Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

I'm so scared 6 month post op and bleeding

Chickplc
Posted by

Hi G Bear Thank you for your kind words, I'm still dealing with it and trying to pick myself back up. Xxx

Arla
Posted by

Hi Dawn,

im really sorry that this happened to you, I'm glad to hear that you are through your treatment though, don't feel like you can't share news with us, we are all here to help whatever happens. 

Lots of love 

xxx

Chickplc
Posted by

Hi Arla thank you for your kind words.  Loads of things are going through my mind. At my appointment I asked why I couldn't have surgery and why I am I'm not having chemo.  The oncologist said that surgery risky and chemo would poison me. I'm quite fit so I was so baffled what was being said to me.  I have had 1 session of brachytherapy and no more has been planned it doesn't seam a lot compared to what other ladies have had.   Still unsure about things. Xx

Galanthophile
Posted by

Really sorry to hear about this development. Hope you find out the way through this asap xx

Arla
Posted by

I'm not a medic, but from what I've read here, the brachytherapy can be delivered in one big dose, or lots of small doses over several days, the difference in treatment options for brachytherapy is usually down to the equipment available at your local hospital.

If you want some medical help working through what they have told you, the eve appeal have a gynaecologist nurse specialist you can chat to, or you could give your cns a call if you have one

when do you see your consultant next? Are you on regular check ups? 

Xxx

Chickplc
Posted by

I am presuming that my next follow up is my next appointment. I have not been told anything  When I spoke about chemo to the oncologist I didn't know that the nodule had been removed. He just let me ramble on my husband clarified that the nodule had been removed.  I got the nodule size from my GP.  When I spoke again with the oncologist I got the impression they were concerned I would not have the the treatment knowing the nodule had been removed. Xx

niklap
Posted by

Hi Dawn, I'm sorry to hear about your reoccurrence. I was originally diagnosed Nov 16 with stage 1a grade 2 but in Nov 18 also had a reoccurrence, mine was lower down in the vagina so was classed as grade 4 metastic endometrial cancer in the vagina, they are also keeping an eye on my liver as there are some concerns about that to. I had 25 radio and 3 brachy which finished beginning of March this year. The cancer is currently 'contained' the oncologist says, whatever that means! I'm doing well, back to work almost full time and getting stronger by the day. I guess I just wanted you to know there's light at the end of the tunnel sweetheart and it's natural to stress and worry. It will take some time before you feel safe again but it gets easier each day x 

Nic xxx

There's a Silver lining in the clouds of doubt
Lean into the storm with
Open arms and let them know
You didn't come this far to just let go                                    Your spark can start a fire. .. 

Chickplc
Posted by

Hi thank you for your kind words. I have not been told a stage I wonder if that is because the nodule was removed? I was told by my consultant that it was ' curable' before I had the treatment. On the consent form it says recurrent. I have had 1  session  of PDR bachytherapy  (21 hours  in the room. ) There is no more planned at the moment. So sorry that you too have reoccured and thank you for sharing your journey. Take care xxx

Fairycake
Posted by

Hello I am so sorry to hear about the recurrence and all the worry you’re going through because of it. Gentle hugs coming your way. I’m glad you have felt  able to share this with us - of course we are upset and concerned for you because you are our friend but  we want to support you as best we can.

I can understand  you are worried that one session of brachytherapy might not be enough but we have to trust that our doctors will choose the best treatment plan for us. Chemo does help to mop up any stray cells - I had it because my cancer was an aggressive, high grade type staged at 3c1 with lymphnode involvement so they obviously had concerns about the possibility of stray cells. It is an aggressive treatment. Radiation is often used alone but there is a lifetime dose limit to radiation in a particular area hence why they may keep chemo in reserve. It might be worth a call to your CNS to ask her to explain your oncologists thinking on this - she has access to your notes - and hopefully she can put your mind at rest that you’ve had the best treatment for you at this time. 

