Tell me everything you know about cervical cancer

Miscellaneous and Personal Stuff I Must Share
1

Because I need to know. I probably shouldn’t be sharing this here but someone has to draw the short straw and you guys got it.

On Wednesday Lady Chance was diagnosed with it. At first our GP told her that her pap smear showed some abnormal cells and she should make a GYN appointment. Scary, but still calm.

Come the appointment (I wasn’t there. Curiously, I was also at a doctor’s office getting my foot operated on (minor))(Not that I would be there normally) and her GYNs opening salvo was ‘It’s bad.’ She has cervical cancer and needs to schedule a biopsy. We’re woefully short of facts beyond that.

Here are the facts that we have:

  1. Her GP, who also performed the pap smear and pelvic that turned this up, says everything internally looks and feels normal.

  2. Her GYN is doing a cone biopsy, which I discover is called ‘conization’ on Tuesday. This would be six days after he told her and approximately 21 days after our GP said she sould make an appointment.

  3. Her GYN said the likely treatments were a cone biopsy (as above) or a hysterectomy.

  4. In discussing treatment options his first question was ‘Do you plan on having any more children?’ When told no (we’ve got two and we’re both 40) he said that was good as it meant he could make a LARGE cone cut on Tuesday. He also said that after treatment she’ll need smears every 3 months for several years to monitor things.

  5. He also said that, of the cells detected, there’s a range they normally see that goes from ‘concern’ to ‘monitor’ to ‘get moving on treatment’. She’s way off on the bad end of that scale.

From about a million online pages of reading since Wednesday I think, but don’t know that we’re talking about Stage 0 or Stage I (either A or B) as there appears to be no visible (according to ‘1’ above) lesions or readily detectable masses. Also, the treatment options he mentioned are indicated for those stages. If it was more advanced there’d be more hardcore and aggressive treatment options being discussed.

It also seems to me that the facts above indicate that, even if Tuesday is to be a biopsy to gather data, he’s planning to take enough out to potentially remove all the cancerous tissue right then and there. Am I right there?

But that doesn’t mean I can sleep at night. She can. But she’s always been the stronger of us. The more blase one. I’m the one scared out of my damn mind.

I’m not looking for sympathy here. Maybe reassurance. Stories from survivors or the partners of survivors (men, sound off!). Any doctors, realizing that I wouldn’t hold you to anything, should feel free to offer an analysis of the facts at hand. I sure don’t like that line on wikipedia about ‘With treatment, 80 to 90% of women with stage I cancer and 50 to 65% of those with stage II cancer are alive 5 years after diagnosis.’ While that may be trying to sound reassuring in my state that’s a 10-20% chance that she won’t make it to 45. (Though I think there’s more to those numbers than appears. That screams of weird variables to my math-sense.)

I’m 40. And she’s been the light of my life for more than half of those. 21 years now. And I knew I’d be trying to marry her about two weeks into dating. I think I could face a cancer of my own far easier and braver than hers. And dear God, what about the girls (seven and three)? The last several days of acting normally and such with them is some of the harder things I’ve ever had to do.

Part therapy, part support group, part cri de coeur, I suppose. Thanks for listening.

2

So sorry. Has she had a repeat pap to confirm?

3

Catch your breath!
The best news there is that her doctors are moving on this. Really,that is a good thing. The worst case scenairo would be waiting. The best thing for you to do is to read as much as you can about treatment options and take care of your health also. You have us to lean on. We are there to buoy you as much as we can.
{{{HUG}}}

4

All four of you are in my thoughts and prayers.

5

I have an aunt who went through something similar, but many many years ago, when she was in her late 20’s. She wound up having a hysterectomy, so perhaps her case was a bit more advanced (I don’t have all the details) or maybe it was a difference in how medicine was done back then. But the good news is that she is now in her 70’s with no recurrance. That’s a half century.

“Cancer” is a scary word, but caught early this one really is treatable and, dare I say it? - curable. As always, your mileage may vary, and this is truly serious, but a good outcome is a reasonable hope.

6

My daughter had to have a LEEP done at a very early age…before 18. She’s 25 now and fine. Her dysplasia was at the good end of the scale though. Her experience is why I’m urging all my nieces and daughters of friends to get vaccinated. She did find the procedure to be a bit uncomfortable, but other than that…I consider her lucky it was caught when it was, because she has no insurance now.

7

Amusing that the Google Ad says ‘Get more sleep’ or somesuch.

I managed to get about 1.5 hours last night and I’m in at work.

Thanks for the kind words. And again, if anyone has any tales to tell or insights to share I’d very much like to hear them.

8

I don’t know much about cervical cancer, but my sister just finished treatment for breast cancer…two little kids, under 40.

And about the second thing the doctor did for her, her husband and my mother was stuck them all on an anti-anxiety drug.

There are some points in life where “better living through pharmaceuticals” is a good catch phrase. This may be one of them for you. You’ll need to be able to sleep to function. Make an appointment with your doctor.

