Need some advice

meaganb

Hi all! Popping over from the H&N board.

Background: I was diagnosed with Adenoid Cystic Carcinoma in 2012 at age 27. There is no known chemo treatment so the tumor was surgically removed & then followed with 6 weeks of radiation. 

 

Current issue: I have had two babies since treatment, I have 3 kids all together. My youngest was born in March 2015. The PP bleeding never seemed to stop so at my after baby well check (May 2015)my OBGYN did transvaginal u/s. It was quick, but they said everything looked normal. I was told to call back if bleeding didn't stop after another week. It stopped. The following month my family made a cross country move. I started my period like clockwork & again bleeding never stopped. I made an appt with a new OBGYN. They got me in fairly quickly. Pelvic exam was done & Dr said my uterus was enlarged but could just be cysts. I was put on progesterone and the bleeding stopped. Periods have been normal since, except for being more painful & heavier than before my last baby. In July I followed up with my new OBGYN & he also did my pap. Everything was normal on that front. He did however mention that if I were 5 years older & presented with the same symptoms, he would worry about ovarian cancer because I am overweight. 

Since July I have noticed some trouble completely emptying my bladder, recurring upset stomach and some slight tenderness in my belly. So, I am wondering if I am completely over thinking things and all these things can be attributed to stress, having a baby 7 months ago, my weight, etc. Or, should I be concerned enough to request another appt with my Dr & ask for an ultrasound? I feel like I have done a decent job in the last 3 years of not assuming all aches and pains might be related to cancer but I find myself being super uneasy, even without a long list of symptoms.  Also, I have regular scans following my cancer diagnosis and had blood work and a full body CT scan done in April, although I don't think my blood work checks for the markers that a lot of you talk about because mine was a head and neck cancer. I also have no family history of breast or GYN cancers.

 

I also had a friend of mine who passed away from ovarian cancer at the very young age of 30. She was very overweight, but had just completely turned her life around & lost over 100 lbs. She went to the ER one night and they found very advanced stage cancer. She passed away about a week after debulking surgery. 

 

I am hoping that you ladies may be able to ease my mind a bit. I started lurking here occasionally when my friend passed away 2 years ago. I have followed a lot of your stories & admire you a lot.

 

Thanks for taking the time to read this, any feedback is appreciated.

Kaleena

Wow.  You sure have been

Wow.  You sure have been through a lot.

Anyway, all I can say that given the fact that you have had head and neck cancer, if you are not feeling well I would push for more tests.  However, don't be surprised if your tests come back normal.   From the time I was 44, I started feeling strange.   Had pain with intercourse, had lower back pain, bowels issues (thought I was having IBS problems).   I went to PCP who said I was probably anxious and wanted me to take depression pills - I did not.   Also sent me for a colonoscopy (it was fine).   Now the pain was getting more and more intense.  I went to my gyne who indicated I did have endometriosis.   I have had 3 C-section births.   I never knew I had that.   So he wanted to do an ultrasound.   The ultrasound was good.  Showed tilted uterus and a deep left ovary.  Other than that it was fine.   But my pain was severe at this time.  So he did a laparascopy which showed a lot of scarring and he said I should have a hysterectomy.

After the hysterectomy upon my follow up appointment I was told that they found cancer - it was on my ovary uterus and cervix - Endometrial Adenocarcinoma - Stage 3a, Grade 2 -  They were surprised becasue I was only 45 at the time.

So what I am saying is that if you feel something is going on ask for more tests.  Also, always tell ALL of your symptoms.   It could help.

The thing I find out with being a cancer survivor is who treats what when we are not treating.   Your PCP will say ask this doctor, that doctor will say check with the other doctor, and so on.  So you have to be upfront.   I asked my PCP for certain tests if I feel I need to what to know something or my GYNE/ONC.   It a shame, but sometimes they only look at what their speciality is and nothing more.   Be your own advocate.

My best to you,

Kathy

NoTimeForCancer

meaganb, I am sorry to hear

meaganb, I am sorry to hear what you have been through and the loss of your friend.  

You are right they are probably not looking at the same markers that they look for with oc, but that is not always a good indication of having oc or any of the gyn cancers.  

I agree with Kaleena that you are going to have to push, and perhaps you could ask for a endometrial biopsy or D&C to find out if there is anything going on there, but that would only help with the uterus, not the ovary. 

Tethys41

CA-125

Ask you OB/GYN to run a CA-125 blood test.  That is the marker for ovarian cancer.  I used to ask for it each year at my annual exam before I was diagnosed.  Ofthen doctors are hesitant to run one, but it should not be a big deal.  Alternatively, ask for a pregnancy test.  They often come back positive when ovarian cancer is present.  I hope your concerns are unfounded, but ovarian cancer is very often misdiagnosed before it is discovered.