Newly Diagnosed with DCIS

blackjack

Hi Dink,

So glad you posted, was worried about you. Congratulations on your new granddaughter. I bet she is so beautiful..enjoy her.

I am sorry to hear about your surgeries and I hope that you are healing well. I would diffenently tell your gyn about the ovary pain and ask for a tranvaginal ultrasound to check things out. You could have a cyst on the ovary which is causing all your pain. I also would ask for a CA125 blood test to test for ovarian ca. This test measures for ovarian ca levels in the blood. I had this all done when I had my rt ovary out last Feb.

As for me I  am doing good. My one year is coming up in April and I am feel wonderful...I eat very healthy, take lots of vitamins and exercise every day at the gym. My QOL is very important to me and I will try to stay as healthy as I can.

Wishing you good health and happiness...Here is a big hug to you.

Keep me posted on how you are doing.

Take care,

Blackjack

1965sally

Hi Dink.  I think you should definitely mention the pain from your ovary!  The BRCA gene mutations that run in families carry a risk of ovarian cancer along with breast cancer.  The tests that Blackjack recommends are the best way to detect it.  I just had my genetic test last week, and the counselor said that the genes can pass just as easily from your dad's side as from your mom's side.  The doctors who told you that you weren't at risk because it was your dad's family may have had old information.  If you get that ovary checked out and it turns out to be due to the other problems then at least you have peace of mind. 

You may have already seen your gyn by the time you read this.  I hope she was cooperative.  It's not a waste of time to mention something that is stressing you out!  Stress complicates things, affects healing and mindset.  I'm just going on what I've read here and my own experience, giving my two cents.  You've got a lot going on.  Keep us posted.

dink

Hey you guys:

I went to the GYN today for my check up and it wasn't so good. 

We are not going to officially do the gene testing we are going to do the tests as if I were positive.  What that means is:  I had the CA125 blood test drawn today.  I will have an abdominal and pelvic sonogram performed tomorrow at 11:00.

If the above comes back positive, the new problem will be: 1.  if we remove the ovaries then I have no hormones and if placed on low dose hormone we could make the DCIS cells grow due tot he hyperplasia cells that are throughout the breasts.  I the ovaries are ok and no cancer - we are still "feeding" the cancer cells.  He's not sure about what to do so I may go for a second opinion but he wanted to do these tests first.

As far as me thinking my bladder had dropped - NOT!!!  He did the pelvic exam and discovered that it wasn't the bladder dropping but the pelvic floor muscles are very tense and dropping down.  It's almost like someone whose never had sex.  I had to laugh at that - married 23 years.  This could be caused by an old injury to my back that causes my muscle to atrophy and may be pulling on this area and makes it feel like it's my ovary when in reality it's the muscle that wraps around from the gluteal and goes around to the front and has been known to tighten so much it pulls my hip out of joint.  This is an old problem in which I pop the left hip back in place when the muscle pulls too long and the pain get really bad.  When the joint is out it cause my pubic symphasis bone to become dislocated also.  The other problem could be that the endometriosis could have come back or it may just be cancer.  We will know more tomorrow on this after the sono.

As far as the bladder is concerned - the muscle at the opening where the urthrea connect is weak and cannot hold the urine.  Therefor I leak or move just right or giggle and I urinate on myself.  They are talking about doing something called "tapping the bladder."  This is done outpatient like on Friday and back to work on Monday barring no complications. 

As far as the muscle hangng down in the vagina, the doctor wants me to go for therapy unless they find something else with the sono.

I'm not sure about any of this due to my modesty and having someone other than my GYN or my husband look, feel, or see my private areas.  It's all in mind and I know that but it doesn't make it any easier. 

Thank you all for your kindness. Things are getting a little too embarrasing.  I will let you guys know the updates as I get them.

1965sally

Hi Dink.  Regarding modesty..., before I got cancer I used to get annoyed with cancer survivors who would always mention their various body parts.  I thought, why can't they just say "cancer" and not tell me which private part it's located in???  too much information!  Then when I was diagnosed I learned that each body part cancer is different, has a different prognosis, and that breast cancer is one of the most familiar and more successfully treated ones.  So I told people I had breast cancer instead of just saying cancer, in order to help them feel reassured that it's not going to kill me.  And I have tried to be very open and update my friends on my treatment, but it requires talking about my breasts a lot - which feels very awkward and I'm sick of it!  Anyway, I'm just saying I hear you. 

