Help! My head is reeling....

Hi, I am post menopausal, age 55. I had a D&C 2 weeks ago for spotting and a slightly thickened uterine lining. I just went for my pre op apt. today and was told that the pathology report said I have pre-cancerous cells - simple hyperplasia without atypia. She said there are 4 steps until it turns into cancer and I'm on step 1. I also had a polyp that has these pre-cancerous cells too. My doctor said the best thing would be to have a hysterectomy. She started telling me other options such as trying to reverse it with drugs and I sort of cut her off and told her I just wanted everything out. She referred me to another doctor for the hysterectomy since she doesn't do them anymore. I asked her if I should go to an oncologist gyn and she said no. I feel so confused. She said sometimes a d& c misses cancer because they don't get all the cells. So that must mean that there's still a chance I might have full blown cancer, so why wouldn't I need a cancer doctor? I'm just worried that this is the tip of the iceberg and maybe this is more serious than she's making it out to be. If these cells are pre-cancer then in my opinion, that's cancer. I just can't process all this information right now. It hit me like a ton of bricks. I'm so worried. Has anyone gotten this diagnosis and what did you do about it?

I'm sorry you're having to deal with this. Personally, I would definitely consult with a gyn/onc before surgery. They're the ones to see if there's a hint of cancer.

Hi Abby
Been there, done that. The worrying is the worst part. I also had a D&C and was told to do a hysterectomy. I just had my hysterectomy and it was the best thing I ever did. I was precancerous too and even tho my ovaries were fine, we took it all out. I am going for my 6 week checkup on Saturday and dont expect any surprises. They took everything out, so now I dont have to worry. I did have a gyn oncologist present at the hyst. - he confirmed that my lymph nodes etc. were fine. I felt better but it was also suggested by my gyn to have him there. You must have confidence in your doctor and as far as the anticipation - it is worse than the operation. Try deep breathing and listening to soothing music - keep your mind clear - it will soon be over and all will be well. Keep in touch.

First off, Take a deep breath and try to relax. I can understand how scared you must be right now. HUGS. To set your mind at ease, I would ask for a referral to a gyn/onc who may be able to better tell you what your options may be. Also, You might consider having your path sent to another lab to verify the current results. There is always a chance that somethings can be missed, but in most cases, it is a small or neglible chance. Pre-cancer is just that, pre cancer. At a step one means it has not developed to a point where it could even be considered close to cancer. That is good news. I hope that for you, you never have to deal with cancer, as its a club that no one who has been through it wants anyone else to join. Good luck and keep in touch! Jenn

Deep breath time. I would definitely talk to a gyn/onc. My ob/gyn doesn't think there is any real chance of me having cancer, but he is still conferring with a gyn/onc and having him on standby the day of my surgery just in case. If your tests are coming back pre-cancerous, I know I would want to make sure I had the right doc looking at it.

I had a lavh because I had precancerous cells in the cervix. I previously had a cone biopsy which often removes precancerous cells in the cervix, but the scraping of cells after the cone biopsy was insufficient so they couldn't tell if they got it all. I then had a hysterectomy and the pathology report showed no cancer and no precancer in my uterus or cervix. In other words, the cone biopsy had actually gotten all the precancerous cells from the cervix. So sometimes I wonder if I actually needed the hysterectomy, but I have decided not to second guess it too much. There is a sense of relief for sure that the uterus and cervix are out. I kept my ovaries. This is not exactly comparable to your situation because I believe you said it was precancer of the uterus and a polyp. My advice (like the others above): get a second opinion from a gyn who specializes in oncology and have another pathologist (laboratory) look at your slides. You are not slighting your doctor or the pathologist at the laboratory who first reviewed your slides. The more you learn from specialists, the more empowered you may feel. Try not to be overwhelmed. I think when we hear "cancer", even if it is "precancer", we assume the worst. I find the National Cancer Institute and the National Institute of Health to be reliable sources. Hang in there.

I also had simple hyperplasia without atypica. It's a benign condition, which is why you have not been referred to a gyn/oncologist. You most likely do not have cancer.

