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Carcinoma SITU?

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Krisea
Carcinoma SITU?

Hello,

I am newly diagnosed and just a 'little' scared. Had yearly paps...all normal. I am in the States so yearlys are covered under insurance. However, I skipped almost 2 years just due to being busy with the kids and two jobs...and just forgetting to schedule. I went in about 18 months ago and had my first slightly irregular smear along with a diagnosis of high risk HPV. They did a colposcopy and everything came back normal so they scheduled me to come back in 6 months. I went to that smear and again slightly abnormal but they said nothing to worry about and to come back again in 6 months. The last time I went in I had ASC-H with abnormal glandular cells. They did a colposcopy and that came back CIN II/III but glandular cells were normal. I was then scheduled for a Cone biopsy which I had performed last Tuesday. I received results today that they found Carcinoma in SITU as well as high grade dysplasia of both squamous and glandular cells. The doctor just referred me to an oncologist and told me that I would need a full hysterectomy and my ovaries removed. 

I have an appointment with the oncologist next Tuesday. I am just so nervous. Has anyone had this done and still maintained the diagnosis of Carcinoma in situ? I am so scared they are going to find more cancer.

I have also been dealing with rectal bleeding for the past few years. I had a colonoscopy and endocscopy done about a year ago and they just diagnosed me as having polyps and hemmheroids and fissures (sp?). I am so worried that this is also something more as well.

I am sorry to everyone that has gone through this. Trying to be faithful to God's plan in all of this.

 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hello!

i was also just diagnosed with adenocarcinoma in situ (AIS) after a colposcopy/punch biopsies, and I'm also in the states.  I just want to emphasize that in situ means "in site" or "in place" meaning it's stage 0 or pre cancer, not invasive, not cancer.  Dysplasia also isn't cancer, it's pre cancer.  So the fact they removed AIS and squamous cells during your cone biopsy is a good thing, the main thing you have to look for is clear margins with the excision.  He's likely recommending a radical hysterectomy because you already have children otherwise they would try a fertility sparing procedure.  AIS has the propensity of causing skip lesions where the abnormal glandular cells aren't contiguous and can occur further up the endocervical tract and even into the uterus which can routinely be missed on paps and colposcopies.  I myself am about to have a cone biopsy and hoping for the best!  I hope all goes well for you!  Xoxo.

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

Hi Preezy,

I am so sorry that you are going through this as well! I pray that your cone biopsy goes well and that they get clear margins. Please let me know if you have any questions about the surgery. If you ever need anyone to talk to please feel free to message me. 

My head was spinning a little this morning when the Dr. called me with the pathology results. I know in my case when I asked him about margins he said that it did not show that they had any margins. When he told me I would need a hysterectomy I asked him if I could keep my ovaries as I am scared to go into menopause and he told me that due to the adenocarcenoma that they would need to take my ovaries as well. However, I think that is all up in the air until I see the oncologist next Tuesday...and I am hoping that is just his opinion. I will let you know after my appointment.  

 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hello again!

Thank you for your quick response- I'm just not sure if you have adenocarcinoma in situ vs. invasive adenocarcinoma as they have different treatments all eventually leading to a simple vs. radical hysterectomy.  Clear margins really help drive that decision also if you're done with family planning.  I hope you gain some clarity and ease of mind at your next appointment!  This has definitely been a whirlwind and I hope you know you're not alone.

as for me, I'm anxiously awaiting my appointment with the gyn onc to perform the cone biopsy.  Did you have yours under general anesthesia?  What was the post op, how many days did you need to take off?  How was your pain?  Did you have a LEEP or cold knife?

I never thought I would be in this position but here we are, 2020 never ceases to amaze.  I'm hoping to save my fertility- I just want to have one child, and then they can take it all out! Fingers crossed for the both of us!

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

Hi Preezy,

Yes, I am beyond blessed to have my girls and to be done with family planning. I know in ways it is selfish to even want to hang on to my ovaries. It is just with things so stressful between the covid pandemic, employee turnover at our business, and helping the girls with virtual school...just this added weight of this diagnosis and being thrown into menopause is overwhelming. However, in perspective it is a small thing to worry about. 

The Cone Biopsy...other than obvious nerves going into it...was actually a really easy process. My appointment was scheduled for 11:30. They had me show up an hour early and with Covid restrictions in place I basically walked in and was immediatly placed in a room. They did the procedure under general anesthesia and they used a LEEP. I had some slight brown spotting and cramping after the procedure...with slight pain that was mostly noticeable when getting into and out of a chair only on the day of the procedure. However, by the next day I was fine and returned back to work as normal. About three days later I believe I started my period as it lines up to when I would normally expect it. My period was/is VERY heavy and is still ongoing now. I spoke to the Dr about this and he did say it was normal. 

Do you know how you will be having your procedure? I will be praying for you!! I will pray so hard that they are able to preserve your fertility and that they are able to get all of the abnormal cells in the procedure. 2020 sure has been a PITA of a year. Fingers crossed for both of us that things start looking up! 

