Could it be OC or just my imagination running wild again???

Kitty3571
Kitty3571 Member Posts: 48
edited March 2014 in Ovarian Cancer #1
Hello, new to the OC posting but unfortunately not new to this site. I'm a 2-1/2 year breast cancer survivor. Was diagnosed with Stage 1 BC in Feb, 2006 - spent 1-1/2 years in treatment and have been doing okay except for a few scares and nervous doctor checkups, etc...the usual paranoia after anyone has been diagnosed with any type of cancer I guess

My new and latest issue is ovarian cysts - I'll back up a bit. Back in April, 2008 I stopped the birth control pill because my husband finally had a vasectomy. I had continued taking the pill even through my breast cancer treatment because my type of cancer was estrogen & progesterone negative. I still wanted to get off the pill though and that took some time. So I finally quit and have not had a period since. I started having hot flashes and constant urination.

After a few months of this, I went to my GYN to find out if I was experiencing early menopause possibly due to chemo & radiation received from 2006/2007 as this can sometimes occur. He said he thought that I was too young (42 now) and that I'm most likely just pre-menopausal and would expect that my period would someday return.

He gave me an internal ultrasound (fun) and diagnosed me with one large (4.2 cm) ovarian cyst on my left ovary. Told me that it might go away and sent me on my way. The next couple of months I started feeling more pain and discomfort on my left side and went to get re-examined again about 2 weeks ago.

The left cyst has now grown larger to 6.4 cm and I now have a smaller one (2 cm) on my right ovary. He told me that it's up to me to choose to have surgery to remove them. That it really depended on "my quality of life and how long I choose to deal with pain & symptoms associated with having these cysts"

He told me that they would make 3 small incisions (belly button area & pelvic area) to remove the cysts but more than likely that during the removal they would have to end up taking the entire ovaries out, especially on the smaller cyst. Worst case scenario, they would have to end up doing a complete hysterectomy!

I'm just perplexed on what to do at this point. If they take my ovaries, that will throw me into immediate menopause and the GYN said that menopause brought on by surgery like that would be much worse than experiencing it normally later in life. The worst thing is that I won't be able to take any HRT's for any symptoms due to by breast cancer history.

So what do I do? They tell me that the pics of the cysts are clear and that means they are just fluid filled and that it's not cancer but I'm opting to have them removed just in case. I'm very confused at this point which way to go and wanted to get more input on my specific situation.

Not sure if uterine cancer can be hereditary - my mother had it when she was 28 years old - they did a complete histerectomy and she has been fine ever since.

Thanks for listening and look forward to any posts.

Kitty3571

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    #2
    Needle biopsy
    I believe they can aspirate a water filled cyst with a needle and test the fluid. That would be less invasive than surgery. My sister-in-law had that done. I would get a second opinion before surgery. Have you had a CA-125 blood test? Not really great for ovarian but an indicator if it is high. I believe in getting all the information you can when making tough decisions. Saundra
  • Lauracec
    Lauracec Member Posts: 101
    #3
    gyn/onc
    if the biopsy is not normal it is really important to have the surgery done by a gyn/onc. not just a gyn. Laura
  • Cindy809
    Cindy809 Member Posts: 1
    #4
    Lauracec said:

    gyn/onc
    if the biopsy is not normal it is really important to have the surgery done by a gyn/onc. not just a gyn. Laura

    Qualified GynOncologist
    I would recommend for you to make an appointment with a gyn oncologist. Ask for a CA125 test, CT, MRI or a TVS: Transvaginal sonography (ultrasound). It is probably not ovarian cancer due to the fact that you were on birth control pills. My daughters gyn said that staying on the pill is a preventative measure. Not sure if I agree. I would definately have a gyn oncologist do the surgery.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
    I agree
    Hi Kitty, I agree with Cindy. You need to get a gyn/onc, CA125, MRI etc before deciding anything. They also told me that they were pretty sure my cysts were only fluid filled (both 4cm) and not cancer. They were wrong and I ended with OVCA 3Ç dx.

    Take care,
    kathleen:)
  • Kitty3571
    Kitty3571 Member Posts: 48
    #6
    Thanks so much...
    Thank you all so much for your comments. I really appreciate the input. Yes, I'm confused on what to do. My insurance is referral only so I will make an appt. with my primary care doctor, get her opinion as well and maybe get a referral to a GYN/ONC before going any further. To be honest, I didn't even know that such a physicians position existed. My current Onc only sees me once a year now and basically if my symptoms don't have anything to do with my already existing diagnosis of breast cancer, he doesn't seem to be worried about anything. Wish I could sleep at night with that thought. About a year ago, during my normal annual pap test, the results were "right on the verge of being suspicious" per my GYN. He ordered a tissue biopsy (this was before my cysts) and the results were negative. When I informed my Onc of this suspicion, he just shrugged it off. I know that Dr.'s aren't really that worried as their always nervous patients about every little ache and pain, etc...but if I don't take my symptoms and every little thing into consideration and do something about them, who will? The same thing happened with my BC diagnosis - I found my own lump after having severe breast pain for over a month. Never had a mammo (was 39 at the time) and the Dr.'s told me that it's most likely nothing. I was young and the fact that I was having pain was good because most cancer isn't painfull??? They were wrong - I'm thankful I had the pain, otherwise who knows how long it would have been until it was found! Thanks again for listening. Kitty
  • floridajo
    floridajo Member Posts: 480
    #7
    Kitty3571 said:

    Thanks so much...
    Thank you all so much for your comments. I really appreciate the input. Yes, I'm confused on what to do. My insurance is referral only so I will make an appt. with my primary care doctor, get her opinion as well and maybe get a referral to a GYN/ONC before going any further. To be honest, I didn't even know that such a physicians position existed. My current Onc only sees me once a year now and basically if my symptoms don't have anything to do with my already existing diagnosis of breast cancer, he doesn't seem to be worried about anything. Wish I could sleep at night with that thought. About a year ago, during my normal annual pap test, the results were "right on the verge of being suspicious" per my GYN. He ordered a tissue biopsy (this was before my cysts) and the results were negative. When I informed my Onc of this suspicion, he just shrugged it off. I know that Dr.'s aren't really that worried as their always nervous patients about every little ache and pain, etc...but if I don't take my symptoms and every little thing into consideration and do something about them, who will? The same thing happened with my BC diagnosis - I found my own lump after having severe breast pain for over a month. Never had a mammo (was 39 at the time) and the Dr.'s told me that it's most likely nothing. I was young and the fact that I was having pain was good because most cancer isn't painfull??? They were wrong - I'm thankful I had the pain, otherwise who knows how long it would have been until it was found! Thanks again for listening. Kitty

    Kitty
    I agree with all the other ladies,you need to investigate this further. Go to an Onc/gyn you might only find one or 2 depending where you live as they are a small group of Onc. but he or she will take better care of you. I liked Saundras idea of having a needle biopsy. Also if they are causing pain I would elect to have them removed with a gyn/onc on stand by to give you a look over. That is what my sister did,and although she got good news,all masses were benign the Onc/gyn also did a cytology test(something a regular gyn probably wouldn't do)which is where they found the cancer,she is now staged a 1c,never had any chemo. She's doing fine and it was almost 4 years now for her. Good luck and keep us posted,I hope it all turns out well for you..~~~Joanne
  • groundeffect
    groundeffect Member Posts: 639 Member
    #8
    Kitty3571 said:

    Thanks so much...
    Thank you all so much for your comments. I really appreciate the input. Yes, I'm confused on what to do. My insurance is referral only so I will make an appt. with my primary care doctor, get her opinion as well and maybe get a referral to a GYN/ONC before going any further. To be honest, I didn't even know that such a physicians position existed. My current Onc only sees me once a year now and basically if my symptoms don't have anything to do with my already existing diagnosis of breast cancer, he doesn't seem to be worried about anything. Wish I could sleep at night with that thought. About a year ago, during my normal annual pap test, the results were "right on the verge of being suspicious" per my GYN. He ordered a tissue biopsy (this was before my cysts) and the results were negative. When I informed my Onc of this suspicion, he just shrugged it off. I know that Dr.'s aren't really that worried as their always nervous patients about every little ache and pain, etc...but if I don't take my symptoms and every little thing into consideration and do something about them, who will? The same thing happened with my BC diagnosis - I found my own lump after having severe breast pain for over a month. Never had a mammo (was 39 at the time) and the Dr.'s told me that it's most likely nothing. I was young and the fact that I was having pain was good because most cancer isn't painfull??? They were wrong - I'm thankful I had the pain, otherwise who knows how long it would have been until it was found! Thanks again for listening. Kitty

    Laparoscopy
    Hi Kitty,

    My husband's aunt (73 yrs. old) had her ovaries removed late last year, after a cyst that she's had for years appeared to have grown. Her sister died of OVCA, so there was reason for serious concern. Of course, she didn't have to go through menopause again, but it's been a relief for her to no longer be concerned about the cyst. The surgery was laparoscopic, and she was released the next day from the hospital, spent one night in a hotel with her gynecologist son, and then rode some 500 miles the next day to spend time with his family.

    I know being thrown into menopause at your age might be bad, but then again, maybe it wouldn't be - you won't know unless you're there. I thought I was escaping all the hot flashes and other menopause effects - I didn't have any to speak of after my total hysterectomy when I was 48 (and still having periods). Now that I'm taking tamoxifen to suppress estrogen, I'm getting the full effect.

