Metastasis -Stage 4b - Cancer spread to chest, spine, shoulder, lymph nodes

Previous post: www.jostrust.org.uk/node/11915

Posted - May 2012 - Sept 2013

 

Hi everyone,

I just wanted to pop on and share some good news and hopefully provide some hope to anyone diagnosed with mets or recurrence. 

My hisotory is below but as a short summary I have undergone chemo radiotherapy June 2010, a pelvic exenteration Jn 2011 and then was told that my cancer was back and had spread in May 2012. It was now in my spine, shoulder and lymph nodes in my chest, pelvic aorta and spine, I was told that I could not longer be cured and the best I could hope for was that the disease could be controlled but that my life expectancy now was 12 months to 2 years if I was lucky. I was devestated. 

I started on a trial called CIRCa but due to my sensitivity to the drug I was taken off the trial and continued with the Carboplatin and Taxol that I was taking in conjunction with the trial drug or placebo. I started palliative chemo in June 2012 and I finished it mid Oct 2012 after spending a few spells in hopsital with infections and which resulted in delayed cycles. I was scanned every 2 months as part of the trial and I continue to do so, my body responded to the treatment and by the 4th cycle the lymph nodes had resolved and the bones in my shoulder and spine showed signs of healing. 

I finished treatment 11 months ago and my latest scan result shows that I am still stable. Although it never goes away and I am realistic that the cancer will return one day I live for life and not for death, I do think of it, of course I do but it is a minimal part of my life at the moment whilst I am doing well and until I need to think of it in any other way I will continue to live. 

I hope that this provides hope to anyone who has heard this news as some ladies do respond to treatment and can live with cancer like a chronic illness. How long for I don't know but I plan to remain positive and raise awareness for as long as I can. 

I hope that those of you going treatment are responding well with minimal side effects and for those of you who have finished treatment try not to get bogged down on recurrence or mets, I know it is hard but don't spend any valuable time in dread and sadness, enjoy every moment. 

 

Lou x

 

Thank you for posting this. Although I am not in your position it is inspirational to read your posts. I have read them all. The hope you give to others who are feeling low is fantastic. The info you give on your treatment helps others not feel so alone or different.

I wish you lots of luck and many many happy days Xxx

Donna

Thank you Donna I wish you all the best with your hysterectomy on the 24th and have everything crossed that you get clear margins and a successful outcome.

Lou x

Hi Lou,

As Donna said, thanks so much for posting.  Posts like this really do provide information for others that you just cannot find anywhere else.  You are so brave and positive and I wish you all the very best.

Tess xx

Hi Lou,

Thank you for posting this, your words to not live in dread or sadness hit a nerve. I have spent too long being miserable, but today I have been and walked the furthest I've walked since my surgery. You are completely right - the time should not be wasted. None of us know what is round the corner. 

Keep being your amazing self, and best of luck for the future.

xx

Thanks Jo and Tess. 

Jo that is brilliant well done you! Life really is too short and worrying really cannot prevent anything from happening it just makes us miserable and stops us from doing things. Seize the day and enjoy every second xx

Thank you for posting this, I think everyone on this website is so brave and inspirational. It's great to see that no matter what people are going through they still want to share their experiences to help others. You have a fantastic outlook on life and I'm sure your positivity helps you in more ways than you think.

xx

You are one strong amazing lady x x x 

Thanks for posting this.

You sound very strong,With a good outlook.Been able to carry on "Living"in the knowledge that you have a terminal illness is a lesson to learn for everybody.

My brother had a terminal illness from birth and he lived everyday to the full, he was my inspiration.He died at 19years old.

I don't know what the out come for me is at the moment.I am having treatment and finding the daily radiotherapy very hard on my bowels.

I found out today its harder after a hysterectomy because it effects the bowels more!!

Funny because before this I thought it would be the chemo that was going to be awful(its not nice,but ok if you take the right meds!)

I don't know anybody who has had re-currence after such a long time.I am in the 2%,lucky me also adenocarcinoma.