9

I haven’t had cervical cancer, but I did have a hysterectomy of the vaginal type due to repeated dysplasia results (after two LEEPS). I think it was the best thing I could have ever done for myself. So if the doctor is willing, and Lady Chance isn’t freaked out by the idea, maybe she should press the doctor for that option.

My warmest thoughts and good wishes for the whole Chance family.

10

A friend had cervical cancer detected while she was pregnant :eek:. They carved enough out of the cervix that they felt they had good, clear margins (i.e., it looked like they had gotten every bad cell with plenty of good cells along with 'em), then delivered the baby as soon as his lungs tested out mature. They did a combo c-section and hysterectomy to make sure they’d gotten all the bad stuff. Dunno if they’d have had to do the hysterectomy if they’d been able to carve more, earlier (they were limited in how much tissue they could take, due to the wish to preserve the pregnancy).

This was, hm… 8 years ago and my friend is still quite alive and healthy, thankyouvery much :slight_smile:

Very scary times though. Good wishes heading from the Zappa-Knig household to casa Chance.

11

I also seem to have developed pink eye this morning. So I have an appointment to get some drops for that. But I have GOT to discuss all the variables and such with this thing. For peace or panic of mind, at least.

12

Never sure what to say when these things happen, but will keep you and yours in my thoughts. You’ve always been so helpful and supportive, if you need anything please let us know.

13

“It’s bad” is about as scary a sentence to come out of a doctor’s mouth as I can think of. However, it’s all about context.

  • the doctor said everything looked and felt good, which means if there is cancer, it hasn’t gone past Stage I.

  • After a PAP smear comes back with abnormal cells, the next step is a colposcopy, which is a much more extensive scraping of the cervix, externally and internally. I had one last spring. It takes about an hour between putting one’s feet in the stirrups and taking them back out.

  • if the colposcopy finds evidence of dysplasia or outright cancer, then the doctor looks at how much and where. If there are only a few cells gone bad in a small area, then usually that area is frozen off or cauterized. Check ups follow every three months after that.

  • if the colposcopy shows more than just a few cells, that’s when the doctor starts looking at LEEP or conization, where a significantly larger chunk of the cervix is removed, both to get rid of any possible cancerous lesions and also to check the extent of the cancer, if it is present. The problem with both is that it significantly weakens the cervix, which means, your wife might not be able to carry another pregnancy to term (that’s why the doctor asked about future children).

  • if the cancer is more advanced and no longer limited to just the cervix, then they have to look at surgical removal of the affected organ, and they will most likely start talking about radiation and/or chemotherapy.

However, nothing is known until at least the colposcopy/conization is done and the pathologist can tell the GYN how much, where, and what kind.

If your wife has ever had Human Papilloma Virus (genital warts, but not the really noticeable kind), then she is at significantly higher risk. If she hasn’t, the chances that this is a false positive are higher. I haven’t been able to get anyone to say that cervical cancer ONLY happens with a HPV infection, but those are the indications in the literature I’ve read.

Good luck.

14

It seems like you might be like me: we want to know as much as possible about the topic at hand so we can fight it in our minds and prepare ourselves for whatever may happen, good or bad. Not for us the paternal “there, there, don’t worry your head about the details, I’ll take care of everything” doctor style that many intelligent people find reassuring. While many women decry the “What to Expect While You’re Expecting” series of pregnancy books because they have lots of scary minute-chance danger stories, I was comforted by reading them, knowing all that could go wrong and wasn’t, and knowing that if something were to happen, I wouldn’t have to learn about it intellectually and deal with it emotionally at the same time.

So. Ask your doctor. Ask her doctor. Print out your OP, add any other specific question you have, and schedule an appointment to talk. Don’t let him leave the room until you have all the answers you want - not about random groups of statistics, but about your wife and her specific case. (Of course he’ll need her permission to talk to you about it, legally.) If your wife would rather not be there to hear everything, that’s okay too. You guys are a team, not a two-headed monster. She needs to do and hear what it takes to keep her strong and as healthy as possible, and you need to do and hear what it takes to keep you as strong and as healthy as possible - for your sake, her sake and your kids’ sake. If she wants you to be the information-keeper, and she only wants to hear the short term plan and not all the what-ifs, then honor that.

From reassuring anecdote land, I had the abnormal PAP/colposcopy/cyrofreezy thing route that **phouka **mentions about 10 years ago, and no problems since. I also have one friend with diagnosed cervical cancer that’s been untreated (by her choice) for 15 years, and you wouldn’t know it to look at her. She’s a statistical outlier for sure and I wouldn’t recommend that course of (in)action. But it’s an interesting case to consider when one is overwhelmed with what might go wrong. It might also go right.

15

No advice that hasn’t been given.
Just sending positive thoughts to all the Chance’s.

16

That’s what I was thinking too, after a friend had one for her ovarian cancer.

How lucky she is to have you with her for this.

