FOLLOW UP

[melenzbee83]

Hi Ladies,
I guess I am going through hell right now after having major debulking surgery at such a young age and am left feeling angry and helpless due to the lack of care from my specialists and doctors. I am just about to begin legal action against the doctors who have not done their job properly. My main concern is i am too going to seek a second opinion on from another oncologist as when speaking to my current one after cycle 5 on Tuesday (my mum nicknames him "GOD" as he seems to think he is) he has only recommended ca125's to be done as my follow up treatment ?(which sorry but you can shove that where the sun dont shine, seeing it is not 100% accurate) so i also asked for scans which he was not convinced i needed. He also wouldnt really comment on "my" particular situation, my health, my age, my prognosis- im sick of hearing- "we just dont know what will happen!"

How often, and what testing do women on here have to make sure a reoccurence does not happen? For my own piece of mind and to be able to live life i at least wanted a scan after my 6th cycle (CT or PET) plus check ups every 3 months to begin with? I am so hoping that my new oncologist treats me like i actually matter and that i finally get some answers. Wouldnt it be nice to feel like i have an oncologist that actually cares whether i live or die!

[justworried2009]

Hi everyone

I am 38 years old.  Started bleeding while having sex. So went to the doctor.  had a pap smear done. she said that i have cervical polyps.  sent me to get an ultra-sound done.  ultra sound revealed that i have 3.5 cm cyst in my left ovary.  she then referred me to the gynachologist but not able to get an appointment for another month in a half.  I starting to worry because i have had numerous health problems for the last five years.  can anyone recommend a doctor that specialises in ovarian cancer in brisbane?  i live in bundaberg so it's no problem travelling. thanks so much.

[sandiestar]

Hey Mel,
sounds like you have been having a tough time... Just wanted to let you know my thoughts are with you!!!!
you've been through so much already... good luck with the court case.
sandie
x

[melenzbee83]

Hi Ladies,
Thanks heaps for all your info about your own follow up, treatment. I will speak to my oncologist next tuesday when i have my last cycle of chemo but i am also seeing another oncologist for a second opinion and he seems to know more about ovarian. Not only is he head of oncology at a large hospital in brisbane but specialises in ovarian in bowel. Also the recommendation came from other patients rather than another doctor and he is meant to have a godd bedside manner.

I am still pursuing the court case, i actually have a really good case and have a number of law firms wanting to take it on. Everyone is different but i need to do this so it doesnt happen to anyone else and im sorry but there is clear negligence on 3 doctors in particular, you dont go from borderline to stage 4 overnight, they ignored a lump and did not follow correct procedures- they should pay as far as im concerned im only 26 and was only 22 when this stupid battle began! GRRRRRR! VENTING! lol.

[Conners]

You are right. I will start with a new oncologist this next month. I saw a sub. Dr. while mine was on vacation and she actually asked how I was doing and if I was doing anything fun and if I had depression. Most of what I have learned about OVCA has come from these forums. It was so nice to have a new outlook and some Dr. that actually cared. Good luck! Conners

[cath81]

i understand and can relate to your concerns. my mum has ovca and sometimes i feel too that the doctors don't seem to care much about her follow-up treatment after chemo.

my mum's doctor asked for a CT after her chemo. and after that, i had request for a scan once a year. her doctors, both the surgeon and the oncologist, never offered to scan her again unless i asked them about it. and i always made a point to.

i think the management of a patient is a two way thing. the doc should listen to the patient  as well. and a good doctor should consider the patient's needs before he decides how he wants to manage the case, e.g how aggressive should the treatment be and what type of follow up is required. my feeling is that you've just got to communicate with your doctor better and tell him your concerns again, and that you want to be monitored closely. if he is persistently rude or dismissive, then you might want to consider another doctor. a check up after every 3 months is very reasonable. he should not have any reason to say no.

