Biopsy results at last but now I am confused

Hi Sparky55

I am sorry you are not getting the answers you need from your consultant. 

From my understanding- you could call the Support Line and speak to one of the nurses.

- the biopsy detected no cancer. Hyperplasia is a thickening in the lining and it can have different causes. Some hyperplasia will go on its own, some could in time become cancer and some may contain cancer. I am not sure what the secretary meant by no hyperplasia in the sample.

-when they do biopsies they normally take samples from different places. I know for me it was 10 samples. Although there can be a variation in thickness (some parts more than others) it would be unlikely to give a false negative. 

-after your hysterectomy everything that is removed will be examined in detail by pathology. This is routine whether or not the biopsy showed cancer. 

-I would think it is a combination of all of these reasons but it is hard to know without having full details. Family history of endometrial cancer in a first degree relative would increase the risk. I know this because it was discussed with my own consultant. Some cancers can have a link and raise the risk. Hyperplasia can come back and some types would be more concerning than others. 

Fibroids and polyps are different. Fibroids are benign tumours that can cause issues due to size and pressure. Polyps can sometimes be cancerous. 

In the first ultrasound when they thought there were multiple fibroids- could this perhaps be that the ultrasound is not as clear as the hysteroscopy- so could it have been what they thought were fibroids were actually polyps?

I do think you need to talk this through with your consultant. Its a big decision to make to decide whether to have the surgery. Could you email and ask for an appointment (even phone call) to discuss in detail what is planned. An alternative is to contact GP and ask to talk through the results with them and ask some advice. 

Jane

Thanks Jane

I know I only had one biopsy sample taken as I confirmed this with my consultant afterwards.

I agree I think my consultant's secretary is just fobbing me off and doesn't really understand what I'm asking. I also wondered whether the polyps and fibroids have been mixed up throughout.

I think I am going to have to ask again, just so I can understand things better. It's just she makes it so hard for me to speak to him. I know he is a busy man and I feel like I'm asking too many questions when I've already been told 'there is nothing wrong'. But I';ve got surgery in just a few days and I have so many unanswered questions.

Thanks

I had a biopsy done after post menopausal bleeding.  A polyp was discovered during the hysteroscopy.  The biopsy came back negative for cancer.  I decided to go ahead with surgery to remove a polyp.  The polyp was tested and came back positive for endometrial serous cancer.  If you have a polyp, the first surgery could be removing it and having it tested before going ahead with a hysterectomy if you prefer to avoid the bigger surgery. The polyp removal was done via sedation and was fairly quick surgery.  I was hoping to keep my uterus but in the end, omentum, ovaries and womb were removed by robotic laparoscopic surgery.

Thank you so much Jane and Didi for your responses. This forum and the Macmillan site in general has been amazingly supportive as I have struggled to understand what various things mean. I now feel a bit guilty for writing as I did not have a confirmed cancer but I think it is not until you start down this path you realise how close it can be for all of us. Finding a reliable source of information has been so helpful as according to Dr Google I should be dead by now. You gave me the confidence to reach out to my consultant and request a call ahead of surgery on Monday. I am so glad I did as he said to me he would prefer to answer any questions before Monday.

I am going to share what I was told in case it helps others in the future.

It turns out only one biopsy was taken but, that the 47mm thickening could be an error by the sonographer as they could have taken a measurement which included a polyp in it. I had no idea that was possible. I wish I had known this early on in my journey as I had been quite worried about this. In summary, they don't really know how thick it all really is until it is removed and fully analysed. Likewise the fibroids and polyps could be muddled up, although he thinks I probably do have both. But clearly the polyps are more of a potential problem.

He confirmed for me everything removed goes off for analysis. I guessed this, but am happy knowing for sure.

I am keeping my ovaries, as he advised that ovarian cancer and endometrial cancer are quite different and having one does not pre-dispose to the other. I am happy about this as I am not yet menopausal. He advised if cancer is found they can always go back in later and take them anyway. I think consultants sometimes just treat us like we are on a conveyor and I guess we are. There is no ill intent, but we need to advocate for ourselves and ask questions, which when you are dealing with uncertainty and stress is hard to do.

He explained the reason he recommends hysterectomy is I have had two stuck IUDs in the past and I have told him I do not want another. The bleeding has been extremely heavy and makes normal life almost impossible. He said there is no way to really stop this. At 47 I obviously do not want more children and with my family history of endometrial cancer it makes most sense in my circumstances to remove my womb. I am happy with this decision as the thought of multiple polyp removal surgeries in the future and multiple hysteroscopies, etc. is not worth it. It will be different for everyone though, for sure, depending on individual circumstances.

So, hysterectomy on Monday. I am nervous about the recovery process, especially when they gave me a booklet explaining the physical limitations post op! I was not happy where it said I need to consider no heavy gardening for the rest of my life?! I love gardening and so was dismayed to read this, but I think they may just mean no construction and lifting of heavy soil bags - well my husband usually does that anyway!

Thank you all again for your support.

Glad you got the answers you needed. 

I have not heard of anybody being told not to do heavy work for the rest of their lives after a hysterectomy.  I’ve been careful not to lift heavy things so far but my hysterectomy was in the fall. My plan is to get back to my gardening this spring.  That includes lifting bags of soil etc.  I will leave the really heavy bags to my son.

Am glad you have got some clarification now.

With physical limitations after the op I was told no heavy lifting, twisting or over doing it for 6 weeks. I was able to go for walks etc straightaway. I just paced myself and was fine. 

Jane