How many Drs.?

Primavera

Fridays Child said:

Primavera

My apologies.  I misunderstood what you said at first about your friend.   Yes, many women do not have further treatment.  The doctors at my cancer center all meet and discuss cases, and they recommended the brachytherapy.  Even though mine was less than 50% through the myometrium, it was close, so I was almost 1b.  In addition, my family history for cancer is bad, although I don't know if that influenced the recommendation. 

But yes, my doctors were astonished at my recurrence, especially so late.  Although who knows at what point it might have been visible on a scan.   Two years out, nothing.  They went back and looked at that scan again, knowing where it was, and still couldn't find it.

Just don't ever let anyone tell you that if the pain is intermittent, it's not cancer.  Currently the company that approves or denies scans for my insurance company is refusing a PET scan because "if it comes and goes, it's not cancer," despite the documentation that I am living proof  to the contrary.

I've learned a lot here

...about being proactive and vigilant, and about all the insurance companies denials. Hope it all goes smoothly for you.

Fridays Child

Primavera said:

I've learned a lot here

...about being proactive and vigilant, and about all the insurance companies denials. Hope it all goes smoothly for you.

Thank you

Thanks, Primavera.  Just to clarify, it was a year and a half ago that my recurrence was found.  I had radiation and chemo and finished up last summer.  Taking letrozole now.  So far so good, as everything is shrinking, but I haven't yet been declared NED.  

I'm glad your tests are coming back clear and hope you get good news from the genetic testing.

Fridays Child

Primavera said:

Fridays Child

You had adenocarcinoma stage 1, grade 1, had radiation and then seven years later you had a recurrence? I have a friend who had that and was not given any treatment. Do you mind telling me where was your recurrence?

Primavera

Yes, unfortunately that's what happened. Well, it was discovered six years later.  I had occasional pain in my hip, had a CT scan a couple of years after surgery - nothing showed up.   Because it was intermittent, it was assumed to be due to aging.  It continued and became more frequent and eventually I went to an ortho doctor who got an MRI, which showed a pelvic wall tumor that invaded the hip joint.  When I had the PET scan it showed mets to both lungs.

May I ask where your friend's cancer recurred, and why they chose not to treat it?

mamlicsw

TeddyandBears_Mom said:

Mary Ann, I got 5 brachy

Mary Ann, I got 5 brachy treatments. They were a lower dose than the standard 3 to reduce any damage to my vaginal tissue. You may want to ask them if that is the reason for the 6. I can tell you it has been 3.5 years since my treatment and I haven't had any issues. I stopped using the dialator about a year ago and so far, so good. I'm still sexually active but not nearly as often as we used to be... Hope this helps!

Love and Hugs,

Cindi

Thanks Cindi

I will definitely ask and I thank you for your response.  In my head, I was thinking she was recommending 6 treatments because my cancer type is more aggressive than those who get three treatments.  I try not to get too far ahead of myself when I don't have the information to make a reasonable conclusion, but my anxiety gets the better of me unfortunately.  I know a lot of us fill in the gaps of our knowledge with our fears!

Love and Hugs to you as well,

Mary Ann

Forherself

Fridays Child said:

Primavera

My apologies.  I misunderstood what you said at first about your friend.   Yes, many women do not have further treatment.  The doctors at my cancer center all meet and discuss cases, and they recommended the brachytherapy.  Even though mine was less than 50% through the myometrium, it was close, so I was almost 1b.  In addition, my family history for cancer is bad, although I don't know if that influenced the recommendation. 

But yes, my doctors were astonished at my recurrence, especially so late.  Although who knows at what point it might have been visible on a scan.   Two years out, nothing.  They went back and looked at that scan again, knowing where it was, and still couldn't find it.

Just don't ever let anyone tell you that if the pain is intermittent, it's not cancer.  Currently the company that approves or denies scans for my insurance company is refusing a PET scan because "if it comes and goes, it's not cancer," despite the documentation that I am living proof  to the contrary.

Pain is subjective, in other words

Practitioners have to take your word for it.  If you are worried about it, the pain is constant if you know what I mean.

Forherself

Primavera said:

Fridays Child

My friend's cancer didn't recurred. She had adenocarcinoma stage 1a, grade 1. I usually don't see it treated by anything other than a hysterectomy, so that's all she got. I was surprised you had a recurrence with such a low stage and grade. Also surprised you got brachytherapy. I got 3 treatments of brachitherapy because mine was stage 1a, grade 3. I hope everything goes smoothly with your treatment. Hugs.

As far as 1A

There are different levels of 1A. , no malignancy in the hysterectomy specimen, malignanncy confined to the endometrium, and myometrial invasion to 50%.  They have different treatments but are all 1A.  

Fridays Child

Forherself said:

Pain is subjective, in other words

Practitioners have to take your word for it.  If you are worried about it, the pain is constant if you know what I mean.

Thank you

Yes, I'm learning that.  We'll see what happens with the next order.

Fridays Child

Primavera said:

Fridays Child

My friend's cancer didn't recurred. She had adenocarcinoma stage 1a, grade 1. I usually don't see it treated by anything other than a hysterectomy, so that's all she got. I was surprised you had a recurrence with such a low stage and grade. Also surprised you got brachytherapy. I got 3 treatments of brachitherapy because mine was stage 1a, grade 3. I hope everything goes smoothly with your treatment. Hugs.

Primavera

My apologies.  I misunderstood what you said at first about your friend.   Yes, many women do not have further treatment.  The doctors at my cancer center all meet and discuss cases, and they recommended the brachytherapy.  Even though mine was less than 50% through the myometrium, it was close, so I was almost 1b.  In addition, my family history for cancer is bad, although I don't know if that influenced the recommendation. 

But yes, my doctors were astonished at my recurrence, especially so late.  Although who knows at what point it might have been visible on a scan.   Two years out, nothing.  They went back and looked at that scan again, knowing where it was, and still couldn't find it.

Just don't ever let anyone tell you that if the pain is intermittent, it's not cancer.  Currently the company that approves or denies scans for my insurance company is refusing a PET scan because "if it comes and goes, it's not cancer," despite the documentation that I am living proof  to the contrary.