Cancer: it ain't fun but sure as hell is interesting! (today's onc appt.)

maggie_wilson said:

cancer: it ain't fun

geeze, what a post!!! and what an unbelievable trip your body is taking you on. nodes lighting up and then not, then lighting up again, possible breast cancer in a node that is considered good news rather than uterine mets, surgery and biopsy when it can be fit in between vacations, then disparate opinions re:hormone therapy between doctors, then ........the beat goes on. yet, this last visit could portend good--maybe no cancer in the node at all, and therefore no treatment. will be very interested to learn what your gyn-onc has to say monday about all this. sounds like you're in pretty good spirits, linda, given everything; i hope so. you certainly have your share of absurdities; but maybe so have we all when we look at where we began, and how we got to where we are now. cancer is crazy bad. it's a perfect time to go on a cruise.......

take good care.
sisterhood,
maggie

livealot said:

no fun...and back again
Hi all you amazing women! I've been following your posts off and on for several months and posted only a couple of times. I think I was trying to forget about cancer altogether and reading the board wasn't helping me. I'm 51 with 3 kids, 23/21/18 and a truly incredible husband. I have UPSC- a very similar story to Linda's and about the same time frame.Early menapause and cells found in a routine PAP smear. I filled out most of the "about me" part of the site. in short, diagnosed with uterine cancer 12/08. had lap. radical hysterectomy 12/17/08. Path. did not state UPSC at the time. MD said all areas were clear and it was stage 1A. he failed to see a couple of large tumors that were already present around the colon area. symptoms in April brought me to my internist and CT to find cancer all over my peritoneum. Found wonderful onc. and new gyn./onc. who performed an optimal debulking surg. on 4/29/09 with 2 colon resections, appendectomy, and removal of various pieces of other organs. I had 6 sessions of carboplatin/taxol and had my last session on 9/14/09. I've been doing very well and loving life. really enjoying every minute of it! pretty much stopped working, taking art lessons in oils- something I've always wanted to do, gardening, traveling to see family a lot, etc. On my last 3 mon. check (end of March)at which time I also had my CT scan done, my CA125 had gone up from 6 to 15. CT completely clear. Onc. said no problem but we'll check again in 4 weeks for my peace of mind. it went up to 39. 2 weeks later, 59. this was last wed. Did a PET/CT on Wed. and got results this morning. 4 significant focal points- about 1-3 cm. all in the peritoneum- none in the lungs, lymph nodes, etc. saw gyn./onc. today- those docs were busy today!- he felt surg. was not indicated and chemo is in order again. it's only been 7 mos. since end of treatment. I told him this was a real pisser! he agreed. I'll see the onc. tomorrow and discuss what drugs we need this time. I thought carbo/taxol was the state of the art for this stuff. WHERE DO WE GO FROM HERE? ANY ADVICE ON OTHER DRUGS? Although I have the most amazing support system anyone could ever hope for- family and friends- I feel like I really need to connect with all of you for advice and support. it is obvious you are all such strong and loving women who know what this is about and care for each other. I've come to embrace the fact that this is something I will be living with and know that this is a chronic condition. I am certainly willing to fight the fight, I really do just want to come out the other end of this as long as I can.
Thank you all so much for the posts that are so encouraging to read and really make me smile. And thank you all for the posts that are not so fun but are the reality of our lives. I hope I can help others the way you have helped me. I'm ready to join you all now.
Elizabeth

Kaleena said:

Hey Linda:
I really have to
Hey Linda:

I really have to give it to you. I have been following your posts since I joined and you are truly an inspiration here. What a roller coaster you have been on!

Also, is it me or does it seem that after a major surgery or issue do you notice that the docs always seem to go on vacation. I almost feel that we give them the chance to go on vacation!

Anyway, I hope all goes well for your Monday appointment. I go for my PET Scan Thursday. The first one since my surgery in February.

Sending positive energy your way.

By the way, where are you going for your cruise? We just scheduled a cruise for the end of July to the Carribbean. We will be taking the auto train to Sanford and then getting the ship at Port Canaveral. Our initial vacation was to tour Italy, however, since my oldest son is doing his fall term over there, his Visa would not allow him into the Country until September 2nd so we had to cancel that trip. Ugg! (Almost paid for it too)

I am still adjusting to having a son in college and two sons in high school!

Kathy

jazzy1 said:

I'm with you Linda!
I agree with Kathy that you're simply amazing and love to read your posts. You just dig in and find out what's going on and come back with loads and loads of information. You're like a walking encyclopedia. As you've mentioned before, you were like that in younger years and now it continues on into adulthood.

I'm amazed after reading so many posts on the different possibilities and avenues the cancer can route itself. Quite scary!!! To go back to the breast is a "wow" from my perspective and then to have doc suggest it's a positive....easier to cure!