17

Just a few clarifications.
Colposcopy is not “a much more extensive scraping of the cervix, externally and internally”. Colposcopy is the act of looking at the cervix through a microscope. Where I work it takes about 15 minutes.The doctor may use iodine or acetic acid to make the abnormal cells stand out from the normal cells, or they may not. They may also do a LLETZ (large loop excision of the transformation zone) or a cone biopsy, or simple cautery of the abnormal cells. LLETZ, cone biopsy and cautery all aim to take away the abnormal cells.
The flow chart where I work goes -abnormal smear (CIN I-III or above)= colposcopy and LLETZ or cone biopsy. We do not repeat abnormal smears.

If CIN I-III and margins are clear the patient gets a smear in 6 months and if that is clear, annual smears for 5 years. If margins aren’t clear, they get a repeat excision of the transformation zone, then as above.

If it comes back as higher than CIN III (i.e. grade one neoplasia or above) then hysterectomy is usually the next step.

Cervical cancer is staged CLINICALLY. That means if they can’t see it or feel it, it is still stage 1. Stage 1 cervical cancer is still confined to the cervix, it has not spread to the uterus, vagina or pelvic wall.

Treatment for stage 1 cervical carcinoma is a hysterectomy with removal of the pelvic lymph notes and sometimes radiotherapy. Chemotherapy is sometimes used, but not usually. You get to keep you ovaries if you want them.

We may, however, be getting ahead of ourselves.

Smear tests do NOT diagnose cancer. They just don’t. All they can say is if the cells are normal or if there is dyskaryosis present and if the dyskaryosis is mild, moderate or severe.
Mild is roughly equivalent to CIN I
Moderate to CIN II
Severe to CIN III or above.

You have to look at the cervix to see what you can see- even CIN I can be visible using a colposcope. You remove (biopsy) the abnormal areas, and then by looking at these samples down a microscope you can determine if the abnormal cells are sitting on the surface of the tissues or have spread into the bottom layers of the tissue and whether the margins are clear or not. Then you can diagnose cancer.

Your GYN may need some training in people skills.
Merely by suggesting that they’re not sure whether a cone biopsy alone might be curative suggests to me that they are not 100% sure whether they are dealing with CIN III or a carcinoma proper.

Where I work, we don’t call anything other than full blown cervical neoplasms “cancer”. Even though, strictly speaking CIN I-III are neoplasms, we don’t call them cancers or pre-cancers. We use “abnormal cells”. If we tell someone that they have cervical cancer we mean proper, full-blown cancer that needs hysterectomy and/or radiotherapy.

Anyone who was cured by LEEP/LLETZ/cautery/cryotherapy/cone biopsy did not have cervical cancer, they had CIN.

So…don’t panic yet.

18

A few additional clarifications here:

Broadly, this is correct, except in certain rare cases (sometimes a Pap smear can detect adenocarcinoma of the endocervix or endometrium, and sometimes a high-grade squamous cell carcinoma of the ectocervix will produce what’s called a “tumor diathesis” that renders it diagnosable on Pap).

Where I practice, we use a two-tiered system:

  • Low-grade squamous intraepithelial lesion (LSIL) (corresponds to mild dysplasia, condyloma, CIN-I)
  • High-grade squamous intraepithelial lesion (HSIL) (corresponds to moderate or severe dysplasia, carcinoma in situ, CIN-II, CIN-III)

Based on the the description of the gynecologist’s plan, I’m assuming that the actual Pap diagnosis was HSIL. Often, gynecologists will perform a colposcopic biopsy in order to confirm the diagnosis (Pap smears do have a false positive chance, after all) before proceeding with a cervical conization, but not always.

The advantage of doing the cone straightaway is that you just have to deal with the one procedure, rather than having two (a diagnostic biopsy followed by a cone), and you have a good chance of excising all of the dysplastic tissue. Getting more tissue also results in a more complete pathologic examination of the lesion, so that if on the minuscule chance that there’s an invasive carcinoma there, you’ll be much more likely to catch it than on a small biopsy.

As you say, the vast majority of the time, HSIL/CIN-III/CIS can’t be distinguished from invasive carcinoma on a Pap smear.

Agreed.

19

No stories from this part of Maryland (well, this household, anyway). But I want you to know that you and your family will be in my thoughts!

Please do keep us posted.

20

I want to make sure that she has a second pap before colposcopy. I had an abnormal pap in my 20s and was sent for colposcopy. When I got there, I they couldn’t find anything to look at or treat (and since I had no insurance, I still had to pay $100 for the non-procedure at a time when I made only $5000 a year, but I digress) but they sent me back to the university for a second pap. The university (which also had announced to me that I probably had sexually transmitted diseases and made me get tested for syphillis, genital warts, and gonorrhea, none of which I had and which testing would not have been demanded had they checked the pap) did a second pap and found nothing. I checked every 6 months–nothing. Now I check every year–nothing. I’m not trying to say that everything is okay for your wife because it was for me, but that it’s good to have a confirmation of the diagnosis before surgical procedures are initiated.