Confused and Scared

Hi Kelly, welcome to the forum where hopefully you will find plenty of support.  What you are going through at the moment is one of the worst bits of this journey, the not knowing. Fear of the unknown plays havoc with our minds and we just veer about from being worried to being Very worried.

So you’ve had a biopsy. The results from this tell the docs if there are any abnormal cells present, and if so how much different they are from normal cells giving them a Grade.  A multidisciplinary team, MDT, will then decide on a plan of action.  An MRI gives them a chance to see things more clearly than an ultrasound, but they don’t know the stage of any cancer until it has been removed ( via hysterectomy) and been examined in the path labs.  Sometimes ,I think,  they will say what they think it is but not confirmed until the histology results come back, which is about three weeks after the op, so more very anxious waiting time. The Stage tells them how contained the cancer is.

I am 69 and was diagnosed last July, after very slight spotting after menopause.  I only had an vagina ultrasound and biopsy and then had my op, no other scans. I was Grade 1 Stage 1b, ( the cancer had grown more than 50% through the muscle in the wall of the womb) so I was advised to have three sessions of brachytherapy. I am now on 3 monthly checks. Have you heard any results from your biopsy yet? It was at this stage I was told they had found cancer cells and started on the roller coaster ride. I thought I had polyps. At this point I was given a support nurse ( CNS) who I can contact at any time and who chases things up if I haven’t heard from anyone, but not all hospitals seem to offer this invaluable support. Of course everything is getting delayed because of the Covid situation. 

If they do detect anything nasty things start to move along pretty quickly, so sit tight and try not too worry yourself sick, but we all do that anyway.  Fingers crossed for you, good luck

Viv

Hi Welcome to our little corner of the Online Community. We've some lovely supportive ladies here on this forum and we all know what you're going through as we've either finished, in the middle of or just starting what can only be described as a rollercoaster ride.

I agree totally with what Jigsaw33 (Viv) has written. We started our journey roughly the same time and had the same treatments. The not knowing, waiting and worrying is by far the worst part but I found coming on this forum and talking over my worries with the ladies here helped no end. My hubby of over 40 years was no use, he has the empathy of a plank! 

I found the Macmillan Guide Understanding Endometrial (Womb) Cancer booklet was invaluable in my journey - you can download it here by clicking Womb cancer booklet. Try not to read Dr Google - that makes things worse.

Sending you welcoming hugs, B xx 

Hi KellyVA,

Welcome to this warm, supportive group, I am sorry that you have found yourself here. I was diagnosed last March it all happened very quickly, 2 weeks from first symptom to surgery. 

Although you have had an efficient service being seen and having diagnostic tests, sounds like the communication hasn’t been up to scratch so no wonder you are feeling confused. Have you been able to contact the secretary for the consultant that you are under? I have always found them to be really helpful, informative and understand that information is important to us all.

I had some anxious times waiting for results, surgery, more waiting for results, recovery, more tests more waiting, you get the idea. Almost a year on I have just had the result of a MRI which is all normal, I will see my lovely consultant next month for a follow up, then celebrate one year post op anniversary. 

During the tough times I found this group, MacMillan helpline, Samaritans (24/7) and counselling telephone service provided by my employer helpful.

I hope that you get the all clear with your results, please let us know.

Sending you all good wishes.

Honey

Thank you to all 3 of you. 

No, I haven't had my results of the biopsy as yet. I think this is what has made me panic. As everything I have read says that once they believe/know you have cancer then they send you for a MRI as part of deciding the treatment plan. 

It's just the not knowing.

I double checked my letter from consultant which mentions the 2 areas of 'Interest' incase I missed something regarding the cyst on my Ovary - It says Small 1cm Simple Possibly follicular cyst with no suspicious features. And then the 13.8cm lining. (I am sure they mistyped cms instead of mm). This was pre hysteroscopy & Biopsy. I've had no communication since. 

I have sent a request to my GP for more information and On the letter I mentioned there is the secretary telephone number, so I will give her a call in the morning.

Many thanks and love to you all. 

Hi Kelly,

I tried to reply yesterday then lost the message!!! (We have had computer problems)

I would think with your history (ectopic pregnancy, etc) they are just double checking with a MRI.  I had a similar thing. I had been diagnosed with cancer, and had the scans, but then the consultant called me in. Some 40 years earlier I had an operation on the neck of my womb. My two children that I carried were stitched into the womb, as two others literally dropped out. She wanted to know all about this, as I suppose the womb neck looked a mess. She said' I  don't want any nasty surprises when I am in there.' I think the MRI had shown a mess, and she didn't know what it was.

All the best, xxxx

Hi KellyVA. Just to say - don't assume anything.  I had endometrial cancer but I didn't have an MRI.  So it may be something else that they are looking for.  I had my treatment (surgery) in late 2017 at age 56 and I am fine now.  I did have a cyst on one ovary years ago, it was found during an ultrasound. I had to go back for a repeat ultrasound some weeks later and at that point it had gone away. It's all a mystery to me. If you want to look for information online I suggest using MacMillan, The Eve Appeal, Cancer Research UK for example.  Bear in mind that there are some strange people out there who like to dramatise their stories or just post scary stuff. I read lots of scary things when I was first researching my condition but eventually I reached a point where I thought: all this stuff can't be right, surely.  So stick to the reputable sites and don't be frightened.  Wishing you lots of luck.