Newly diagnosed and scared.

Hi, I can totally understand your reactions, I was exactly the same. I was diagnosed with leiomyosarcoma which is a rare aggressive tissue cancer. I had had bleeding and bloating. After having an MRI & CT Scans I was told it was contained in my womb but I would need a hysterectomy to get rid. I had a full hysterectomy and they took my ovaries and tubes. My surgeon said after the surgery that my uterus was as large as a bell pepper but luckily she thinks it was contained. This was a week ago and I'm home now recovering. From being involved in the MDT meeting it was less than 2 weeks till I had my surgery. Please try and stay positive this forum is great there are some very knowledgeable people on here who can help you through such a frightening time. I really hope you get through outcome you want. Please keep us informed in how you get on.  Lots of Luck xxx

Hi, I was in the same position at the end of May. It was completely unexpected news. I was told after the hysteroscopy/biopsy it was type 1, not aggressive and this was what I held onto whilst waiting for a scan to predict the stage. From my experience, now coming out the other side, the waiting and not knowing is the worst. Keep reminding yourself the known piece is that it’s not aggressive and they think it’s stage 1/2 so caught early. I literally went around going ‘type 1, not aggressive’ in my head when the negative thoughts kept trying to creep in. The next few weeks won’t be easy, but you will get through them!

Thankyou for the reply. The only positive is that my ovaries and tubes are already gone so I don't have them to think about. My sensible head is saying that I've had the ultrasound and nothing else was flagged except in my womb and that the doctor said non aggressive so how can there have been such a quick change in a couple of weeks. My imagination is on a different level. 

I'm so glad you are out the other side from your op and you're recovering well. Long may it continue for you.

Forgot to add - when I was first diagnosed I also had several aches and pains (especially lower back) and I was convinced it had spread to my bones (it hadn’t). My brain was thinking all sorts with every feeling. Once I got the MRI results indicating early stage the pains went.

Thanks Vixxx.

Thanks for your reply and I hope you're doing ok.

I think I just got overwhelmed by the MRI because they can see anything and everything that's going on in there. Its all been so new to me. I haven't even needed to go to my GP for years prior to this. Hopefully my mind will be at rest when I've had the hysterectomy.

Hi Gigi1

Welcome to the Online Community and the Womb group.

I am sorry to hear of your diagnosis of endometrial cancer and I can remember how overwhelming it felt when I had my diagnosis. If you click on my name my profile will come up and it will give you an idea of my journey. 

You are not being a wuss. It is a really stressful time and I too felt at times I could hold it together and then it would all have to come out. I found with scans there is always that extra worry while you are waiting for the results. 

I also noticed some tenderness and some bloating after my scan and I wondered back then if that was partly due to the biopsy but also partly because I became aware of any slight sensations. I wondered whether the pressure of the cancer in my womb and the womb recognising that something was wrong- led to the sensations- also possibly pressure on lymph gland area in groin. Mine was found due to a bleed and I still wonder if it had been bleeding for a while and then when my womb couldn't hold it- thats when I had the big bleed. I know my womb was enlarged and that puts pressure on the whole area- which is sometimes why there can be changes with bowel, bladder etc. 

It's not long to wait now till Friday and I wonder whether you may get a phone call once it is done. That is what normally happened at my hospital. For me after the MDT I was called in for an appointment with the consultant - the next day- which was a Friday and then my hysterectomy was on the Monday. So once they have the full information, things can move forward quite quickly. Once you have that provisional stage and grade they can talk to you about the treatment and that can give you a bit more of a feeling of being in control. 

Here is a link to some info that you might find helpful.

Womb cancer booklet | Macmillan Cancer Support

In the mean time if talking things through would help then please do give the Support Line a call The details are below. And if there is anything else you need or want to know, please do ask. There's a lovely bunch of ladies on here who will want to offer support.

Jane

Thankyou for the reply Jane,

I have to say my stress levels have come down a little bit after reading the replies. I think you're all right, - it's the unknown. I hope that my hospital can get me in as quickly as yours did for you. The hysterectomy is the next milestone for me. Ironically when my last ovary were removed 10 years ago due to endometriosis and a cyst, I asked for a hysterectomy and the doctor said he didn't want to take away a healthy womb. Hindsight is a wonderful thing!

I'm also waiting for my hysterectomy date and have been really stressed. I have got way too far ahead of myself and was in danger of not hearing what I was being told in consultation as I'd already come up with my own disastrous predictions! I asked the nurse for one piece of advice I could take away and she said just focus on the next step. I wouldn't put myself in the strong category, just putting one foot in front of the other!

The waiting is just the worst. It's funny you should mention one step at a time as that's the same as has been said to me. I always said I didn't have much of an imagination but it seems to be working overtime at the moment. 

Let's just hope we both aren't waiting too long. Take care.

I'd just like to say to you ladies who are waiting for imminent hysterectomies, that I am 2 months off 77 and I had a radical hysterectomy for womb cancer  6 weeks ago, (2 nights as inpatient) and, to my surprise , have had a really good recovery. Admittedly I was lucky and had a keyhole surgery (womb, ovaries, tubes and cervix out) but I was out watering my garden plants on the 4th day, with very little discomfort at all and no  side effects so far... 

I know everyone can have different experiences, but I hope this  helps  a bit as I was really worried about having the surgery too.   Good luck to everyone.