recommend that you write up a list of questions - the simpler the better - for your next gynecologic/oncologist appointment. You should be able to get a clear understanding of your cancer, and current or planned treatments from them. In addition, you should probably get a copy of your pathology reports from the surgery. These will explain where the cancer was found - the sizes - whether margins were clear or not, and will give you a better idea of the extent and range of your particular cancer.
If you don't get satisfactory answers from your gyne/onc - it is time to look for another one. I dropped my first one. I have been very happy with the two I am currently seeing.
There is a lot of good information on the web - but be careful!! I scared myself to death reading stuff on the web about my cancer. I think you will get better specific information regarding YOUR situation, from your gyne/onc.
Please keep us updated! Breathe deep, and don't overdo it. Chemo kills healthy cells too and radiation can sap your energy as well. Don't push yourself into running - your body will let you know when it feels like resuming your pre-surgery/treatment activities.
At every appointment with my gyn/onc I came with a list of questions. I kept a little note pad in the kitchen and jotted down every question as I thought of it. When it came time for my appointment, I took my little notebook. My doctor got so used to it that he would do my exam, tell me what he thought, and then sit down for my list of questions.
I am not surprised that you don't feel like running while on chemo. Chemo can be exhausting and the side effects are cumulative. The longer we are on chemo, the more tired we become. Hang in there, your love of exercise will return.
Did your doctor tell you how much your CA125 went up? what is the current number? Some fluctuation in the CA125 is not unusual. They often retake the test, to make sure that the increase is consistent and not just a fluke. Flukes are not uncommon with that test.
I think I sent you a PM, sometime back, recommending my gyn/onc for a second opinion since he is in your/our area. If you need it again, I'd be more than happy to send it to you. He's a great doctor, a long time head of the only gyn/oncology practice in NOVA. He will answer all your questions about your cancer and your treatment.
I know how scary all of this is, but knowledge is power. The more you can learn about your cancer, the better prepared you will be to take part in your treatment. So I agree with the others, get your records, and ask questions. Arm yourself so that you can help your doctor.
Not to be criticizing other hystersisters in any way, but when I was diagnosed with cancer, my pharmacist sister knew that I would be researching it and she told me to be very careful when on the web. She explained that there are, as other hystersisters have observed, a lot of web sites that either scare you or are not objective. She recommended the American Cancer Society as a reliable website and I have found a lot of good info there. When it comes to woman-to-woman help, though, Hystersisters can't be beat!
Cheryl, please keep after your doctor until you get the answers you are seeking. I know it is tough when we may not be feeling 100% but we have to be our own best advocates regarding our health care. And i could not agree more with Janie that knowledge is power.
First of all, I am not one to ask a lot of questions. Nor do I look up my kind of cancer on the net. it's too scary. I even hate coming here because hardly any one has what I have. If they do, no one has stage 4. Yes, he said stage four. He told me right after surgery. I was speechless. I asked no questions. I just said, "Well get me better."
Honestly I had no symptoms prior to this diagnosis. I ran every day, worked out with a trainer, weighed 130 lbs. worked in a gym after a 35 year career teaching middle school. In june, I trained for my first ever 10k race and had a little spotting. Not even daily and not even enough to wear a mini pad. When the race was over ( I came in 1st for my age group of 61) the spotting continued. I immediately went to my gyn. The pap smear was negative. I had a sonogram ( inside and outside) all appeared normal and I saw that radiology report. Then my gyn said "Let's do an endometrial biopsy." I said Where in the hospital I hope since I hate pain.' sHE SIAD WE DO THEM IN THE OFFICE. I said You are nuts! They hurt too much." So she agredd to do a D and C in the hospital with my under general anesthesia. Well we were all astounded to get the path report back. Then they sent it to some guru at Yale. Same diagnosis only involving lymph nodes and spread.
Well ladies I found one of the best onc/gyns here in the DC area. He is Paul Mac Koul and his practice is called Womens Surgery Center. They have a web site. I would love to be able to tell you I was dreaming this But it is already stage 4. I was released from Reston Hospital 2 days after a complete hysterectomy because I was in no pain and was up walking on day one.
Soon after, I got a port put in and started chemo. I just finished the fifth one with little bad effects except tiredness. After my last one, then I begin radiation and after that, I hope to be all better.
All I can do is trust my doctors. Why should I look up cancer stuff? That's his job to find out what will make me well. If I am gonna spend time on a puter I would rather read Dlisted.com or Margaritaville, stuff that's fun.
I know lots of people like doing research and learning about new stuff, but not me. All I want is my life back the way it was. I want to run with the wind in my face, lie on a beautiful beach and eat steamed shrimps, kayak on a sunny day and stop, relax, and watch wildlife(even snakes) I don't want to arrange my life around doctor appointments or tests. Well to be truthful, I wish this had never happened but it did.
Thanks for your feedback. Jane, I would love to get to know you better. We live close.