 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hello dear-

I can understand why you'd want to hang on to your ovaries!  I think they remove them because there is like a 3% correlation between cervical and ovarian cancers so it's more for peace of mind.  Hopefully they offer some hormonal treatments to keep the affects of menopause at bay for you.  I'm praying for you as well.

I'm still awaiting my consultation with the gyn oncologist who will be performing the cone biopsy so hopefully very soon I'll have a date.  I just hope it can all be taken care of with this procedure, I feel like I'm racing against the clock here and I just want this all done so we can try to get pregnant.  How're you coping with stress?  I am trying to remain positive but my anxiety has been at an all time high.  I was joking with my husband that I literally never get sick, no colds, no flu, no allergies, nothing and here I am with AIS.  Life is funny.  

keep me posted xoxo

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

Hi Preezy,

I hope that you get your date soon. I know how hard the wait is. Do you have an appointment set up yet for your consulation?

I was so relieved when the oncologist that I was referred to only had a one week wait! I don't think my nerves would last waiting for weeks and weeks. I do not handle stress well...though I feel in some ways that I should be conditioned to handle it better at this point! The past 14 years with this business have been nothing but buckets of stress on a daily basis!

I called the Dr today and asked for a copy of my pathology report. I do not understand much of what it says though. My diagnosis was.

-High grade squamous intraepitherlial lesion (Cervical Intraepithelial NEoplasia-CIN3, Severe dysplasia) with gland involvement
-Endocervical Adenocarcinoma in SITU
-Both Endocervical and Ectocervical margins in this specimen are involved by lesion.

I will let you know what the oncologist says on Tuesday. Please keep me updated on your appointment and surgery date! I wish I could be more help with the stress of it all...but I am honestly not holding it all together well. I am just trying to stay busy until I know more answers.

Fingers crossed for us both.

xo

 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hi Krisea-

i hope all goes well with your appointment.  No date yet for the consultation or surgery, hopefully will hear something very soon.

so, your report is saying that your LEEP removed CIN3 and endocervical adenocarcinoma in situ (AIS)- which neither are cancer, both are precancerous.  However, the complication is that your margins weren't clear, it says the margins still have both the CIN3 and the AIS in them.  So you'll at the very least need another LEEP or cone biopsy to get clear margins.  As you are done with family planning, they'll recommend a hysterectomy.  From what I've read, they still have to do another cone biopsy because they have to decide whether you can get away with a simple hysterectomy vs a radical hysterectomy (uterus and ovaries).  So my hunch is the oncologist will perform a repeat cone biopsy and hopefully will get clear margins this time and then you will decide if you need simple vs radical hysterectomy.  
I just want to reiterate, based on your pathology report, you do not have cancer!  It doesn't say anything about invasive squamous cell carcinoma or invasive adenocarcinoma, everything appears to be in situ or in place for now.  Everything that's happening now is to prevent cancer.  I hope this gives you some ease of mind.  Let me know how it goes!  Xoxo

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

That is so good to know!!!! I heard carcinoma and hysterectomy and immediately thought that meant cancer. I will keep you updated on my appointment on Tuesday and please let me know once you have your dates. I am always here if you need to talk.

 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Krisea

Hi Preezy! I just wanted to give you an update for my visit with the oncologist. She did say that they could try a much deeper cone biopsy but since I'm not having anymore children that she would be more comfortable doing a hysterectomy. They are going to try to preserve my ovaries though if possible. So I guess they're taking everything including the fallopian tubes but no ovaries unless they find invasive cancer. I do need to see a colorectal doctor because she's worried that I either have anal cancer or I have endometriosis in my colon. I need to go for a scan on Friday to see if they can spot either. If I do have endometriosis in my colon she Said she would take the ovaries in that case as well. So fingers crossed everything goes well. My surgery is set up for November 18th

I'm praying that you are able to be seen soon! 🙏💕

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hi Krisea!

how're you feeling with all of this new information?  I'm glad you have a plan moving forward and I hope all works out and I hope your scans are clear.  Was the colorectal aspect unexpected or where you having symptoms?  
Im having my consultation with the oncologist tomorrow, hoping for the best.  Please keep me updated xoxo

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

Hi Preezy,

I hope your appointment went well today!! Let me know when you get your biopsy scheduled so that I can be sure to be praying hard for good results!!

I honestly have had a few hard days. Just overwhelmed with what they might find during surgery...and then also freaking out about our business and having to take time off. I am hoping that the surgery goes well and I can be back to work in a day or two. We had a huge amount of employee turnover during the pandemic..looong story...but we have ALL new employees...with our oldest having worked for us for just about 2 months now. So...it is just my husband and I who know how to run it all...and we each deal with different sides of the business. I deal with the big retailers and the business side while my husband handles the manufacturing side. I am frantically trying to record myself so that in case there is a complication someone can watch my recordings and hopefully deal with my side of the business. When you are dealing with large retailers...any error results in compliance fines so if things are not done 100% correctly we might lose large sums of money on a PO due to fines (fines can be 1,000's of dollars on a $25.00 PO so you are paying them for buying your product...it is rediculous what big companies can get away with). I am having a hard time sleeping at night thinking about it.