having said that, as you know, there are not many tests for ovarian cancer. doctors are reliant on the CA125 and physical symptoms, e.g. problems with bowel movement, abdomen pain that might be suggestive of recurrence. even though the CA125 said to be not that accurate, i suppose if the patient appears well, is eating well, with no physical symptoms and a normal CA125, then it's likely that she is still cancer free. the most important thing is for you to watch your physical symptoms as well and let your doc know when something unusual crops up.

regarding the legal action... if you don't mind me saying this... i'm thinking don't bother. unless there is a clear case of medical negligence, e.g. he prescribed the wrong medicine, screwed up the op, you prob won't win the lawsuit... why waste time, energy and money? better for you to focus on recovering after the chemo treatment. and you always have the option of going to another doc.

[OzBron]

I had my chemo in the UK, and just had CA125's thoughout treatment. I moved to the US straight after the last chemo and had 3monthly CA125's. I had a CT scan 9mths out from chemo last June which was all clear and the plan was to just do 3mth pelvic/rectal exam (pleasant) and CA125's and CT scan if I had any symptoms or if my CA125 went up. I had a lot of pain from adhesions late last year so had a CT scan in December so essentially after 6mths. It was all clear. The adhesions then tore/popped etc (not fun) and the pain went away. Now I am pregnant so I am having absolutely no followup which makes me nervous as all hell. Once I deliver at the beginning of November I am to wait 6 weeks then go for a checkup and will have CT then. However I have an option of a 2nd look surgery during my c-section and if I go with that then assuming it is clear I will skip the CTscan.
I don't want to keep irradiating myself if not necessary. Also I have a thyroid problem and can't use iodine contrast so would rather limit the scans to when I need them.
For me the CA125 has been a very good marker so I am happy to stick with that and the exams.

[coogeegirl]

I have been having a blood test to measure my CA 125 every three months and a CT scan every 6 months, if I get the OK at my next check up they will be releasing me onto 6 monthly checkups, which means a blood test every 6 months and a CT scan once a year.

Jenny

[JC145]

When not on treatment, I had CA125's every 3 months and PET/CT every 3 to 4 months.

[tworoses]

Good follow up is CA 125 and CT every 3 months, for 2 years, then on to every 4 to 6 months. The CA 125 alone does not tell the entire story as you well know. Most Docs do not commit to a time frame by the way for your prognosis, which really I think is being truthful, as they do not know!

[bmcd]

Ashley received CA-125 and CT scans and even sometimes ultrasound every three months for 2 years after her chemo treatment.  She will receive CA-125 and CT scans every six months for the next 2 years.  Then we will see depending on results.  She was dx in Dec. 06 and September is her first six month scan.  If her doctors had offered just CA-125 I too would have found that unacceptable.

Take Care and God Bless,
Bob

[westajul]

I would  suggest you have a ca-125, CEA and a CT or PET scan done every three months during and after you finish chemo. After you finished your chemo the every three month regime should contiue for at least one year...then for the second year every 4 to 6 months. That is what my local oncologist and my gyn/onc. at MD Anderson recommended. I know my insurance company balks at the PEt scan done every 6 months...but with a little bit of pressure they have agreed so far...but that could change. I can't remember if your surgery got all the cancer but I can't believe they don't want to do any sort of scan. My ca-125 has always been in the normal range...so If I relied on that the recurrence in my liver would be growing instead of being gone.

[Pat4444]

THat sounds awful.

My onc only did Ca 125 at diagnosis and then after I finished the major chemo,,he said it wouldn't change his treatment. Then he did one three months after initial treatment and will do one every three months. He scanned me at end of initial treatment but I don't know what he will do after we finish maintenance.

A good doc will listen to you and answer questions and won't be arbitrary and rude. Get another.

[marie3B]

I agree that the CA125s are not enough.  I hope your second opinion doc gives you more consideration.  I feel your frustration and I share it. They are not sure what to do with us.  All I read is that more studies need to be done on the lower grade cancers.  Well, they have been writing this for years, so let's do more studies and find treatments and help for the more rare cancers.  I hope you get results in court as well as with the new doc.  Marie