Diagnosed recently

Hello Sara

Welcome to the Online Community. I hope that you will find it a supportive and informative place to be as I have. 

I am sorry to hear that you have been diagnosed with uterine cancer and understand what a worrying time it is. My diagnosis was in March 2022. I remember feeling all over the place, sometimes ok, sometimes scared. There is no right or wrong way to feel at these times and I just tried to go with the flow, accept that there would be some more challenging times and to reach out for support when I needed it. There are many lovely ladies on this forum who have been where you are right now and will understand how you are feeling. I see that you are due to see your doctor tomorrow and I personally felt a lot better once I knew exactly what I was dealing with and what I had to do in terms of treatment. At the moment I expect it all feels a bit up in the air for you. 

Please feel free to click on my name to see my profile. I also had bleeding as a first symptom. That lead to ultrasounds and then the biopsy. I also had a CT scan. I didn't have an MRI but there does seem to be a little variance between different hospitals. The results of the scans should give them an indication of what treatment to offer you. It is usually a hysterectomy and sometimes this may need to be followed up by further treatment. My hysterectomy was in April last year and I found it fairly straightforward, I recovered well and did not experience much discomfort. I was sort of just glad it was being done. My hysterectomy took place 4 weeks exactly from the time of my first bleed.

I am going to pop a link below to a booklet I found helpful and it may help you to have a look before your appointment tomorrow so you can get an idea of any questions you might want to ask. I actually made a list of questions to ask my doctor as I tend to find my mind can go blank in these circumstances. 

Womb cancer booklet | Macmillan Cancer Support

I hope that your appointment goes well tomorrow and if there is anything else you would like to ask please do so. Please let us know how you get on.

In the meantime there is also the Support Line (number is below) and they are there from 8am-8pm if you feel talking things through would help you. 

Hope this helps a bit

Jane

Thank you Jane for your helpful response. I looked at your profile and I can see you have been through a lot. I really am sorry you have had to go through this.

For me the cancer is thought to be stage 1 (from MRI and CT scans) and a hysterectomy should be sufficient. They are planning to test the lymph nodes in case there is anything the scans did not pick up and I need further treatment.

My biggest challenge is that I suffer from high blood pressure and this goes through the roof in a medical environment. I was told unless the BP is under control, they can’t proceed. I am booked in for 23^rd August.  

I will try to get a GP appointment tomorrow to see what other medication options are available. I am already on an ACE inhibitor which is not bringing it down.

Take care.

Sara

Hi Sara

I was worried about my blood pressure as well. Mine always goes sky high when I am in any medical situation. I had to take mine at home before attending the hospital each time I had treatment. It was high on the day of the surgery but not abnormally high. By the time I had been through all the treatments I was so used to having it done that it came out as normal. I couldn't believe it. 

It's a good idea to ask your GP about other options if the ACE inhibitor isn't helping. There seems to be a lot of different meds that are available. Do you have a monitor at home? I had to log my readings twice a day and that helped. On chemo days they were happy with the home reading. 

Good Luck for the 23rd-and if there is anything else that you want to ask please do so.

Jane

Hi Sara, I'm very much in the same boat. There was no mention of anything sinister when I had the ultrasound or even the hysteroscopy - it was all just procedure and checking stuff out. I even rescheduled some appointments as I didn't think it was anything to even slightly worry about. When I asked if I even needed a hysteroscopy or the polyp removing I was told, it was best cause they can cause bleeding later. No mention of the C word. So like you I was in shock too when I got the diagnosis. And like yo I'm luckily stage 1 and booked in for a hysterectomy on the 29th. I don't really have any useful advice other than to let you know that you're not alone! Best luck with the operation and keep us updated.

There was no mention of cancer during my preliminary tests including hysteroscopy and polyp removal. Then just before the NewYear 2022 I was called in for an MRI though even then cancer wasn’t mentioned… when I was asked to attend a gynaecologist consultation on 11 January is when the news was given. It was a shock. Apparently according to my gynaecologist plenty of polyps are not cancerous. 

Hi Robotxxx,

Thank you for your response. It's nice to know I am not alone although I would not wish this situation on anyone else. Unfortunately my circumstances have now changed.  

So far I have gone through the assessments via private medical insurance (AXA PPP) provided by my employer. The insurance company told me on Friday that they will not cover any of the cost of the procedure (robotic) because it is not on their list of approved surgeries.  This is despite the recommendation from my consultant stating that with the traditional surgery there would likely be a 30-40% chance of post operative complications due to my medical conditions.

So now I have transferred to the NHS waiting list which is likely to be 4-8 weeks. This will be the same robotic surgery the insurance company won’t pay for. At the moment I'm feeling somewhat lost. I guess I'll feel better once I get a date for the surgery. It's horrible to be walking around with something sinister lurking inside. 

Good luck for the 29th. Keep us posted on how you get on. :-)

Thanks,

Sara

Oh Sara sorry to hear of this setback. 
You have highlighted a big problem that I hear from USA friends who are dependent upon insurance companies, often to their detriment. 

Given that robotic surgery is much better for the patient though just doesn’t fit their calculations. Hopefully you will only be waiting a few weeks. Sometimes there are cancellations and perhaps you can let your team know that you would be happy to have a short notice period. 

The waiting is frustrating. I was diagnosed in July. I was on Jury service so told the hospital couldn't make it in when they first called to talk about my results from the hysteroscopy. I didn't think anything of it until they called back and put the fear of god in me! So it will be be a five week wait for surgery since diagnosis for me which I understand is quite quick, and the time does goes by. Having had the MRI and CT scan come back clear made me feel more relaxed. It's not an easy wait but I'm treating it like a warm up time. I'm eating super healthy and doing my kegels. I'm making sure I have stuff to keep me occupied and I'm watching trash on Netflix without guilt - although making sure I save some shows for recovery! The time will pass.

Hi Muse and Robotxxx

Thank you!

Yes I was told I must take the 1st available slot that comes up. I have week in Kefalonia booked (since last year) for my wedding anniversary 12-19th September. It's looking like that will have to be cancelled, unless a miracle happens. Obviously my health is more important. 

One question, while waiting for surgery did you work? With no operation date in site I don't feel like I can justify not working. My sick note runs out Wednesday of next week.   

On the one hand I don’t want people to know I have cancer. I work for a large company and I feel it would set tongues wagging! On the other hand I don’t want people to assume it will be business as usual because mentally I feel broken.

I'd like to know how others managed.

Thanks,

Sara

I'm self employed and free lance, and in the midst of applying for esa. I'm still able to do a little design work from home, but I also work production for live music and that work is booked up usually a few weeks in advance so I've had to turn down work as I didn't know when my surgery would be or when I'd have to be available for tests and the like.  That job involves long days, a lot of running around and carrying things so it'll be awhile before I can go back which is always a little worrying as a freelancer! I don't had a sick note yet as the Dr accidentally cancelled the e-appointment I made and now i have to wait till September for a new one which is after my surgery anyway. 

Can you talk to someone in HR maybe, privately and explain the situation? I don't think it's abad thing to take some time for yourself, but on the other hand sometimes being busy and sticking to routine is good for passing the time. My elderly aunt died the same week I was diagnosed and I had to spend several days traveling back and forth from the other side of London to Hampshire to sort out her flat. Although, I was sad that she had passed, it weirdly gave me something to concentrate on other than myself, plus she left me a little unexpected money which takes the worry of not working for a couple of months down!

As for holidays, hopefully your travel insurance will cover it if you can't make it but hopefully you'll know soon about your surgery date and can make a decision then. Kefalonia is lovely, it's been many years since I visited but I remember how clear the water was!