Hi.
I’m up in the middle of the night again. I am a 50yo divorced mom in FL. I have 19 and 14yo daughters.
My youngest is just my heart walking around outside my body. We travel a lot and it has not been possible for me to hide my symptoms of urinary incontinence that have gotten worse. I use to have trouble going from hot outside Florida to icy ac because it would be so hard to not pee my pants, but it got worse over last 6 months. I started asking for medical support in January. Got an appt with a nurse midwife that works with a gyn that specializes in pelvic floor issues. I saw her in March and she didn’t even do a physical exam. She referred me to a pelvic floor pt that was $300+per session. I could not afford that. I had made a pap appt for May and told my girls all of this because I’m teaching them how to manage their own healthcare and spoke honestly about the challenges. When I went for my pap appt the pelvic exam hurt like hell and I had a 2nd degree vaginal tear with the birth of my youngest that wasn’t repaired well. The midwife said I had scar tissue. I bled like crazy for 4 days after that appt. I knew something was wrong. I didn’t want to go back to that practice because I thought she cut me with the speculum. I couldn’t get in with anyone else so I made an appt with the gyn in the same practice. I was in tears after her pelvic exam because it hurt so bad. She told me I had a vaginal laceration at 3:00 and she wanted to do a mri because it wasn’t healing.
I had to schedule the mri 4 times. The first time they cancelled because insurance denied my claim. I’m on a high deductible plan but I had $4k in my HSA; I could have paid it and been reimbursed. Second time insurance denied the abdominal scan but not the pelvic, but the radiology clinic cancelled both. Third time I went and no one had told me to give myself an enema….. it was impossible to hide from my girls and a lesson in advocacy they needed. I thought they would say I have a rectocele. Nope.
The MRI report says I have a mass 2x2.7cm and that it involves the base of my bladder. I had a biopsy with the oncologist that is positive for moderately differential squamous. Today I will call again to try to get my pet scan approved and continue to pray it’s not outside my pelvis.
Yesterday my youngest came back from summer camp and I told her about my diagnosis. It was the hardest thing I’ve ever done, so far. I wish so badly I could spare her this. I spoke to her amazing therapist and the therapist told me I should tell them the truth. I believe staying in my horrible marriage and the terror I’ve endured from my ex in the divorce is exactly why I have this. I don’t want them to think they have to tolerate those relationships. I want them to understand why it’s so important to me that they go to college and that there will be a means for that to happen if we can keep it together. I am not going to tell her I might die or that my life is her responsibility. But we have been struggling with her having the ability to manage big emotions and I’m her soft place; I’m afraid she’ll hold her feelings in to spare me. The therapist understands me and told me she’s got her. I’m so grateful she’s in our lives.
I’m not done raising my girls and that’s why I’m panicked. We’ve fought so hard to get where we are and I want to be here. With them.
Hi ThisIsNotGood and welcome to the group.
I hope you can get the petscan organised soon to be able to find out next steps. As MacMillan is a UK based charity, most of the discussion here will deal with our experiences of using the health system in the UK-we don’t require insurance to be treated under our health system as it is free at point of contact.
You are of course very welcome to be in the community, which I hope you’ll find to be helpful and supportive, but this was just to make you aware that our health system is different, and MacMillan cannot give advice on systems and care overseas.
Things will be very difficult for you as a single parent, so having a therapist to help will be a godsend. My daughters were much older when I had my original cancer diagnosis, but it was still difficult to tell them as we don’t live close. We want to spare our children, but being honest is the best thing to do.
I don’t know what happens if your petscan doesn’t get approved-do you know? Here in the UK we get any scans required automatically to complete the diagnostic process, so I had an mri and CT scan done immediately to plan treatment after my biopsy identified adenocarcinoma. My cancer was cervical, but growing into the vaginal wall. Later in the process I had more mri and CT scans, and then a petscan.
I hope in this group we will be able to help to support you through your diagnosis and treatment-I cannot imagine how difficult it must be to have to rely on decision makers in an insurance company to determine what happens.
I hope you’ll update us when you know more and stick with us if that can help.
Sarah xx
Hi Amy
I had cervical cancer which was the adenocarcinoma type. It is rarer than squamous cell for cervical cancer, and when I was diagnosed I was told that about 15-20% of cervical cancers were adenocarcinoma. Those figures may be different now, but treatment would have have been broadly the same.
I was diagnosed almost 6 years ago, but I did have a recurrence which was treated by surgery. I post in the vaginal cancer group due to the nature of the surgery I had-in fact I pop up in many of the different cancer groups where I have any relevant experience of surgery or treatment.
Fingers crossed for the scan approval-I have many friends in the States who regularly tell me about their difficulties with insurance companies so I have some understanding from them that it can be a bit of a battle!
Sarah xx
