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 LisaHarris
- Posted December 29, 2008 at 8:53 pm
- Report post
I totally understand your fear. I can't believe the nurse called you giving you the information she did. Especially when the tests were not finalized. It is your doctor's place to discuss results with you. I'll be praying for you and peace of mind. Hang in there!
Lisa
- By Vic
- Posted December 29, 2008 at 9:17 pm
- Report post
I know it's not easy to stay calm, but the mass might be scar tissue from surgery. I would wait to speak with your doctor.
Good luck,
Vickie
- By momanderson920
- Posted December 29, 2008 at 9:46 pm
- Report post
Do not freak out yet. I got a PET result and called asking for results which the nurse gave me. Her interpretation of the report was totally different (indicating cancer activity due to enlarged something or other) than the oncologist's which turned out to be no active cancer. I know it is hard to stay calm. Is there another doctor in the group who you could ask to review it? I know two weeks is a long time to be worried. There can be masses that are nonmalignant or scar tissue as one of the other girls mentioned. It seems odd to have such a low CA125 and some huge cancer activity. I will keep you in my prayers. Try not to panic till you can talk to a doctor.
- By Maysea
- Posted December 29, 2008 at 9:47 pm
- Report post
Thanks so much Lisa and Vickie. I would like to let you know that my doctor is on vacation this week and my husband called the office for results, so that's why the nurse respond, and I thought my situation is serious. The biggest mass is 7.5cm * 5.5cm. Is there anyone there that could have such big scar tissue?
- By Maysea
- Posted December 29, 2008 at 9:53 pm
- Report post
Is it possible that this is different kind of cancer? Maybe it is no longer overian cancer, are there such cases where a person can have 2 forms of cancer at once?
I am asking this because the PET doctor asked me when I was diagnoised with overian cancer, because he wasn't sure whether the mass is overian cancer.
- By Maysea
- Posted December 29, 2008 at 10:00 pm
- Report post
Thanks to Anderson too for your good advice. I will contact the office try to let another doctor review my results.
- By FavoriteAunt
- Posted December 30, 2008 at 12:19 am
- Report post
I cannot believe a nurse would give you these test results. I know my doctor would never allow that. She is not an oncologist, so you must wait for your doctor and have him explain the test results.
I can understand your fears, but do not panic and assume things since you do not know for sure. None of us are doctors, so you must speak to him.
Please try to relax and get an early appointment with your doctor when he returns. Meanwhile, I will wish you a happy and healthy new year.
- By momanderson920
- Posted December 30, 2008 at 2:39 am
- Report post
When they do a PET, many also do an underlying CT scan so they can tell what the structures are so the masses could be noncancerous structures on the CT and not cancer activity. I would not freak out on what a nurse tells you. If I had gone by the nurse's report, I would have thought I still had cancer and I did not. When the oncologist read the report, etc., the cancer was truly in remission. I know it is hard not to panic. I would call and see if another doctor is available and explain your situation and anxiety. Two weeks is a long time to wait for an answer...if it is a group, the doctor probably has a stand in while he/she is gone that could review it.
- By kmarienap
- Posted December 30, 2008 at 6:00 am
- Report post
As far as the CA125 goes, not everyone responds to this test. Like myself, mine did not produce a protein that is needed for thid test to be accurate. My CA125 has never been higher than 14 and my mass was 32cm (15 lb) and just a mess! I am Stage3c with no recurrences since original which was 2004. Dont panic and please talk to a doctor.
- By Shelter
- Posted December 30, 2008 at 7:52 am
- Report post
I am agreeing with all the otehr gals....
a nurse chould not have given you a report
and wait till a qualified doctor tells you whats going on
breathe............... take your selkf to a place whre you can be calm... and relax....
will be thinking of you
- By Maysea
- Posted December 30, 2008 at 8:43 am
- Report post
Thanks to all of you. Your post let me calm down a little bit, but still.... I will go to the doctor's office and let someone explain to me about the results. I have a question for Kmarienap, if ca125 is not a good sign, how you watch your status? where you get your treatment, I think you are so lucky. I was thinking IF it is recurrence, with this big mass, where is the best place to get treatment. I live in virginia. PA cancer center is the nearest cancer center, but I don't know how the service there, and how the expenses for personal.Any idea and suggestion?
Thanks again to all of you.
- By hinsopa
- Posted December 30, 2008 at 9:10 am
- Report post
I'm so sorry you are going thru this. I have a bit of a different opinion. I think you have every right to have the results of your pet scan and vacations should not delay your getting them since you requested them.
As for your ca125 question, some docs only go on the results of cts and pet scans. Many are of the opinion that "you can't treat what you can't see". Research doesn't show that treating it before you see it lengthens survival time.
I think you are so smart to be researching major cancer centers.
- By Maysea
- Posted December 30, 2008 at 10:55 am
- Report post
I would like to let everyone know that my doctor let me contct my surgeon first and see her opinion.
- By zircons
- Posted December 30, 2008 at 11:13 am
- Report post
Have no idea where Herndon is? My gyn/onc surgeon just moved to the Univ of VA Medical Center in Charlottesville. She is great!! Linda Duska.
- By Emily1
- Posted December 30, 2008 at 11:37 am
- Report post
Maysea, get a copy of the written PET report that the nurse was reading from. On my report which showed a recurrence, it described the area as "likely to respresent metastatic activity". If you get the report ahead of time, you can study it and have questions ready for the doctor when you see him. I also think it was very unprofessional of the nurse to give you any results of the test, especially when she isn't qualified to explain the results, or offer guidance.
When you say you live near PA cancer center, is that Pennsylvania? If so, I have read about the Univ. of Penn. as having a very active ovarian cancer program, with a noted gyn-onc, Dr. Geroge Coukos practicing cutting edge procedures. You might want to check out this.
http://pennhealth.com/Wagform/MainPage.aspx?config=provider&P=PP&ID=9139
Please keep us posted,
Emily
- 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.
- 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 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 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 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!
Add to the discussion