Hi all I’m new on here- I hope you are all good as can be. Five weeks ago I had a hysteroscopy due to heavy periods and the doctor wasn’t concerned at all in fact, he was that confident he wrote to me two weeks later stating Lisa’s hysteroscopy looked fine and even if the pipell biopsy comes back inadequate I am happy to discharge her. Well 4 weeks and 5 days later he phoned me up to say he can’t believe it and that it has come back as cancer and I need an hysteroscopy asap. He also made a few comments which has worried me like unless it’s another cancer - but at the time your in shock because of the phone call- so many questions the next day but it’s bank holiday and I can’t get hold of anyone. My hysteroscopy is Tuesday at 9oclock- I just do not know what to think- is it wrong? Have I got cancer? It’s driving me insane. Also a year and a half ago I had a cancer scare with my ca 125 test coming back 112 and an urgent referral- but all they did there was ask if I was on my period at the time of my test- felt my stomach and did an internal- they said I’m fine and nothing to worry about- have they missed it? I’m full of worry and questions- I’ve wrote them down for Tuesday but I suppose the main one is have I got cancer? After a glowing report- oh I don’t know xx any advice I’m greatful xx
Love to all,
Lisa
Hi Lisa
Welcome to the Online Community.
I am sorry to hear that your biopsy came back as cancer and I understand your confusion and worry around this.
It is hard to know exactly what is going on with what you have put but it seems like the bleeding meant you needed further investigation. They had a look with the little camera (hysteroscopy) and your endometrial lining looked ok but when they did the pipelle biopsy (where they use the little straw things to take endometrial samples) they found cancer.
A hysteroscopy can not diagnose or rule out cancer. Only a biopsy can do this.
I am not sure why they would want to do another hysteroscopy if a biopsy has found cancer- unless they are trying to pin point exactly where the cancer originates or just want a clearer picture. Or possibly they want to repeat the biopsy. I am not sure why they would do this.
The normal thing to happen if endometrial cancer is diagnosed by a pipelle biopsy is to have CT or MRI scan to stage the cancer and then the first line treatment is normally a hysterectomy.
The CA125 test is a routine blood test that they do where there are symptoms where they are trying to rule out cancer. However it is not in itself a diagnostic tool. Anything under 35 is considered normal. A CA125 can be raised for different reasons eg; infections but it needs investigating. The CA125 is most commonly used where there is concerns about ovarian cancer but it is often used in endometrial cancer as an additional marker. It sounds like previously yours was raised but they checked you and you were fine at that time.
I can understand the confusion and it is hard when it is the bank holiday weekend as well. Have you got anything written in your NHS app? Reading what you have put here, it sounds like when they checked you for bleeding they felt confident that there was nothing amiss and were going to discharge you because all looked good. However unfortunately when the biopsy results came back from the lab they did find some cancer cells. This can sometimes happen. Endometrial cancer when caught early is normally a very treatable cancer.
Writing a list of questions for Tuesday sounds a good plan.
This link takes you to the Womb cancer forum which may be a good place to post any questions and get support.
Womb cancer forum | Macmillan Online Community
We also have the Support Line that you are welcome to call if you feel like talking things through would help.
Jane
Hi Lisa
I can understand why you are confused and it is frustrating when it is not clear. It is hard when you get told that cancer has been found and it can be hard to take in what is being said. Hopefully on Tuesday you will have a much clearer picture.
From what you have put on here;
The doctor who did your hysteroscopy/pipelle biopsy thought that your endometrium looked normal and did not think any cancer would be present. He was not worried if he had not got enough samples as he thought it would come back clear. He didn't expect there to be a problem so was going to discharge you. He sent the letter at this point.
However unfortunately when the biopsy results came back later, they showed cancer cells were present in the endometrium. He was surprised at this and had expected you to be clear. He phoned you when he had this result. When he wrote the letter he did not have the biopsy results. It is the biopsy result that confirmed cancer. A hysteroscopy is just a look inside with a camera. it can not confirm or rule out cancer. You need to go from what was said on the phone call as this is the latest update.
So normally what I would expect, and what happened with me, was a phone call to say that cancer had been found and I would need a hysterectomy asap and that I would be having an appointment to discuss this. I would also expect to have a CT/MRI to see exactly where the cancer was. So whether it was just in one area or had spread at all.
I have not heard of someone where they have found cancer cells already to be given a second hysteroscopy. It may well be that in some cases this happens but it is not something I have come across.
With the comments about another cancer- I am not sure what he is talking about however it would be normal, on diagnosing a cancer to look at where the cancer started and whether it has spread at all.- Staging. This is what the scans would normally be for. Endometrial cancer can sometimes spread out of the womb and in theory other cancer could spread into the womb, although I believe this is rarer. Without knowing exactly what he said, it is difficult to know.
With your CA125 levels of 18 months ago, it sounds like they checked you over and could not find any cause for concern, so I would not expect this to be related to the bleeding- unless there is something that has not been mentioned. CA125 can be raised for different reasons and not necessarily mean cancer. A higher than normal level would indicate the need to be seen and examined and you were.
So from what you have said unfortunately there is cancer and it was found when they took the biopsy from your womb lining. They do seem to want more details on this. I would expect on Tuesday for you to be given plenty of opportunity to go through this all and ask questions.
It is hard to know anymore from just what you have said on here. But I would go on the phone call information rather than the letter which was issued before any firm results came back.
Why not give the Support Line a call tomorrow and talk it through.
Jane
the macmillan support line is there from 8am-8pm everyday.
Good luck for tomorrow
Hi Lisa
The nurses and consultant sound lovely. I hope that the results come back really quickly.
I have not heard of this happening before and it may be worth thinking about contacting PALS at some point. However I would focus on first on recovering from todays hysteroscopy and waiting for the results to come back.
Crossing everything for you!
What is PALS (Patient Advice and Liaison Service)? - NHS
I hope the pain settles- I was told to take paracetamol but needed a quite afternoon to rest after mine. Hot water bottle helped me.
Jane