I am honestly so glad to be finally getting somewhere with the colorectal side of this. I have been dealing with rectal bleeding for 2 years...and IBS type symptoms for 11 years. I have had multiple colonoscopies and they keep telling me it is IBS and hemmheroids...but I know that there is something else going on. The amount of blood is like something out of a horror movie (and I am so sorry for the TMI). So on that side...I am looking forward to an answer because it has really impacted my quality of life.

 

I hope you are doing well. How are you handling the stress? Please please let me know how everything went today.

xoxo 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hi Krisea-

I wanted to give you an update.  I am scheduled for my cold knife cone biopsy on 11/19/20 under general anesthesia with a repeat ECC (endocervical curettage) which I was completely prepared for with my incessant amount of research. I'm hopeful that all will be resolved after this.  I'm keeping my fingers crossed. My oncologist suggested I take two weeks off from Work but I can't really swing that much time off before the holidays so I can probably do about 5 days off, she was more concerned with heavy lifting etc and knocking the clot loose but I don't do any of that kind of stuff so I'm hoping it'll be fine.

I can't imagine having to deal with a business during covid and now with all of your stress with your health, I hope you're taking time to breathe and self care.  I've been going on walks, trying to keep busy with work, going out to eat with friends as much as covid allows for, and snuggles from my husband really help too.  It's been tough managing the stress but I think having a plan moving forward has definitely quelled some of my anxiety.  I think your plan with the recordings is a great idea. 
I'm also glad that you're getting somewhere with the colorectal symptoms, 11 years of not knowing is a very long time!  I hope they can give you some answers.  When are your scans scheduled for?
You'll be having your surgery a day before I do!  I'll keep you in my thoughts and prayers and I hope all works itself out.  Xoxo

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

Hi Preezy

How did your come biopsy go? I hope you are feeling well! I had my hysterectomy yesterday...and just got home from the hospital a few hours ago. The doctor was able to save my ovaries and was optimistic about the surgery. I just need to wait on the pathology which I believe should be back before my next appointment on Tuesday. Crossing my fingers that they won't find any invasive cancer. 

I am in a bit of pain from the surgery...but it was not as bad as what I was expecting. The surgery was done roboticly and I just have three small (1") incensions and an incension through my belly button. As long as I keep up with my pain meds I feel pretty normal. My stomach is super swollen and bloated though and it aches when I get up and down or when I walk. However sitting or laying there is hardly any pain. 

I pray everything went well for you today! Please keep me updated. 💕

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

Hi Krisea-

just got my results back, negative margins and no invasive cancer!  My uterus is clear, my endocervix is clear, all of the adenocarcinoma in situ was on the surface of the cervix and it was all excised with the cone.  I feel like I can finally breathe and move on with life.  How're you doing post hysterectomy?  I'm praying for you.  Xoxo

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

Krisea

Hi Preezy,

What wonderful news!! I am beyond happy for you and wish you the very best going forward!

I also just recieved great news. My pathology came back and everything was just remnants that was left over from the cone biopsy with no ectocervical margins involved. I am actually happy that I did go forward with the hysterectomy as they did find adenomyosis as well as a region of fibrosis and paratubal cysts in my fallopian tubes. I used to get horrible pains in my stomach around my period and some pains near my ovaries...so I am hoping that these were the cause and I will no longer have those issues.

Wishing you the very best in your future!

 

4-17-19 - First abnormal Pap ASC-US

HPV mRNA e6/e7

5-22-19 Colopscopy - Normal

3-4-20 Abnormal Pap - ASC-US

9-11-20 Abnormal Pap - ASC-H with Abnormal Glandular Cells

9-25-20 Colposcopy - CIN II / CIN III

10-20-20 Cone Biopsy - Adenocarcinoma  and Squamous Cell carcinoma SITU

11-18-20 Hysterectomy

 

 

Preezy

That's great news.  Have a happy thanksgiving.  I hope you have a stress free holiday season!

-Preezy

31 years old, married, no kids, USA

9/30/20: first Pap smear in 10 years ASCUS; HPV 16+ and other HR HPV positive

10/22/20: colposcopy and ECC done; gyn Saw mild acetowhite changes, predicted CIN1; took 3 cervical biopsies, mentioned ectropion

10/26/20: cervical biopsy results: High grade endocervical glandular dysplasia (adenocarcinoma in Situ), ECC negative for changes but scant tissue was obtained

10/27/20: referral placed for gyn oncologist

11/4/20: consultation with gyn oncologist

11/19/20: cold knife cone biopsy and repeat ECC

11/23/30: adenocarcinoma in situ and LGSIL removed in cone biopsy, no invasive carcinoma, margins are clear, ECC clear, endocervical biopsy clear!!

More Information

Cervical cancer