Consultant seems cheery about it all,not asked anything so far regarding results just wait and see how it goes.She has given me extra chemo so is pleased I can take it.

Would like to here if anybody has same as me with lymph node involvement pelvic wall ovary etc.

Keep up the good work Lou.

Thanks for reading Becky x

Hi All,

I have just popped on to give an update from my last 2 monthly scan and I am thrilled to say that I am still stable!

The scans get harder every time as I move further away from the last cycle I had of palliative chemo and therefore more chance of the cancer coming back but I try to remain positive. I get the usual pre scan jitters that result in every part of my body aching or hurting in the lead up to the scan and which suddenly disappear when I find out I am still stable!!

 

Initially I was told that I would be offered this paliative chemo and this would be my final dose although they would review my case when the cancer returns. I have spoken with my consultant and the longer I remain stable the more chance of being treated with palliative chemo again especially after the 12 month post chemo mark. It won't be Taxol again as that is too hard on the body but they will consider Carboplatin and of course there are phase 1 trials out there. 

 

It's hard not to get too bogged down in the 'What will happen when....' scenario because currently there is no need to think down these lines but I like to know what my options are and just what is out there to be prepared.

 

I am now 18 months post diagnosis of mets with the involved lymph nodes in my pelvis, para aorta and chest resolved and my spine and and shoulder still showing as sclerotic (healing) with no change. I consider myself so very lucky and feel like I owe to those not so lucky to raise awareness and live life to the full. 

Rebecca I am sorry that you face a further battle and thank you for your kind words, your brother definitely had the right idea and I am sorry for your loss. Good luck with your treatment, I sincerely hope that is works. I too suffered terribly with my bowel during radiotherapy and I hope that you quickly recover once treatment finishes. 

 

For anyone reading this I would highly recommend one of the Jo's Support Groups, I co lead the Manchester group but alsoget so much from meeting with the fantastic group of ladies who come to the meetings myself. Everyone has an understanding and we all support each other, great friendships have been made and I would urge you to try one yourself if there is one local and if not maybe consider contacting Jo’s Trust to see if there is an opportunity in your local area for you!

I hope that for those of you facing recurrence or mets that these posts bring with them some positivity as I know I found it hard it hard to find anything positive when I received my news in May 2012. 

 

Good luck to those of you still fighting, stay strong and dig deep.

 

 

Lou x

 

 

Thanks Lou,

SO,so, happy for youLaughing.Everyday is precious and if having this does anything,it's make you realise that.

I have a friend that has terminal bone cancer and she has been very well for the past four years(Continues to be)

 with palliative chemo.So always hope and things to aim for.

Thanks for the reply for my tummy problems.I have a better selection of meds now so at last have some reliefLaughing

Take good care.

Rebecca X

Dear Lou & Rebecca

What wonderful, strong ladies you are!! Thank you for sharing your experiences, I pray you stay stable & for improved health overall for you both! I feel iike such a wimp worrying about my surgery next week- radical hysterectomy! Thank you again & best wishes xxx

Hi Salamoenti,

Please don't think of yourself as a whimp.

It is a very hard experience having an hysterectmy and not something to be taken lightly.

Be kind to yourself and don't rush your recovery it takes time on the physical and mental level to come to terms with.

Take care and hope everything goes well.

Rebecca X

Hi everyone,

I just wanted to come and update my status as I do receive messages saying people stumble across or follow progress

via the forum. This is especially important I think when you are living with an incurable diagnosis, as I have said previously 

when I got rediagnosed I could not get any positive information from anywhere and this was really difficult.

 

I had my last scan at the beginning of January 2014 and heard that magnificent news that I continue to be stable. 

My consultant is thrilled and offered for me to now go to 3 months scans if I want to!!!! I am terrified about leaving it 

longer than 2 months but appreciate that it gives me more of a break the hopsital and tests etc so I have agreed 

providing I can go back to 2 months if I have a wobble!!!

 

So that is my latest update and where I am up to, I hope that you are all holding up and are okay. 

