It's been awhile...

Hello everyone, it's been awhile so I figured I would check in. It's actually been about 2.5 months give or take! I made a post back in May freaking out about the possibility of cancer. My doctor reffered me to a gyn and I wasn't able to get in until June 9th. On June 9th the doctor I visited did not do any furture testing at all. She said that based on syptoms it sounded like I polycystic ovarian syndrome. I was gave birth control. I go back to that doctor on the 19th at 9:45 am. She said at this time she will be doing a new ultrasound and ct scan with contrast. (same as the did in the ER) While I am waiting as patiently as possible I am losing my mind and having new issues. I still feel pain on and off, I have only had 1 period in the last 3 months, mild pain during intocourse, I still feel sick a lot of the time, I get constant headaches, lack of appitite, lack of energy and more recently bright red blood in my stools. (sorry TMI)

Yesterday I went to my regular doctor she was very angry that they haven't already done new ultrasounds,ct scans or blood work but was happy to hear they will be doing that on the 19th. My reg doctor said that she was going to reffer me to a geneticist for testing to see if I carry the cancer gene. I guess they will be testing for BRCA1 and BRCA2. I am still unsure what it will mean if the test comes back positive.

My Moms doctor told her that she carries that gene. This sept is her 5 yr mark from where she was battling breast cancer. She also recenlty had a mini stoke that put a blood clot at the front of her head. My mom was 46 when she was diagnosed with breast cancer. Also, my grandmother had breast cancer and ovarian cancer. I am not sure what age she was when she was diagnosed. I do know she was only in her mid 60's when she passed away 4 years ago.

I still feel like I have no answers. The one doctor said polycystic ovarian syndrome but that was without actually looking at any documentation. ( she didn't look at the ct scan results or the ultrasound results the hospital did) she just based her diagnoses on what information I was giving her.

However, before I was in total panic mode... Now I am more relaxed and just ready for whatever. I just hope I get a real diagnoses on the 19th when I go back and I am hoping it's nothing as bad as I feel it's going to be. My gut feeling says it's bad!

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Seek opinion from a gyne/onc.

    Hi April:

    Sorry you are not feeling well.   It is so annoying when you go to a physician with symptoms and they just shrug it off.    Have you ever thought about going somewhere else for a second opinion? Based on what you are telliing me you generally don't feel well.  I am with your regular doctor about being angry with your gyne.    With your family history of cancer, I would probably seek a second opinion with a gynecologist/oncologist.   They will take all of your symptoms into consideration and would probably do testing earlier too.   I would bypass your gynecologist altogether.   If she tests you and finds something, she will only refer you to a gyne/onc anyway.  Why torture yourself in the meantime when you aren't feeling well.   

    I went for almost a year trying to find out what was wrong with me and I was told I was depressed to other things.  In the end, my gyne did a hysterectomy (not because of cancer) but he indicated to me that I had severe endometriosis.    It wasn't until after the hysterectomy that they found cancer.      I am only telling you this because I kept going back to the doctor because I wasn't feeling right (pain with intercourse, bowel issues, generally ill, bad stomach pains, etc.).   But I knew these symptoms where different from before and not right.  Sure, I was given narcotics for pain, etc. but I knew something was wrong.   Also, I am told my case was "complicated" whatever that means.  

    Take control of your care.  You are only one of millions of patients and everyone is different.   It is ok to seek another opinion.  

    I am glad to see that you are thinking this out and not totally panicing.   When you take control, you will have a more relax feeling.   

    My best to you.

    Kathy

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    Kaleena said:

    Seek opinion from a gyne/onc.

    Hi April:

    Sorry you are not feeling well.   It is so annoying when you go to a physician with symptoms and they just shrug it off.    Have you ever thought about going somewhere else for a second opinion? Based on what you are telliing me you generally don't feel well.  I am with your regular doctor about being angry with your gyne.    With your family history of cancer, I would probably seek a second opinion with a gynecologist/oncologist.   They will take all of your symptoms into consideration and would probably do testing earlier too.   I would bypass your gynecologist altogether.   If she tests you and finds something, she will only refer you to a gyne/onc anyway.  Why torture yourself in the meantime when you aren't feeling well.   

    I went for almost a year trying to find out what was wrong with me and I was told I was depressed to other things.  In the end, my gyne did a hysterectomy (not because of cancer) but he indicated to me that I had severe endometriosis.    It wasn't until after the hysterectomy that they found cancer.      I am only telling you this because I kept going back to the doctor because I wasn't feeling right (pain with intercourse, bowel issues, generally ill, bad stomach pains, etc.).   But I knew these symptoms where different from before and not right.  Sure, I was given narcotics for pain, etc. but I knew something was wrong.   Also, I am told my case was "complicated" whatever that means.  

    Take control of your care.  You are only one of millions of patients and everyone is different.   It is ok to seek another opinion.  

    I am glad to see that you are thinking this out and not totally panicing.   When you take control, you will have a more relax feeling.   

    My best to you.

    Kathy

    Hi April

    I agree with Kathy.  Get a second opinion from a gyn/oncologist.  I can't believe that the gyn made a diagnosis based solely on what you described as your symptoms without further testing, given your family history.  Please keep us posted.  I will be hoping and praying that you have a non-cancerous issue (which is very possible) but if not, know that we will support you!

    Take care,

    Kelly

  • susangr
    susangr Member Posts: 64
    2nd Opinion Needed by Gynelogical Oncologist...

    I  support what others have said too.  Don't wait.....get refereral from your GP.   With your family history they should also test you for Lynch Syndrome.   While waiting on your appointments collect information about all your relatives, birthdays, ages, deaths, reason for deaths etc.....as you will be needing to provide this information too.  It's actually a good idea for us all to do this because one times this information is very hard to get.   As hard as it is keep pushing to be heard.    Sincerely  Susan

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    One step at a time

    April, my heart goes out to you, as I know how terrifying it is not to know what is happening with one's health. I agree with the sage advice you have received so far - run , don 't walk to a gynecologic onchologist.  Write down all your questions before you see a doctor so you don't forget what to ask. Bring an advocate - friend , family- who can listen with a second ear.  For example, when I saw my gynecologic oncologist to discuss my initial treatment plan, I brought with me my brother , a plastic surgeon, my sister-in-law, an RN and my partner , a social worker. My background is in mental health , so I felt I had my bases covered!  I suggest you arm yourself with as much knowledge about your situation as you can handle. Get all your medical records as you ought to read them and may need them for a second opinion.  Most of all don't panic! It is likely to be less serious than you think.

    i wish you the very best outcome!

    Cathy

     

     

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    One step at a time

    April, my heart goes out to you, as I know how terrifying it is not to know what is happening with one's health. I agree with the sage advice you have received so far - run , don 't walk to a gynecologic onchologist.  Write down all your questions before you see a doctor so you don't forget what to ask. Bring an advocate - friend , family- who can listen with a second ear.  For example, when I saw my gynecologic oncologist to discuss my initial treatment plan, I brought with me my brother , a plastic surgeon, my sister-in-law, an RN and my partner , a social worker. My background is in mental health , so I felt I had my bases covered!  I suggest you arm yourself with as much knowledge about your situation as you can handle. Get all your medical records as you ought to read them and may need them for a second opinion.  Most of all don't panic! It is likely to be less serious than you think.

    i wish you the very best outcome!

    Cathy