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kellieporter
@kellieporter

Posts: 3
Joined: Apr 27, 2018

ASCUS pap one year out

Posted by @kellieporter, Fri, Feb 15 7:39pm

I just found out that the two paps that I had, 6 and 9 months out were not normal as my doctor relayed, but "insufficient" and with no HPV. Now, one year in remission, the pap is ASCUS with no HPV. But her is the complicating matter: I was Stage IVA colon cancer (squamous cell), but they are not sure if it's primary of colon or metastatic from cervix. The reason for the uncertainty is that I had a hysterectomy a few years before diagnosis. So when I look at my medical records, I see it described as everything from cervical to colon to rectal cancer. So, anyone with this weird diagnosis… and, separate question, anyone ASCUS negative HPV one year out from treatment? I've read it should go in the opposite direction in time, so I'm nervous about recurrence.

REPLY

Hi, @kellieporter – that would indeed be confusing to look at your medical records and see your medical situation described as everything from cervical to colon to rectal cancer. I think that having nervousness about recurrence is very normal, and something that many Connect members who've had cancer diagnoses can relate to.

As you try and decipher what you are seeing in your medical records, and also wonder about others who may have been ASCUS negative HPV one year out from treatment, I'd like to invite some members to join this conversation and add their perspectives, like @travelgirl @sunshine61250 @stowe @nanook1970 @jin51 @gingerw.

@kellieporter – have you had the chance to speak to your doctor about your findings in your medical records and the confusion that brings up for you? If so, what has he or she said about what you have read?

@kellieporter
I would be asking that Dr 9 million questions. Plus are you able to take medical records to get a second opinion? I suggest you doing and making sure the place you g for the second opinion is certified national cancer institute.

You can also contact the live strong. org. they have several free resources and programs for patients who have been diagnosed with cancer. One resource helps you with understanding your medical records and they provide assistance with explaining in layman's terms the different treatment options.

Here is the website you may want to give them a call.

https://www.livestrong.org/

I wish you best.

Please keep in touch with us on here and let us know how you are doing?

All my best ..
Jackie

@travelgirl

@kellieporter
I would be asking that Dr 9 million questions. Plus are you able to take medical records to get a second opinion? I suggest you doing and making sure the place you g for the second opinion is certified national cancer institute.

You can also contact the live strong. org. they have several free resources and programs for patients who have been diagnosed with cancer. One resource helps you with understanding your medical records and they provide assistance with explaining in layman's terms the different treatment options.

Here is the website you may want to give them a call.

https://www.livestrong.org/

I wish you best.

Please keep in touch with us on here and let us know how you are doing?

All my best ..
Jackie

Jump to this post

My doctor is out on maternity leave, so my 9 million questions are all bottled up.

All I have are several voicemails from the office after I questioned why I would have two normal paps at 6 and 9 months out and, at one year out, an ASCUS pap and shouldn't that be a red flag?

They called me back and left voicemails, the first letting me know that the paps were really not normal but insufficient/no HPV and that they'd follow up. The second voicemail came from the doc's PA, explaining that an insufficient pap with no HPV is considered normal by their office, that a negative HPV is the most important element in worrying about relapse.

And that response would be great, if we knew my cancer was primary cervical, but we don't. My cervix had been gone, due to a hysterectomy (it was a year and a half) before the lime of a squamous cell tumor was found in my colon and the same type of cancer in adjacent lymph nodes and peritoneum. When I told my primary care doctor about the three paps and the cancer center's communication from normal, normal, ASCUS, she said she didn't understand why they would say it was normal instead of being transparent and/or saying "come back in and we'll redo the pap." My primary care doctor straight-up said insufficient specimen does not mean normal. And the fact that the cancer center communicated this not once but twice has made me lose trust. I'm probably going to have to get another cancer doc, because I'll be questioning and nitpicking everything going forward.

So, the above thoughts I have to deal with emotionally, something I didn't need.

But from a purely factual perspective, here is my biggest question: is ASCUS one year out from completion of chemotherapy and radiation (including internal) a warning sign?

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