It’s back!!

Hello Sasue

What a frightening week for you, I am so sorry to hear you have been so unwell and that scans have shown what may be new activity.  Of course you must be in absolute turmoil and need reassurance.  As a lay person I really don't know the answers.  What I do know is that many cancers are treatable and there are people living a fulfilling and active life where it is treated very much as a chronic illness and kept under control with chemo.  Also, no one, not even the oncologists, know how an individual will react to a given treatment, some have exceptional results that can open avenues to surgery and other treatments with curative intent.

Are you in the hospital where you had the initial treatment?  If so I am sure you will be seeing the oncologist that first treated you very soon, there will probably be more scans and the multidisciplinary team (MDT) will decide the next stage of treatment.

I really wish I could help you more, the waiting to find out must be so hard.  I am thinking of you and hoping that you speak to your oncologist very soon.

Irene xx 

Thank you for replying, I guess I just need to be patient and trust the professionals, I’m still in hospital so can’t think of a better place to be at the moment lol x

Hi Sasue , I really wish I had some answers for you but please be assured that we’re here to support you throughout whatever it is that you’re facing. 

I can only imagine what a frightening time this is for you & as Irene has said I should imagine the results of your scans etc., will be passed on to your oncologist & then much like with your original diagnosis a meeting (MDT) will be held & decisions will be made on how you move forward from here.

I agree with what you’ve said in your reply to Irene that you really are in the best place & hopefully with you already being in hospital it may mean that things will move a little faster than if you were at home. Don’t be afraid to ask questions while you’re there also! If someone doesn’t update you soon ask someone what the next steps are. 

If you feel able to please keep us updated on how you’re doing, I’ll be thinking of you & hope to get some answers very soon. 

Nicola 

Oh Sasue, that's everyone's nightmare! I'm so glad they found the clots in time, and to do the scan! No advice, I'm afraid, I have no idea what's happening, but please keep us updated. I hope you get useful info TODAY!

Hugs

Suz

Hello Sasue ,

I’m so sorry to see this post.  I can imagine how worried you must be.  First, I do hope they have your immediate symptoms and discomfort under control.  Next, I hope, like Nikki65 said, that because you’re already in the hospital, the tests and recommendations will come faster for you than if you were trying to coordinate this from home.

I’m not a doctor, and everyone’s diagnosis and needs in treatment are a little different, but I’d guess that you might do some kind of systemic chemo next.  My doctors explained to me that when cancer spreads to lungs and/or liver, it usually means the cancerous cells have spread by blood, not lymph, and chemo is medicine delivered directly to the blood.  As the spots on my liver were found in my initial diagnosis, I had carboplatin and paclitaxel, four rounds (3 months), prior to ever starting chemo-radiation.  It was extremely effective for me, and side effects were not at all as bad as I’d expected.  Later, after completing chemo-radiation as well, I had liver ablation and resection.  I have been NED for well over a year now.  You can read my full story by clicking on my screen name.

I think, like Irene75359 said, there are many paths the team could recommend for you.  The research on cancer, and especially colorectal cancer, is moving very fast right now.  Please keep advocating for yourself, asking questions, and as much as you’re able, take good care of your “basics”—healthy food, drinking water, activity that you’re allowed, and rest.  You’ll be best prepared for the next stage of treatment!

We are cheering for you!

Red

Thank you all so much for kind words and support…unfortunately as it’s now in spine it’s treatable but not curable…been told prognosis is approx 12-24 months but I’m staying positive as things do mo quickly and I’m just going to take each day as it comes  xx

All of my heart to you.

Suz

I’m so sorry to be reading this this morning Sasue . 

Your attitude is amazing & one I hope I would have facing this situation. 

I was speaking with a lady earlier this week with a late diagnosis of lung cancer who has been told she has a pretty poor prognosis, she said to me that she intends to live every one of the days she’s still here & ‘will not sit around waiting for the end!’. She said if anything it’s given her a new zest to do all the things she’s ever put off for another day. I know they’ve given you this prognosis but I would try not to focus too much on that, I understand this is no longer curable but try & focus on the ‘treatable’, many, many people these days are living with cancer way beyond prognosis with the advancement of treatments & medications. 

Please know we’re here for you & there’s also the Secondary bone cancer forum if you need more specific advice or support regarding your spine. 

One thing I will say is even though you’re up for this fight please don’t feel you always have to be brave, this is a safe place where you can be vulnerable if you need to be amongst people that understand, the same applies if you feel the need of a good rant, we’re here. 

You're in my thoughts & prayers. 

Nicola 

Sasue, I really didn't want to hear this.  I am so sorry and am filled with admiration with how you are facing this.  I completely agree with Nicola, don't focus on what they have told you - it is only an estimate after all and the next round of treatment might prove really successful in keeping this at bay.  I know of lots of people who have been given a dismal prognosis and have defied all the odds.

Please come here to talk, moan or rant, whatever you need, and know that we are all rooting for you in every way possible.

Irene xx

Well…this is certainly not what I’d hoped to see.  I have been thinking of what might be helpful for me to write, in addition to all of the notes of support and hugs you’re receiving from afar.

My first reaction is that if it’s still treatable, that’s good.  If I understand correctly, there are some very promising things happening in immunotherapy in this type of cancer.  It’s not my business to assume what treatment you should do or have, but if you’re inclined to pursue treatment, maybe ask about immunotherapy and/or clinical trials.  There may be something very effective out there for you.  As you and I agree that medical developments are moving quickly, and as Irene75359 said, many people far surpass that initial prognosis.

Meanwhile, know that I hold you in my meditation each morning, and my prayers each evening.

Hugs across the miles,

Red