Waiting and worrying

Hi EB86 and welcome to our group.

I’m sorry to read about your sister’s diagnosis-it must be hard for you as her sister waiting for more information and the next steps.

I can identify with some of the things which brought me to see a doctor-abnormal bleeding, pain and discharge but I didn’t have necrotic tissue coming away. 

My cancer was “locally advanced” at stage 2b, which meant my tumour had spread slightly to the surrounding tissues so surgery wasn’t an option and I had chemotherapy and radiation as my first line of treatment. 

Once the mri is done, there will be a wait for the results which will hopefully come quickly if your sister has advanced cancer, and then the treatment plan will be decided. It sounds like surgery will not be an option if the tumour is advanced but others may be able to share their experiences-which would typically be of chemotherapy or concurrent chemotherapy and radiation. As you say, every case is different. 

Words like advanced can make things extra scary when there’s no further details yet- how is your sister coping? I hope she’s having her pain managed as this can definitely wear you down along with the bleeding. I hope you’re looking after yourself too-if you can’t sleep that will make things extra difficult for you , but once a plan is in place hopefully things will become easier.

Please keep posting and let us know how things are going, and there will be support here for you both in the group whenever you need it.

Take care

Sarah xx

Hi, firstly I’m sorry you and your sister are going through this. My diagnosis had some similarities, in that I had a visible tumour on my cervix that the dr knew instantly it was cancerous when he seen it. During the biopsy he removed 4cm of tumour and the mri showed there is still a sizeable tumour remaining, with the largest side being 4cm still. I’ve been told my cancer is Stage 2 and will start radiotherapy treatment with chemotherapy. 

My symptoms were some light bleeding, watery discharge and a pain in my side in the morning/during the night but this would go away again a few minutes after getting up in the morning. I don’t think I had any necrotic tissue coming away though.

Sorry to jump on, with msg being down I thought id find a post to ask how you’re doing and if you’d started treatment yet xx

Hey, how have you been getting on? Thanks for reaching out. 

I’ve done 6 radiotherapy sessions and 1 day of cisplatin chemo (yesterday) so far. It has been ok, I’ve been tired, a bit sore and feelings of nausea but I’m coping and still able to spend some quality time each day with the kids. I think the side effects will get worse but I’ll worry about that as it happens. 

Well I’m glad you finally got to start your treatment, how many weeks have you got to do? 
I'm doing ok it was my third treatment today… I finally got a picc line fitted this week after 5 attempts over 2 visits to save my poor veins from repeated cannulas.. 

my chemo so far is every Thursday so Saturdays and Sundays seem to be my worst days for symptoms… but I’m managing it better with the anti sickness drugs.. 

ginger biscuits and ginger tea are helping with my nausea maybe you could try them. 

its really great you’re still getting some family time, I’ve been off sick from work since I started treatment so I’ve had lots of family time… they’re all taking care of me in their own ways which is really sweet. 

Anyway keep in touch if you can, I’m here for you x 

Hi Sarah, I was diagnosed yesterday and was also told that it had definitely spread to my womb.  I am awaiting MRI to determine full staging.  I was just wondering why they dont operate if the cancer has only locally advanced, for example in my case, could they not just remove my cervix and womb?  Or do they do chemo first in these cases and then hysterectomy after? Sorry for all the questions my mind is in overdrive.  Thank you

Hi Sarah, I've just read your story, my gosh you've been through it.  It actually answers some of my questions though.  I hope you're ok x

Hi GMCdc6d25 and welcome to our group.

I’m sorry you’ve had this diagnosis, and that you’ve been advised the cancer has spread to your womb-it’s a horrible shock to get.

My cancer was locally advanced in that it had spread to some surrounding tissues, and at stage 2b as I was, surgery is never an option if international treatment guidelines are being followed. The danger of surgery is that it may allow the cancer to spread further, so standard treatment would be some form of chemo and radiation. You may read of some ladies having a hysterectomy with a higher stage cancer, but those I’ve seen in the group had the surgery based on a lower staging from their doctor originally or were not in the UK, and the cancer was re staged after surgery. 

I’ve seen a couple of ladies post fairly recently about having a hysterectomy following chemoradiation but that is normally only done where there is a recurrence of the original  cancer or if chemoradiation has not fully removed the cancer after treatment and it is still there. 

As you’ve read my story, you’ll know that my surgeon attempted a hysterectomy when I had my recurrence but it wasn’t possible, so it’s not automatic that everyone can have a hysterectomy after radiation and it would only be attempted in certain circumstances. It’s definitely not something that’s done routinely after chemo and/or radiation treatment. If you have spread to your womb, it would be likely that your treatment will involve a combination of chemo and radiotherapy, but not surgery.

I’ve encountered a number of ladies who did try a hysterectomy after chemoradiation and the reason I know them is that they came to join my support group for pelvic exenteration surgery as the hysterectomy was unsuccessful after their treatment. If I had my time again, I personally wouldn’t try it but I appreciate that everyone would have different feelings about that. I really hoped it would work, and when it didn’t, I had to wait to heal and then have exenteration surgery so it was a huge thing to go through all of that in a matter of weeks. 

Anyway, it’s too early to be thinking about all that at the moment! The priority will be getting your staging information after the mri. Did you already have a ct scan? I’m just wondering what the information about definite spread to your womb is based on? 

I hope you’ll keep in touch and let us know how your’e getting on. How are you feeling about everything? I found it a lot to get my head round when I was first diagnosed.

Sarah xx

Hi Sarah,

Thank you for coming back to me so quickly.  I honestly can't believe what you've gone through and you are now helping people with your knowledge from experience.  Again thank you so much.  When the dr took a biopsy of my tumor, she also took tissue samples from my endometrine (i think there was a lot of blood and clots) which also tested positive for malignancy so that is how they detected the spread. Lots of the tissue was necrotic, does that usually mean the cancer is more advanced? I have an pelvic MRI this evening with chest and abdomen CTs to be next.  I'm expecting the worst.  I appreciate your talking with me.  I would love to keep in touch.

Hi again

Ah, I understand now that you’ve had endometrial samples done too. I haven’t got any experience of having necrotic tissue myself, so I’m not certain of what it might mean for you, but once your results are in everything will be explained for you. 

If you haven’t had a pelvic mri before, it’s noisy! No-one warned me in advance so I got a shock. Obviously I’ve had many since my original diagnosis, and I always request an eye mask as I find that easier. I don’t know if you might be claustrophobic, but I am, so I find it difficult. The eye mask, and the music they can play on the headphones can help. It takes quite a long time to complete the mri, so I found anything that helped me was a benefit!

I’ve always found CT scans much easier to go through, as you’re not enclosed like the mri, and they tend to be shorter in length. Having these different types of scans gives a range of different image to the medics and allows them to plan exactly the right treatment for each individual. Mind you, the ct scan can give you a feeling of wanting to wet yourself and I ended up afterwards looking at the table just in case! I had it, but it’s a strange feeling. 

Try not to think too far ahead-I absolutely know that’s hard not to do, but I found it easier to just take one appointment and scan at a time. If you let your mind wander, it’s rarely positive, and I’m speaking from experience here! I’ve spent far more time over the years worrying than I should have, 

I’m around every day in the group, so always happy to be in touch and chat whenever you need. I hope your scan later goes ok and try to remember that there will always be a plan.

Sarah xx