I know you must be on pins and needles waiting for test results.  Nice to know there could be something else explaining the pain.  I'll check back for an update tomorrow.  Hang in there.

dink

1965Sally

My abd./pelvic sono are normal.  Not sure what's causing the muscle thing.  My CA125 came back positive.  My doctor wants to do the gene testing but my insurance will not cover it and it costs $3,120.00 up front - don't have it.  We will repeat the CA125 in one month at which time if it still elevated we will remove the ovaries any way and he will look at the breast thing again and if there is anything abnormal he may go ahead and ask for bilateral mastectomies with reconstruction at the saame time.  The insurance will pay for this.  My HMO has a no pre-existing clause so I'm ok with doing the gene testing.

I hope everything is going ok with you guys.

dink

1965Sally

My abd./pelvic sono are normal.  Not sure what's causing the muscle thing.  My CA125 came back positive.  My doctor wants to do the gene testing but my insurance will not cover it and it costs $3,120.00 up front - don't have it.  We will repeat the CA125 in one month at which time if it still elevated we will remove the ovaries any way and he will look at the breast thing again and if there is anything abnormal he may go ahead and ask for bilateral mastectomies with reconstruction at the saame time.  The insurance will pay for this.  My HMO has a no pre-existing clause so I'm ok with doing the gene testing.

I hope everything is going ok with you guys.

blackjack

Hi Dink,

I am sorry to hear that your insurance won't pay for your testing. If your Ca125 came back positive why doesn't the md just take out the ovaries and be proactive against this bc for you? Has your md done a breast MRI for you? I think some times we just have to push them along to get us feeling better. This waiting game stinks...and causes so much anxiety for us bc ladies. Oh I am soo mad for you.. I hope you are feeling better soon and kick that md in the b*tt to get going.

I am sending a big HUG.. let me know how you are doing..

Blackjack

Anonymous

Glad to hear that your abd/pelvic US was normal. Did you also have an internal transvaginal US? That can give a better visualization of the ovaries as they are deep in the pelvis. One thing to remember is that the CA-125 blood test is not a reliable test, especially in premenopausal women. The "red flag" number is 35, but it can be elevated for many reasons other than ovarian cancer. (my gyn said a high number doesn't mean you have oc, and a low number doesn't mean you don't).  I had to have a total abdominal hysterectomy due to large ovarian cysts which ruptured; resulting in immediate surgical menopause, but fortunately, everything was benign.

1965sally

Thanks for the update.  Insurance sure complicates things in this country.  How do you feel, Dink?

dink

Hey gang:

Thanks for the concern.  I feel ok just a few pains every now and then on the left ovary side.  My CA 125 was 50.3 and when we repeat the test 4-14-08 and it comes pback positive then we will remove the ovaries.  Then the next question is should I start hormone pills to decrease the menapause symptoms.  Remember my DCIS was hormone positive.  I also will have my bladder test on 4-7-08 and I told him (my md) that if the ca125 was still elevated and he removed the ovaries then I wanted the bladder "tapping" done at the same time.  I also wanted to go ahead and have the bilateral mastectomy at the same time.  I'm raising my grandson and I need to be around for a long time.  We know the hyperplasia cells are in the breasts throughout which will eventually  mutate into cancer cells it's just a matter of when.

Things are really great and I have a good outlook on things.

Thanks,

Dink

blackjack

Hi Dink,

Glad you posted and that you are feeling better. I would say that if your CA 125 was that high then I would remove your ovaries. As for the hormonal meds they would give you AI's because you are now post menopausal. I don't know if they would do bladder reconstruction and a Bil mast. at the same time. You would be under anaesthesia a very long time..and also you would be in a lot of pain too. I hope all goes well..keep posted your update.

Be healthy..be happy..

Take care,

blackjack

1965sally

Thanks for the updates!  Take care.

dink

Hi

My CA125 test came back at 15.5 today (4-14-08) so the MD said it was normal but he wanted to one it one more time next month and samething if it is elevated then ovarian surgery if not we will run this test once a year. 

I will see the other GYN MD in his practice 4-18-08 for possible bladder surgery.  Guys, I think I'm just paranoid now because my mom had surgery last week and they removed a 10cm X 10 cm mass from her right ovary and her left ovary had two cysts on it.  She's doing fine and it was not malignant. All is great at this point.  I hope you guys are doing great also.

Dink

Anonymous

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Beesie

To anyone newly diagnosed or currently going through treatment, just my suggestion but I think it's probably best to ignore the above post from MikeyBB (and his 25 other identical posts from this evening).  There are no miracle cancer cures.

dink

Hi Ladies

I haven't posted in a long time.  I'm just writing to see how everyone is doing.  I'm doing fine.

Dink

dink

Hello everyone, I haven't posted to this site for a long time.  I'm doing well but started a new job May 23, 2011 and since being there 4 nurses have been found to have breast cancer or some type of cancer.  Breast cancer can attack anyone at any time and we need to continue to support each other.  I have seen several patients that hae been recently diagnosed with  breast cancer and it breaks my heart.  I have referred them to this site for support and encouragement.  Thank you all.

Dink