Hi Everyone, I am so scared now and I don't know what I am talking about. Today I did a Pet scan, the result has not been finalized, but the nurse called me, there's a big mass in my pelvic area, and lots small ones in the same area and liver....but you know what, 3 months ago, the ct scan didn't show anything, and my ca125 this month is 3. Is there anyone could tell me what's going on? No sign, and suddenly it's so worse?
I am off chemo a year. 6 month ago I asked for a pet, but my doctor said it's not easy to compare apple with orange, so we do ct scan.
What could I do? My doctor is on vacation this week. Anyone has any clue, idea for treatment is appreciated. I have a 2 years old, I woulen't give up. But I do need some direction.
Thanks very much,
Maysea
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Scared! Big masses----
- By Maysea
- Posted December 29, 2008 at 7:30 pm · 35 replies
- In Recurrence
- Shared with the public
Explore topics in this discussion:
35 replies
- Oldest first
- Newest first
- By Maysea
- Posted January 9, 2009 at 11:23 am
- Report post
Hi Ca05, thanks for your suggestion. I would like to let you know that the Pet scan facility doctor mixed up my films and gave us a wrong report, not my doctor's fault. And my doctor order another ct scan next week for me to double check. And I would say Ca05, you are right, I went to Johns Hopkins to see a gyn oncologist as new patient, he asked the Pet facility doctor for my images, then they realized something wrong, otherwise next week I am on chemo.
- By melf
- Posted January 9, 2009 at 11:18 am
- Report post
SHAME on that nurse! It is not her place to divulge such news- My onc calls me personally with any news. He has called late in the evenings and on the weekends, but he has always called and spoken to me personally. I would certainly let your doctor know what his nurse giving the results caused you and your family.
Its easy to say dont worry, but we understand what you are going through. Only your doctor can put the results in proper perspective for you in regard to your disease process. I agree with Momanderson, maybe there is another doc in the practice that can help while waiting for your doc to complete his vacation?
Keep us posted.
Melissa
- By ca05
- Posted January 9, 2009 at 11:07 am
- Report post
Do you like your doctor? Have you considered looking at a second opinion? Are you near a large city hospital with a good reputation for cancer treatment?
Just wondering.
- By Maysea
- Posted January 9, 2009 at 9:22 am
- Report post
My doctor told me they mixed up my old films. I have done 4 pet scans there. It's a nightmare. My parents are heading here from other country, my husband and I cried so much for our little 2 years old son. And I am scheduled chemo next week, just think about it, no tumor, I will be on chemo!!!
- By SouthernBelle
- Posted January 8, 2009 at 9:59 pm
- Report post
How in the heck did that happen? Did they mix your study up with a different patient? That seems like a medical nightmare but I am glad that your news is good.
- By Maysea
- Posted January 8, 2009 at 7:44 pm
- Report post
Hi everyone, something unusual happen to me. Even yesterday my doctor and I talked about Chemo options.This afternoon my doctor called me and told me the Pet scan result we got isn't the right one, my new pet scan is clear! Woowoooo! Such a good news! My doctor said in order to double check, next week I will do another cat scan.
Thanks again for everyone's support. I never thought this kind of things could happen!
- By Maysea
- Posted January 7, 2009 at 7:58 pm
- Report post
Today I saw my medical oncologist, he said he will use chemo to control the cancer spreading first. Surgery may be an option later on, see how much the tumor will shrink. He want me do a biopsy to test tumor platium resistance first. I just curious, anyone have done that?
Appreciate your response.
- By Dodie1
- Posted January 6, 2009 at 2:41 pm
- Report post
I'm speechless.
What was he thinking?
Please keep us updated.
Take care & God Bless
- By Fireball
- Posted January 5, 2009 at 10:06 pm
- Report post
Oh hon I'm so sorry. Please keep us updated.
- By Maysea
- Posted January 5, 2009 at 9:57 pm
- Report post
I would like to update everyone after I went to Johns Hopkins and saw a gyn oncologist there. Guess what he said? I shouldn't be diagnosed with OC, it should be something else. I thought he is kidding, but he is very serious. He let me wait and see him next monday. Also he said surgery may not be the option, because he couldn't get rid of all the cancers there(lymph notes and livers). He will review my medical records and pet cd. I told him my cancer grow very fast, he said usually measure cancer grows in weeks and months not days.
Wednesday I have two other appointment, another gyn oncologist and a normal medical oncologist.
Brothers and sisters, I feel sometimes our doctors are tired of handling this nasty disease, then what could we do?!
Any input is appreciated.
- By Maysea
- Posted January 1, 2009 at 8:06 am
- Report post
Thanks so much to all of you. Next week I will see my gyn oncologist and see what her/his opinion, chemo first or surgery first. But I prefer surgery first, because this is a recurrence, I don't know chemo works or not, and there's a big mass there, small ones around area. It also depends on how soon chemo could follow.
Couldn't sleep, I think I am in a can't wait situation. But everything need wait, wait, wait....
- By Dodie1
- Posted December 31, 2008 at 9:00 pm
- Report post
Please don't panic until you can talk with your doctor. I wish you the best.
