Waiting on hysteroscopy

I am sorry you are going through this you have been through such a lot already but good news about all clear for 12 months They can do the hysteroscopy with anaesthetic  which would be less stressful for you I totally understand what you are saying I’ve had 3 and I did manage to shut myself down and get it over with but you have choices and I think with what you’ve already been through you need to use them I wish you all the very best 

Thanks for replying. Do u know what the blood test checks for before the hysteroscopy?

When I had blood test at that stage it was CA125 test, which helps to test for ovarian cancer rather than endometrial cancer. I was told not to worry if it was elevated as there could be other reasons….

Hi Mum45

Welcome to the Womb group. 

I am sorry to hear of your breast cancer but pleased to hear that you are all clear.

With tamoxifen there is a link with going on to develop endometrial hyperplasia. This is the thickened lining that has shown on your ultrasounds. It is normal that they stop the tamoxifen while they have a closer look. Because the tamoxifen is given as an anti oestrogen agent this can unfortunately mean that the lining can thicken. It does not necessarily mean that cancer is present but it needs ruling out. Hyperplasia can be different types and have different causes. Some need treatment. Some do not need treatment but are monitored. 

Tamoxifen can also mean a higher chance of developing the cysts. 

The only way to know for sure what is going on is the biopsy that will be done when you have the hysteroscopy. The hysteroscopy is the tiny camera and the biopsy is taken using suction and very thin straw like instruments. Most ladies are concerned about the procedure and it is never nice being told that you need investigations done. Some ladies ask about having it done under general anaesthetic whereas some ladies, like myself had the biopsy done in out patients. I did find it a bit uncomfortable at times but it was certainly not unbearable. I disliked the pushing sensation where the instrument was passed through the cervix but this took seconds. The actual biopsy just felt a bit like period cramps. I did lose a fair amount of blood and felt a bit washed out for 24 hours- but other than that I was fine. I was phoned by the nurse specialist who was going to do my biopsy the day before the procedure and she went through what would happen. This helped. I was advised to take paracetamol before the procedure and was told there was an option of gas and air if needed. I was assured that I could stop at any point if it became too much. 

It is normal to have a routine blood test. This will check the normal things like haemoglobin levels but also will look at CA125 levels. This is a marker that is most useful for ovarian cancer but is also looked at in endometrial cancer. A level under 35 is considered normal. It can go up and down for different reasons. So if it is slightly raised it may be due to the cysts. It is only a marker and does not diagnose or exclude cancer. 

My diagnosis came around a week later and I already had the CT scan. 

It is important to have this test so they can confirm what type of hyperplasia you have. One type would need no further treatment, may need the tamoxifen looking into and may resolve with time on its own. It may need repeat monitoring. There is another type that may in time have the potential to become a cancer- but has not yet- and for this type either monitoring or treatment would be advisable. For some ladies this could be the mirena coil. 

If cancer is present then for most ladies, where it is medically possible a hysterectomy is the first line treatment. For an early stage endometrial cancer this may be the only treatment needed. Early stage endometrial cancer IF it is diagnosed is normally a very treatable cancer. 

Good Luck. I hope that it can be done quickly for you. We are here in the meantime.

Jane

Hi Jane thanks for replying and giving me more genuine information on this because all ive been doing is googling and getting nowhere. I had a blood test just wondering where I can see my results from that? Hate the waiting especially when the bleeding has gone more heavier than it was. It was only a week tomorrow  since I saw the gynacologist but it feels like forever waiting for letter to come through. Obviously not looking forward to the hysteroscopy but just want to know what's going on

In my experience it is better to talk to people who have experienced the procedures rather than look on the internet for generic information that may or may not be accurate. 

The blood test result will likely go on your NHS app or you could contact GP surgery. In my experience with blood tests- and I have had many- they only contact you if something shows up. 

If the bleeding is getting heavier or you have anything else going on there is no harm in contacting your GP and mentioning it. If out of hours then NHS111. They can offer medication to reduce the bleeding but I was told that this could not be done until after the biopsy as it may affect the result. 

During my cancer journey any letters used to take around a week to arrive to my home whereas my GP got sent everything electronically and would receive things before me. You could look to see if any appointments show on your NHS app or contact GP to see if they have heard. GP will also be able to contact hospital directly to chase things up if needed. - Mine did. 

I know the waiting is hard but you should hear very soon. 

Jane

It was my oncologist what referred me so will results not go back to her ? Nothing on my NHS app. I was thinking of contacting my gynacology nurse for advice. Just glad I have got you all on here you have been really helpful thank you. 

Results should go back to the oncologist however mine were also sent to GP. Not sure if it is the case for everyone. 

Contacting CNS is a good idea

So sorry you're going through this. I don't know about the blood test but I was also worried before my hysteroscopy. They told me to take painkillers beforehand so I took Neuramol as they tend to be stronger. The hysteroscopy was very uncomfortable but I just kept repeating to myself "it's a means to an end, it's a means to an end" and I got through it. It's different for everyone though because I know someone who went for one not long after me and she just found it too painful and ended up waiting for an appointment where she could have formal pain relief. 

The doc took several biopsies during mine, because I'm pretty sure he knew it was cancer he just needed to make sure he got the right sample so they could find it, and I didn't actually find that too bad.

Never be afraid to talk through your worries about it and if you find you are really feeling anxious about it ask if there is a possibility to go straight to the formal anaesthetic option. I have never understood why women are expected to just push through procedures like this or even having a coil fitted. If it was men they would be demanding pain relief and we should be no different.

I've just contacted cns nurse my bloods came back and  ca125 is 18 which thankfully quite low. Just concerned as they taking biopsies too so they must be taking them for a reason? Like  you im going to try push through take some pain relief just want to get it over with!  Us ladies don't half go through it !!