The "bad news" is that yes, this condition can turn into cancer if left untreated. The "good news", however -- and this is very good news indeed -- is that a) simple hyperplasia without atypica (like you have) very seldom progresses to cancer, and b) it can often be successfully treated (and reversed) when it's in this stage! And sometimes it just goes away on its own without any treatment at all.

This is just my opinion of course, but if you have the option of attempting to reverse this with drug therapy rather than lose your uterus, I would try the drug therapy first. You can always continue to have the hyperplasia watched and if it continues to progress, you can deal with it at that time. This isn't the sort of thing which turns into cancer in a few weeks or months.

When I was diagnosed with hyperplasia, my doctor told me that that diagnosis would not have been enough to warrant a hysterectomy. She gave me the diagnosis almost as an afterthought, saying that at this stage, there was about a 1% chance that the condition would ever get to the point where it was cancer. She also said that my weight was probably a factor and if I wasn't already having a hysterectomy (for fibroids) she'd probably just suggest that I lose weight.... it can be that easy to reverse the problem. I'm overweight, and hyperplasia tends to happen more to overweight women around the years of menopause.

This is probably why your doctor suggested the drug therapy first.

I think it would be an excellent idea if you got a second opinion -- which we actually suggest *any* time you're considering surgery, not just for a hysterectomy. See what another doctor recommends. Unless your situation is an emergency -- and it sounds like yours isn't -- you have time to make this decision.

My best to you, no matter what you decide. Hope this helps.

Thanks for all your replies and support. I have an appointment Tuesday of next week with the doctor I was referred to for the hysterectomy and I'm hoping to get more answers from him. I spoke to him briefly on the phone last night and he said that hyperplasia takes years to develop. This doesn't make sense to me because last year I had every test under the sun for a problem I had with my fallopian tube. In any case, all the test results were negative. My endometrial biopsy was negative. My lining was thin. My CA125 was negative, and there was no sign of any pre cancer or cancer anywhere. That was 1 year ago. So how does a condition develop in me in just one year that normally takes years as this doctor said. Also, the first sign of spotting that I had was in January of this year. That was only 3 months after I had surgery last year for an infected fallopian tube. If spotting is a sign for hyperplasia, then that would mean that I developed hyperplasia between last august when I had the endo biopsy and this past january. That's only 5 months. None of this makes any sense to me. Is it possible that the pathology report is wrong and I really don't have hyperplasia? Some of you suggested to have the biopsy looked at by another lab. How do I go about doing that? Are you suggesting I get the cells from the hospital and bring them somewhere else? I'm really clueless about these things. Any help would be greatly appreciated.

Hi, I was just wondering what stage your pre-cancer was that your doctor had a gyn-onc there?

Hyperplasia is NOT cancer. It is a pre-cancerous condition that could turn into cancer in situ. Hyperplasia is caused by abnormal cell division. It's characteristics include abnormal cell shape, nucleus (which have abnormal # of chromosomes/mutated chromosomes).

Cells go through cycles. All cells have the ability to self-destruct when it detects it is dividing improperly (has genetic mutations in DNA). Hyperplasia develops when the cells lose this ability (for whatever reason) to self-destruct, or they get stuck in uncontrolled cell division.

When a cell loses the ability to self-destruct and has mutated DNA, the cell keeps replicating the mutated DNA. It takes millions of these mutated cells to form cancer in situ. Cancer in situ is also marked by it's own blood supply, whereas hyperplasia is not. However, at anytime during the process of mutation, the cell can regain it's ability to self-destruct (it hasn't yet developed it's own blood supply). This is why hyperplasia can reverse itself.

When we get a period every month, we slough off the cells of the endometrial lining. Obviously then, we must make new cells to replace the ones lost. This is how hyperplasia is also able to reverse itself.

It is important to remember that while hyperplasia is NOT cancer, it still has the ability to turn into cancer through uncontrolled cell division and mutation. This can take many years to develop. It is possible that you developed your hyperplasia in a short amount of time. It is also possible that your cells will correct themselves in a short amount of time.

I hope this info helps you. Please seek a second opinion and do as much research as you can. Personally, I worry over everything, so I would op for the hyster. In reality, a hyster is really not indicated for hyperplasia alone.

Good luck to you