    When I was 42, I had surgery to remove uterine fibroids, and was given Lupron, which suppresses hormones (hopefully to shrink the fibroids). That gave me some serious hot flashes.

    I have a friend (in her mid-forties) who had treatment for breast cancer the year before I was diagnosed with ovarian cancer, and she had the misfortune to be diagnosed with ovarian just about the time I was getting done with chemo.

    Birth control pills are thought to lessen the chance of OVCA because of the lessened wear-and-tear of the walls of the ovaries. My support group's members have generally pooh-poohed that idea, along with the theory that having children can do much the same.

    If you were to have your ovaries removed, you would be almost certainly assured of not getting ovarian cancer. Has anyone suggested genetic testing for you? The breast cancer gene is what they look for, and if you're positive for a BRCA gene, you would surely be watched closely for ovarian cancer (it's also associated with colon, prostate, and skin cancer).

    I totally understand your reluctance to go into menopause; that's why I opted for surgical removal of the fibrodids I had. When my gynecologic oncologist asked me why "the heck" I didn't have a total hysterectomy at that time, I told him flat-out I didn't think he appreciated having to face menopause prematurely. There's no point in me regretting that decision, but it would have prevented both the uterine and ovarian cancers I was diagnosed with at 48.

    Age should not be a reason for not suspecting ovarian cancer. I've read about pediatric ovarian cancer in a 7 year old girl.

    Sorry for going on so long about this, but I totally agree with the other women about getting in to see a gynecologic oncologist. Your history with breast cancer along with the problems you're experiencing should open the door immediately. We're all concerned when we here of the concerns of women who are having problems, because it seems to be easy for doctors to dismiss them because you don't fit the profile they have in mind for OVCA. I kept getting comments about being so young for it when I was 48...

    Keep us up to date on what you're doing with this. You know we'll be thinking about and hoping things will turn out to be minor for you!

    Sue
  • Unknown
    Unknown
    #9
    This comment has been removed by the Moderator
  • Kitty3571
    Kitty3571 Member Posts: 48
    #10
    Thanks again for the input
    Thanks girls for the information...it's very helpful
    Waiting to get my appt with my family doc to get the referral to a GYN/ONC to get a second opinion. Amazingly, just yesterday I started bleeding, I'm guessing this is the return of my long-lost period? At first I thought I may have ruptered one of the cysts but I'm not having any abnormal pain. My GYN said that my period might return some day but it's been gone for 7 months. I'm sort of bummed, I was enjoying the 'no period' thing. Oh well, we'll see how it goes. I'll keep a post with what I find out. Thanks again! Kitty
  • AlyssasMom
    AlyssasMom Member Posts: 2
    #11
    Hi:

    I had a total hysterectomy on May 9th and I am still waiting for menopause. :-) I have four sisters who are older than me (one by 20 years) and all they've done over the years was to tell me how horrible menopause was. I somehow managed to escape it's wrath. I guess the cancer figured I deserved something after my ordeal. :-) I hear that there are a bunch of herbal remedies/teas that are quite helpful for people with symptoms of menopause. But all in all, I would not be afraid to get the hysterectomy. It may save your life one day. My surgeon told me, if he were a woman, he would have a hysterectomy after having completed pro-creating. He believes that the deadliness and sneakiness of the disease is not to be played with. Good luck!

    darthi
  • ColleenN
    ColleenN Member Posts: 73
    #12
    Genetic testing
    I agree with the other ladies on having a few more tests before you jump into menopause. Although, if you are in pre menopause it might not be as bad as the dr. says. I was 44, almost 45 when I had surgery this summer, have not taken any hormone replacements, and haven't had as much as a hotflash (thank goodness, and maybe I was just lucky). Did you have genetic testing (BRAC) with your breast cancer? From what I've read, breast, ovarian and colon cancer can all be linked together if you have the right/wrong? genetic makeup. It can't say for sure if you will or will not get another type of cancer, it just shows that you may have more of a chance of getting a second type. Good luck and keep us posted.

    Colleen
  • Kitty3571
    Kitty3571 Member Posts: 48
    #13
    Finally got into see a GYN/ONC
    After several weeks of trying to get an appt., I was finally able to see a Gyn/Onc - at the very least to get a second opinion on the cyst ordeal. He examined me and sent me for a full pelvic exam....had that on 12/16, the tech told me that the cyst on the right (2.9 cm) they couldn't locate and think it has gone away. The large one on the left (6 cm) has now shrunk to approx. 4 cm. So I guess this is good news. Maybe this has happened becuase I am now getting my period again? I'm waiting for the results to be sent to the GYN/ONC. He will most likely say that I can wait on the surgery decision. I would still like a blood test though. My biggest fear, as we all have is misdiagnosis!!! Thanks for listening and Happy Holidays to everyone. Kitty

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