4 years post total hysterectomy / new mass, bleeding & cramps

Hi  I haven’t any experience of this but I noticed you hadn’t had any replies so just popped in to say hello and to offer you a gentle, supportive hug. I’m so sorry to hear you have these symptoms and all the worry about possible recurrence. It sounds like you’re going through a very stressful time. I’m tagging niklap because I know she had a recurrence fairly recently and also the lovely because she may have some helpful insights to offer you. Please let us know how you get on. Sending you lots of good wishes. Whatever the outcome today we are here for you x

Hi

I am so sorry to hear about your symptoms and I can see how you would be worried that this is a recurrence. I think the first thing to say is don’t put the cart before the horse. You won’t know what you’re dealing with until you’ve had results today - and even then you may not know for certain as getting a definitive diagnosis may require a biopsy or a PET scan. 

I have been through a recurrence although it was picked up by a CT scan rather than symptoms. I was diagnosed with a high grade, high stage cancer and had some cancer the surgeons couldn’t remove so recurrence was inevitable - it was a question of when, not if. So I had regular CT scans to keep an eye on things. This showed a small mass where the inoperable tumour had been. It was too small to biopsy so my consultant used a PET scan to confirm it was cancer and not just a swollen lymph node. 

We treated this with a specialist radiotherapy technique called SABR (basically blasting the node with high dose xrays) and that was successful but the cancer spread anyway and I developed new cancer in distant lymph nodes and in my lung and liver.  

That was all over three years ago and now I’m living with incurable cancer. I’ve had lots of different types of treatment since then (it’s all in my profile) and I’m now on a clinical trial. My consultant is very research active and we have managed to keep the various tumours in check. They grow a bit and we start some treatment and they shrink a bit. I keep rocking on somehow. 

Right now I’m not sure what else I can say. Obviously a recurrence is not great but actually it’s not necessarily the end of the world that it might seem to you now as you wait for today’s appointment.

Tell me you have someone going with you today?  Please let me know how you get on. I don’t often pop into the womb cancer group these days - I feel a bit of a dinosaur as I was first diagnosed over five years ago. Might be best to tag me  (type the @ symbol, then start typing my user name daloni. Hit return once you have my name in a blue box and the system will email  me an  alert to your message)  

I have everything crossed for you 

xx

Thank you . I remember your kind words and wisdom from my first time here 4 years ago. 

Yes I shouldn’t put the cart before the horse but it’s so hard not to when the symptoms seem to be multiplying daily. At least I don’t have long to wait until I get some news, but I know it is likely I will need further tests. 

It is hard because it triggers the experience from first time round (which has other implications - resulted in divorce!) and all that horrible period in the waiting for news. Also today my sister is seeing a consultant about a large breast lump her doctor found. Big day for two sisters both under 40. 

My mum is coming with me - she has been great and I feel so lucky to have a team of family and friends ready to jump in and be there for me. Definitely makes a difference and not a privilege I take lightly. 

Time for breakfast I think and to keep myself distracted until it’s time to leave. 

Xx

Hi Katie,

Just popped in to say that I have no relevant experience for you, but my daughter had breast cancer at the age of 37, with a 15 month old child. She had a lumpectomy, chemo and radiotherapy. The chemo was very hard for her and she spent one week out of three in bed, while I looked after the grand child. But, 6 years later she is fine!!

The very best to both of you. xxxxx

Thank you

Hi

That is a big day! Your poor mum. She must be living on her nerves just now. And your sister. What a very difficult time for your family - although it sounds like you look after each other. Please have a group hug and imagine me in there too. 

I’m off to hospital too. No breakfast for me though. I am on an experimental drug and they need to do blood tests etc before I take it today. 

Xx

Good luck to you too @Daloni - wishing you the best for it  xx

Hi katieBH sorry to hear of the worry of a possible recurrence. I was diagnosed 3 years ago initially staged at 1b until the cancer showed up in a pelvic lymph node on preop mri. I was then upstaged to stage 3. Ive had 6 monthly scans since which were clear until my last one in feb which showed a slightly enlarged lymph node in my abdomen. A petscan in may was positive and i was due to have surgery last week. Unfortunately this was cancelled because the node is very close to my kidney and needs a urologist present who was unavailable on the op date. Im currently chasing the hospital for a new date as time is marching on. Its an unsettling time even though i was warned the cancer could recur it was still a big shock because ive been so well. All the best youre not alone! 

Love kate xx

Hi I have just finished my treatment for my reoccurence. I was stage 1 a grade 1 Oct 2018 and the cancer was found April 2019 at the top of my vagina. The symptoms was bleeding but speaking with the lovely ladies here not all bleedings are reoccurence.  I'm just coming through it Niklap was very supportive . Take care and hugs Dawn

Hi I have just finished my treatment for my reoccurence. I was stage 1 a grade 1 Oct 2018 and the cancer was found April 2019 at the top of my vagina. The symptoms was bleeding but speaking with the lovely ladies here not all bleedings are reoccurence. My CT scan in May was clear. Had brachetherapy so I'm hoping I am ok going forward.  I'm just coming through it Niklap was very supportive . Take care and hugs Dawn