In a spin

Hi there. I’m sorry that you had to find yourself here but like to offer you a warm welcome to the Online Community. I am also very sorry to hear about your Womb Cancer diagnosis.

A cancer diagnosis will bring many questions, lots of confusion and stress but I found being able to talk with other people who are on the same type of journey helped me a lot. The Online Community is organised into dedicated support groups and I am pleased to see you have joined our Womb (uterus) cancer forum. This is a good place to find ladies in a similar situation who will understand your fears and anxieties. Read some of the posts and then introduce yourself by putting up a ‘New Thread’ or just join in with existing discussions by clicking on 'reply'. 

When you have a minute, it would be helpful if you could pop something about your  journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. (It also means that you don't have to keep repeating yourself.) To do this click on your username and then select 'Profile'. You can update it at any time and if you're not sure what you should write have a quick look at mine by clicking on my username.

Things seem to move quickly in my opinion. A Multi Discipline Meeting (MDT) consisting of surgeons, anaesthetists, Clinician Nurse Specialists (CNS) theatre, staff will get together and interpret your scans. Depending where you are in the country they get you in quickly (My meeting with consultant to having op was less than 4 weeks and that was done across counties).

I found the Macmillan Guide Understanding Endometrial (Womb) Cancer booklet was invaluable in my journey - you can download it here Womb cancer booklet.

I can totally understand your anxiety and being in a spin. This is such a rollercoaster ride but we have all experienced the same emotions so we know where you're coming from so if you've more questions, feel free to do ask . Now is the time to batch cook meals for the freezer and buy some Bridget Jones knickers and put together a few things in an overnight bag. Some us got called in as a result of a cancellation so be prepared.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section. 

Sending you welcoming hugs, B xx

Thank you so much for the info and the warm welcome. I'm new to all of this. I will update my info and research the links you have suggested.

Bridget Jonrs pants on order!!!

Hi

It was 7 weeks from my first telephone call with doctor till my operation. Blood test at surgery 3 days after call, then ultrasound then referral to gynaecologist/ oncologist... then CT scan, MRI and then a multi disciplinary team meeting (MDT) then they will have you in to discuss full results and the plan they have for you. The scans had gaps of between 7 and 10 days...I think there is a 2 week pathway they have to follow....

Try not to rush ahead with what if , deal with today and your next appt, focus on what you can do now as that’s what is in your control....it is a huge amount of info you need to take on board in the next weeks so break it down into chunks which are manageable.... target your information gathering to credible and up to date sites ...general googling is not a good idea as a lot of it is old and will blow your mind.

I always took my husband to the appts, even though it said not too...sometimes he has to wait outside until they call me in but all the consultants encouraged his attendance, he was a second pair of ears and took took notes.... I made lists of things I wanted to ask and they will be brutally honest if you ask them to be... a specialist cancer nurse will be allocated to you and you usually have a session with her after your MDT meeting to make sure you understand everything and talk you through the next stages.

What ever your treatment plan will be there are wonderful ladies on here who have been there ,done it and will virtually wrap you in a cotton wool blanket . That’s what they did for me and I am forever grateful.

I was suspected ovarian cancer with a large pelvic mass, had total hysterectomy on Dec 17, didn’t take lymph nodes as looked fine. It was ovarian cancer  grade 1 C , early stage and was advised to take 6 sessions of chemotherapy to mop up / insurance policy against any rogue cells. I had my first session yesterday.

So whatever happens in the next weeks you will be able to handle it, don’t overthink..do practical things around your home to make your recovery easier, and we will all be invested in you and be looking out to see if we can answer your questions.

I went through a period when I found it hard to share, got very emotional, couldn’t even say the word cancer.. so take your time about who you want to tell and when... that’s what you can control...if you have a husband/partner they are in it with you so it’s important to fully include them as they will take the lead from you...

Take care 

Sue

Thank you so much for your really valuable advice and support Sue.  I really didn't expect anything to come of my mentioning to my GP that I had a bit of post menopausal bleeding and here I am two weeks later suddenly about to have surgery to remove my womb. I have to say the NHS are bloody brilliant and have got in there super quick and caught this thing early. Hopefully everything is contained within my womb and will be done with after my hysterectomy. Whatever happens I will take your advise and just take each day at a time.  It seems that I will have an idea of a plan by the end of next week as my scans are this weekend.

I hope your chemo goes well Sue. I really can't thank you enough for taking the time to write to me and help put my mind at ease.  Good luck with your recovery. xx

Hi Sharp,

Sorry you have had to join us. I am 3 years post hysterectomy, and can't honestly remember how long it was between diagnosis and operation!!! I do remember being given a date, then called on a Friday, 2 weeks early to go for a pre- op. They wanted to operate the following Tuesday. I think they had a free slot. It was then changed while I was at the hospital because they had an emergency. I would have a bag packed as I was in a flat spin, with no decent nightie, no pads, nothing!!! Just be prepared for anything!

I'll add I was Grade 2 Stage 1A, so early stages, too. I needed no other treatment. I was 72 at the time, had keyhole surgery. and recovered well. It was far less painful than childbirth, and I was amazed at all  the modern tests and equipment. I even found hospital meals much improved since I was last in hospital 30 years previously. You'll be fine. xxxx

Hi Sharp21 - so sorry to hear you are all in a spin. I think the place you are on this pathway is the hardest, waiting and not knowing. I am 4 weeks post surgery now and I can tell you that getting that date helped me enormously. For me it took 2 months from the first scan to the surgery. You are already at the MRI stage, which is the last information they need for the MDT meeting I believe, so it should be a lot quicker than that. In my hospital, the MDT meeting is once a week. Mine was on December 24th and I had surgery on January 20th. It took a little bit longer than usual because of the pandemic, but those numbers are dropping fast and so it shouldn’t affect you. I was in a terrible spin like you during the wait. I phoned my specialist nurses several times and they were very helpful. Do phone them if you have a number. That is what they are for. ‘Very early stages’ sounds good. Fingers crossed for you. Keep posting. J x

Hi . I was exactly the same, just a couple of pinky spots a couple of days apart on my undies. I didn't think it was worth mentioning to my GP but my bestie nagged and nagged. Once I had my telephone call with my GP things started rolling. I was rather naïve thinking the 2 week wait pathway meant 2 weeks from referral to op. Whereas it seems 2 weeks from appointment/test to result to next test etc. I think we all agree on here the worst part is the waiting and worrying but we're all hear to share your concerns.

Hope your scans go well this weekend, sending big hugs, Bxx 

Hi sorry about your diagnosis so my journey was diagnosed the 2nd November mri day later op on the 30th of November histology results 3 weeks later that confirmed same stage as mri xxx