Take care & God Bless
- By Emily1
- Posted December 31, 2008 at 10:50 am
- Report post
The procedure Viki is talking about is, I believe,
intraperitoneal hyperthermic chemotherapy (IPHC).
Here is a link to see a video of this operation. Very interesting because the surgeon is explaining everything throughout. Warning: it is an operation, so maybe not for the squeamish. You will need Real Player to view (free).
http://www.or-live.com/WFUBMC/1478/
- By FavoriteAunt
- Posted December 31, 2008 at 9:34 am
- Report post
You asked about Johns Hopkins - yes, that is an excellent facility if it is not too far for you.
- By Maysea
- Posted December 31, 2008 at 9:10 am
- Report post
Thanks for your input Kmarienap and congratulation for you 5 year point, and hope it never come back.
- By kmarienap
- Posted December 31, 2008 at 7:36 am
- Report post
I was going every 3 months for check-ups for almost the last 4 yrs. I rotated between my surgeon and oncologist. They just recently cut me down to 2x a year. I get a yearly cat scan and if I even think something is wrong, they schedule tests immediately. I still have a CA125 done I think because enen though my numbers are so low that even a slight fluctuation might mean something. I never went above 18. I have read that sometimes in a situation like mine, a CA125 might show something in a recurrence. I live in Sarasota fl. and was treated at H.G. Moffit. in Tampa. My surgeon is DR. James Fiorica and he now heads the gyn/onc unit at Sarasota Memorial Hospital. I was told after the fact how fortunate I was to even get into Moffit within 3 days and especially get him for a dr. as it usually can take weeks or months to get in! This man is remarkable beyond words and saved my life. I have heard that the Cancer Treatment Ctrs. of America are excellent, which there is one in Philadelphia but I have also heard that they are very expensive unless you have the right ins. co. I was put on medicaid immediately and can't believe how everything worked out. I am almost at the 5 yr. point and although this is supposed to mean that I beat the statistics of the 5 yr. survival, I also know that it could mean that I am closer to a recurrence. It is really strange how this all works. I still believe that having a positive attitude was my key to survival along with my grand children. The day when I was first in the ER A friend od mine and I were already discussing hospice as the ob/gyn that was on call looked white as a ghost and very relieved that I was not going to have him do the surgery that night as he really believed it was stage 4.
There were some very humorous moments through this and I just went with whatever happens, happens. I even went through the chemo with no problem except halfway through I felt a little achy for about a day after each treatment. I came out with neurotherapy but it is manageable. I think I just gave you more info than you asked for and I apologize for that. I really should write this story on a journal entry as I said there were some very homorous moments especially with my children!
- By Maysea
- Posted December 30, 2008 at 10:17 pm
- Report post
Thanks to all of you. I really appreciate all of your input. I told my husband when I face this disease what worrys me most is I couldn't lose it, my little son is too young. Traditional treatment maybe is not enough, Viki's idea is what I am thinking now. Problem is where to get a skillful surgeon could do that. How much is the risk factor? I only know one doctor may could do that, Dr. Esquivel. Is there anybody familiar with him?
Any input is greatly appreciated.
- By acosta1027
- Posted December 30, 2008 at 7:47 pm
- Report post
I understand your concerns. I had to wait for my MRI results after "something" showed up on my CT scan. My doctor was discussing it with other oncologists and that is all the nurse would tell me. They kept putting me off and it was making me a nervous wreck. My oncologist finally called me about a week later (last week) and said that the radiologist that read the MRI found several masses on my liver and kidneys and felt there was enough evidence to indicate cancer BUT my oncologists and his colleagues aren't convinced and they decided to wait 2 months and redo the tests. My CA 125 has been rising but is at 15 which indicates it is still normal. I know it's hard but try to stay calm and optomistic - if we do have to do treatment again, we can do it! I'm a year out of chemo, too, and was hoping for a permanent remission!
JoAnne
- By Maysea
- Posted December 30, 2008 at 2:57 pm
- Report post
Thanks Zircons and Emily. UVA is 2 more hours away, PA maybe 3 to 4 hours away. How could I handle my little kid?I am just looking for some other options. But the insurance nurse just called me, and said if I go outside of state for surgery or treatment, I may need pay more (extra portion), she recommend me to get local treatment.
I just thought of Johns Hopkins, still other state, 60 miles away, because my case is special, ca125 is negative for me to watch. Anyone have any idea ?
- By viki
- Posted December 30, 2008 at 2:39 pm
- Report post
Being off-chemo for a year you may have a good chance with a second debulking operation + followed by platinum based chemo. Try to find out if anybody around you does "radical cytoreduction" operation (digging out all cancer tissue which can be identified visually - or is likely to carry cancer and is not necessary for life) and then HIPEC - immediately after the operation hot chemotherapy is placed in the peritoneal cavity for 1 and a half hour. Those two things are life-prolonging but should be done by really skillful surgeons.
PET showing more than CT: usual. I also had this peculiar argument with my onc who insisted on doing CT instead of PET. Maybe HMOs instruct them - PET is much more expensive.
Add to the discussion