Sending you lots of love and hugs. You are in my thoughts and prayers xx

Chickplc
Posted by

Hi Fairycake thank you for your support. My CNS nurse was in the appointment with me when the treatment was discussed when I asked about chemo she said we don't send in Goliath for a peanut from this I presume they have 'risked' assess me and given me the appropriate treatment. I think I came over very neurotic but they let me ramble on.  I feel that my treatment is based on the cancer being grade 1 and that the tumor was removed by the biopsy. The oncologist was concerned I wouldn't have the treatment for which I told him that wouldn't be the case. I think that because my experience is not progressing as envisage hence the bad luck comment I feel very very worried.  Thank you for responding take care and hugs xxxx

Lara lou xx
Posted by

Hi dawn I’m so sorry to read that you are going through this, I can not imagine how scared you are, this is always my main fear, I was the same stage and grade and recurrence is all I can think about so I really feel for you, however I know my fear is mainly because no other precaution treatment was used, which I know is normal procedure for our grade etc, but I just feel it would have given me a better peace of mind, you have now had that, the Bracy and it really is such a good thing to have for sorting out cancer, so please try to focus in that hun, I know it’s very hard to do but please try, you have had a good dose of bracy which has hopefully not only done it’s job but now gives you that protection going forward, big hugs to you and so sorry this has happened  but so glad you have been treated and In the mend now xx

Don’t ever give up hope, there are earth Angels all around us and Miracles really do happen xx 
Chickplc
Posted by

Hi Laura Lou thank you.  Me and you are very similar. I was never comfortable with just the surgery although for many at our diagnosis they are cured.  When I challenged the oncologist about why it has happened he spoke about the surgery and when I was speaking to the wonderful nurses on the treatment ward they categorised me as a mop up. The oncologist said it may be just 1 cell but they have to make sure.  When we start on this journey some of us are so worried and probably do  not know a lot about cancer - I didn't.  I may have made other decisions if I knew what I know now. But I can't live on what if on top of what if.  Take care and hugs xxx

NannyAnny
Posted by

Hi Chickpic,

I was so sorry to read about your incredibly bad luck. Hopefully they will keep a close eye on you now. I was Stage 1A grade 2, and am now on a self referral system. I'm ok after two years post op.

My husband had radiotherapy for throat cancer 13 years ago. He said it nearly killed him (very poorly at the end), At the time they said it was 'belt and braces'. Now we think it was well worth it!!!!    XXXXXX

oldady
Posted by

Hi  and 

You are not alone.  even if you are told you are  early stage it's only natural to be haunted by the prospect of a recurrence and think about the ''what if'. 

I was advised to have External RT and Brachy to reduce the risk ( I was grade 2, Over 75 and had LVSI)  and couldn't help wondering if it was enough.  I googled lots of serious studies about treatment and although I have a scientific background many of the statistics were beyond me.  I did , however, come to the conclusion that the treatment I was offered was  the internationally recommended. route for my age and diagnosis. The "Gold standard"!

My oncologist told me that she would never offer any treatment unless she was reasonably certain that the benefits would outweigh the possible disadvantages and she was following those international guidelines.  I am sure that all teams follow these guidelines which have been drawn up as a result of detailed analysis of many cases and take into account the age of the patient and their grade and stage etc.   The aim is to balance the risk of recurrence, the protection offered by treatment and the possibility of lasting adverse side effects.  

Occasionally I have read of ladies here who were borderline in the various criteria and were given a degree of choice .  This seemed to be quite  a traumatic thing to have to do and on balance it seems that we can rely on our teams to advise us.  I once said to my Oncologist "if only you had a crystal ball to see what my future holds!' 

It must be tough to have been faced  with your situation, , and like everyone else here I wish you well.  As you say, too much time thinking about the "What Ifs" is not a good idea.

XXXX

Anne

(Class of 2015!)

Chickplc
Posted by

Hi Oldlady thank you for your constructive comments and support.  I too read a lot and frightened myself to death. I am 58 and according to the doctor's I am very fit never smoked and rarely drink so I was given the radiotherapy.  If I analysis my experience this last few weeks  I feel that this reoccurence was treatable and I don't know whether having the 5mm tumor removed before brachetherapy lends support to this.  There was not a lot of dialogue from the doctor's they let me ramble on and answered my questions but it all felt very standard and my situation was not uncommon. I'm still raw and upset but I have to pick myself up and have faith in my oncologist who which according to the ward sisters is excellent in his field. XXX even