Did anyone read the Fran Drescher book CANCER SCHMANCER? It's good insight into what can happen during a journey when docs say no it's this or that, but never figure it can be cancer. Been a year since I read it but interesting how she went to a zillion docs (11 to be exact in 2 year journey) and all kept telling her to try this drug or that test and came up with nothing. Think in the end she found a new doc who did diagnose uterine cancer. She had the hysterectomy and found cancer but contained. No treatments. Amazing how no doc found the cancer option, Can you imagine if any of our docs had us in that route and in end found cancer and it was all over our body organs....how would you feel?

In my case, I had some bleeding on and off and just shrugged it up to peri-menopause and lots of running which challenges the monthly cycle. Had appt with OB and told me don't know what is going on but lets get you a vaginal ultrasound NOW. Showed some uterine thickening and then had D&C, showed 2 small fibroid cysts, which ended up being cancer...then to hysterectomy and rest is history. I place my doc on a pedistal as he could have pushed my minor spotting at beginning and put me on drugs or something else. He was pro-active and had me do the rampid of tests to find cancer. Now I was 3C, stage 2 which isn't the earliest but it could be worse.

Linda you're in my thoughts and prayers and glad you're going off on the cruise. You so deserve it and need to get away from the crazies of our disease. You'll come back refreshed and ready to conquer the cancer....you go girl!!

Best to you,
Jan

california_artist said:

Hi, Roberta
Ah, a CAT scan doesn't show if the spots you are watching are more metabolically active then other cells in your body. It seems to me that what you need is a PET/CT combo. The PET will show areas that are active, meaning there's a likelihood that they are cancerous. The CT when used with the PET is a much lower radiation dose CT than that used for a CT stand alone scan, and used more for positioning where the PET shows any activity. in other words, if you have suspicious spots, you really need the PET/CT combo. On a personal level, you will be exposed to much, much less radiation. Radiation is a cause of cancer so the less the better. the pet uses minute amounts of radaition attached to sugar. Cancer just loves sugar, needs it to survive. So that's why you don't eat or exercise prior to the scan, they want to see where there is any activity.

have you ever had a PET/CT. The insurance companies should pay for it if it's been a while since your last or if you've never had one. It's very important to covey that do you have a papillary serous type of uterine cancer. The pet is usually spot on for nodes or areas of 1 cm or greater. 2.5 cms equal an inch so you can see how small that is. Best of luck. It's your life.

Be strong, hope I don't sound like I'm talking down to you, i know you're smart, i just thought you might be overwhelmed.

Claudia

On a personal note, shortly after my sugery, i had a pet/ct. it didn't show any activity but two nodes were a bit large, around 1 cm. my doctor wanted me to come back in a few month for a CT, this was early in my education and i agreed. in six months there was a .5 cm change in the two nodes when looked at after the CT scan. he too wanted to do the wait and see. By this time i had a little more research under my belt and asked, since they were now over the 1 cm mark if i could have a PET/CT combo. he refused to order that and said "we" would have a CT every two months to "keep an eye on things". This just didn't make sense to me since even if they were larger on the next scan, that didn't answere the were they cancerous or not question. i opted to go without an oncologist at that time. i was able to get the PET/CT ordered just through my regular doctor as she saw the reasoning behind it. That scan showed no activity. i continued my dietary and healthy living changes. i had a peT/CT scan again in April a little over a year after the second one. The nodes were still enlarged, but had not grown any. They were the nodes closest to the uterus. Anyway the point is, had i gone with my oncologists recommendation I would have had seven, that's seven CT scans. Each of those gives you the radiation equivailant of 15 years exposure (I will have to recheck that, but it's really, really high).

Songflower said:

For Livalot (Elizabeth)
Elizabeth I relapsed about the same time you did. Finished chemo mid July 09 and had brachytherapy and some time in Feb CA 125 went up and I have early peritoneal carcinamatosis. That means it spread to the peritoneum.

I am on doxil and avastin. With this chemo the CA 125 does not go down right away. Mine went back to normal after second one so I am having a good response. This chemo is much easier for me and most women don't lose their hair.

I am also being considered for HIPEC which is a surgery in which they get all the cancer off the peritoneum, scrape and skin the peritoneum; instill heated chemo and then six more months of chemo. I guess it's quite a surgery but some people have been put into permenant remissions with it.

We are learning to live with cancer. I am much calmer and at peace this time. Taking one day at a time. Although, like us all I sometimes cry. I see a therapist and she advised me it's good to cry two times a day, just for 15 minutes!

I am happy you joined the board.

Ro10 said:

My onocologist also said the insurance does not approve PET
I asked about a PET scan and my gyn/onocologist said insurance does not approve PET scans for UPSC. I too have Blue Cross. He said the CAT scan would give the information needed at this time. He said he does not agree with the insurance companies decisions. I know many have had CT/PET. I am not sure why theirs were approved. My three suspicious areas have been unchanged. If they grow bigger than 1 cm, maybe things will change for a PET.

Maggie I hope you CAT scan goes well for you. In peace and caring.