 

Thanks 

 

Lou 

 

 

Lou that's great news, long may it continue!  It does good  to read your posts & for other ladies with stage 4 or mets - very reassuring to know there are positive stories out there - please continue to update us.

God Bless

Sharon

Lou, Like you say you can always increase your scans if you have a wobble.  Please keep sharing your story, you are an amazing person.

 

Lots of love,

Tess xxx

Hi, thanks for updating your post. I first read it in dec when I was diagnosed with mets in the pelvic and para aortic nodes. I too was given 12 months. It has given me hope and determination to win the battle. I’m pleased to say that after only 3 cycles of cisplatin and topotecan it appears to have gone from the pelvic nodes and reduced by 50% in the para aortic nodes. I now have the possibility of radio and/or surgery!

I am continuing with 3 more cycles of chemo then we will see what the ct shows and fingers crossed further treatment will be planned.

Thanks again and please keep updating this post. Best of luck xxx

Dear Lou,

i wish you many good days ahead and thank you for sharing your story. I've just had the news that my cancer is back. After two weeks of in-patient tests,  an MRI scan showed a tumour in lymph nodes in my spine. I'm seeing my oncologist next week to find out more. I feel very positive right now, maybe because I know what to expect in terms of treatment. The information in your post is very helpful too. I'm determined to live life to the full, as you do. I know there are tough treatment days ahead but I'm mentally strong and ready to deal with them.

I'm in a much better place than I was when I was first diagnosed and discovered I had stage 2b CC. I have an excellent oncologist and the Palliative Care Team is very supportive. I also know that morphine doesn't work well for me, a very important discovery made during my first round of treatments. I take oral ketamine instead and this controls my pain very well. So, one day at a time. Onward and upward!

Take care

Caroline x

Dear Ejak, thank you for posting your news. I'm just waiting to see my oncologist to find out more, having been told I have a tumour in spinal lymph nodes Following an MRI scan last week. I don't think the medics can predict how long we will survive because treatment is advancing all the time and they don't have enough data yet to say anything definitive. Let's hope we confound them all by living well past their expectations. Staying in a positive frame of mind must be good for us. I want to maintain as normal a life as possible, including a social life, so I'm encouraging my family and friends to keep including us in their events, even if it's just going out for a coffee somewhere. It's so easy to be isolated when everyone tries too hard to be sensitive. 

I hope you continue posting updates. We need to hear from each other.

All the very best.

Caroline xx

Hi everyone, 

 

I've had a few personal messages about treatment/surgery and to see how I am doing and realised due to issues posting with my ipad I hadn't posted for a while, I didn't realise that my last post had been February! 

I feel awful for this as one of the reasons I started this thread was because when I was diagnosed incurable all the ladies I knew were no longer posting and I couldn't find encouraging information anywhere, I promised myself that I would regularly update so others who may stumble across would be able to follow my journey and it would provide hope ( I hoped and still do!) 

 

Well, over the last 7 months I have had 4 scans, my usual CT scans as part of the CIRCa trial and 2 additional MRI scans. The first MRI was due to severe pain in my hip and leg which actually prevented me from walking but this was due to a fracture and is now showing signs of healing since I increased my walking. The second MRI was due to bleeding and some pinky discharge, this was due to an infection and thankfully not cancer related. 

 

My next scan is 23rd September and I'm hoping that nothing additional will be required this time. I tend to get on with my life without spending huge amounts of time thinking about my diagnosis but something always seems to come up just before scans, especially since I went 3 monthly and this time it's chest pain. 

I had a lymph node involved in my original mets diagnosis and I am trying to remember what symptoms I had and how they felt, I had also been suffering with dehydration due to my ileostomy so I'm not sure if the fluttering in my chest, slight breathlessness and pressing feeling was the node or the dehydration.  The CT scan which always includes my thorax will rule anything out I'm sure and I haven't got long to wait. 

 

I will endeavour to post earlier this time but in the meantime I hope that anyone going through treatment is holding on in there and I wish everyone well. 

 

Lou x