Topic: Scan Results

So had my CT scan on Wednesday and went to see my doc yesterday morning who confirmed what I had thought and that the cancer had returned. My liver is fairly clear but I have a mass in my abdomen and spots in my lungs, along with a couple of other areas. I also have lumps on my head, which while not cancerous are being caused by it.

There is also some evidence of a mass in my hip which could cause bone weakening and potentially cause my hip to fracture. There are specialists looking at my scans now to see if they need to operate.

The upshot of it all is that I have been given an estimated prognosis of around 6 months. I cannot understand it but I haven't been crying, whereas before when I was just thinking about it I could hardly stop the tears! I think I was just in, and maybe still am, shock and am feeling pretty numb at the moment. I am going to continue with chemotherapy, getting second opinions from other docs of course and have been advised to see the team at the Royal Marsden hospital, a leading cancer unit in the UK who can offer other options. It can't hurt to look anyway.

Yesterday was the worst day of my life and now I have to get on with looking at other options to see if anything can help (any suggestions more than welcome) and seeing what I can do in the time I have left.

Tom

Re: Scan Results

Tom,
    I am so sorry to hear your news. Have you told your family? It is always easiest to bear up if we have people to share our sorrow. Thank God we all have this forum - what would we do w/o it?

   A couple of good things - you are young, and your body should be better able to fight this off. Also, the chemo might do its "thing", and you could get shrinkage for those tumors.

   Maybe our other UK friends will have suggestions for other Doctors and hospitals where you can seek another opinion? The Royal Marsden Hospital sounds like a good choice. There are things showing up on the horizon all the time, and perhaps you could find a new clincal trial to enroll in.

   I will be thinking of you, and praying also.

Joyce C.

Re: Scan Results

Tom,

I am so sorry to hear that the reports are not good.  I do agree with Joyce that you have a lot in your favor. I too think you need support from family and friends right now. Know that you will always have all the support you want or need here. You are amoung friends and we all know what it feels like & what you must be going through right now.

As for the tears, I too did not cry at times when I thought I whould have & then will cry at the drop of a hat over some thing relatively insignificant.  I think you are right that part of it is we go through a period of being so stressed, shocked & numb and then it starts to sink in & we have to deal with the reality of it. It does make us so very fragile, doesn't it?

I am sure that some of the others in the UK will have some suggestions for you and that you will be hearing from them soon.

Please keep us informed as to how things are going and know that you will be in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Scan Results

Hi Tom. Wow! That stinks. I agree with the others that you may have age on your side. Perhaps subconsciously you steeled your mind for the worst and now its fighting time and I believe fight takes over all other emotions. Which is a good thing. I would definitely get other opinions and tackle each issue one at a time. If I am correct the "other" spots have a better chance to be beaten so it's a very good thing the liver is clear. Don't carry the burden yourself, let others help. And please keep us posted! We care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

5 (edited by devoncat Sat, 28 Feb 2009 08:45:12)

Re: Scan Results

I understand how you feel. I had the same reaction. Tears before, strength after knowledge. I too feel in shock. I am sorry that you are having to face this. I dont know how long the doctors think I have. I havent asked and I dont want to know. I would turn into a raving banshee if I was told so I am very impressed with your strength.

Perhaps you could check out a couple of these medical trials going on in the EU. I was looking into this one in Denmark http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=3 that includes all the standard chemos, plus a "biological treatment".

Here is one in Britain that is using stenting and Photodynamic Therapy
http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=2

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Scan Results

Hello Tom, just a note to say that I'm thinking about you.  You know you're always safe to come back here & share what's going on, as the emotions of it all can change from day to day, as you've said. You're not alone & I"m sending millions of good wishes to you, for your fight.  Keep us posted Tom, you're in our thoughts.

Tess

Re: Scan Results

It's JUST NOT FAIR!

Re: Scan Results

Tom...do you need any help with reaching out for other medical opinions?  If so, please let me know.  I wonder whether the hip area is of major concern right now.  On this board, we have seen others with bone mestaseses our JeffG for example, speaks about it frequently.  I am still puzzled by the spots on your head as this has never been mentioned on this board, by anyone. 
Given the diagnoses by your current physician, it is an absolute must for you be be consulting with one, two, or more doctors familiar with the progression of this disease.
This is something I did for my husband as being ill and having to absorb this kind of information is just too much for anyone to handle.  Therefore, I made all necessary connections on his behalf.  Is somone there for you to take away some of the work it entails to make these other contacts?
Please, stay in touch
Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Scan Results

What Marion says is very true and important, Tom, about having someone lift some of your burden. I make all the appointments, gather all the information, do the research. When Teddy goes to a doctor I take notes and ask questions.
One might say you need a medical secretary and advocate?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scan Results

I haven't cried much yet but hope for a good long cathartic cry at some point.  right now my abdomen is so tender from having a stent placed and an inflamed pancreas reaction that it hurts too much to cry even if I could.  It hurts to laugh too which is worse.   I'm sure the tears will come when you feel saffe enough and ready to discharge some of that pain.

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: Scan Results

Dear Tom,

A doctor can tell you what USUALLY happens in a particular stage of a disease, but he or she can never tell you for certain what will happen to YOU. Please try to keep this in mind, and I agree with all the others that you need to keep seeking opinions from other experts, and you need someone to carry some of the burden of seeking information.

Wishing you all the best!

Kristin

Peace, hope, and healing to all!

Re: Scan Results

Tom,  Sorry to hear your prognosis.  Quite sobbering to say the least.  Checking out the team at the Royal Marsden sounds like a plan.  It will at least clarify if something else can possible be done.  Even being on hospice I sometimes say to myself , only 6 months?  I've always remained optimistic and pressed on with life dispite how many times I've been told the end is near.  I'm just a hopeful, and have faith that miracles do happen.  And after 10 years of battling, I have had plenty of time to come to peace with what ever God has planned for me. I pray for the best for you and hope Royal Marsden can offer you something.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Scan Results

Hi all,

Thanks for your messages of love and support. I have of course told my family, I am back living at home now since my surgery so they have been with me every step of the way. Obviously they are finding it difficult to deal with this as am I but we are attempting to be strong together. There have been tears over the weekend, and I am thinking how to tell the rest of my family and specific friends.

I do think the hip area is of concern right now, I am waiting to hear early this week about a course of action as I do get some pain from it at the min. It has only come on since I was told about it so I am unsure whether the pain is from me overcompensating and trying to protect the area too much.

My father is my great help at the minute speaking to the other doctors from me, and he will get in touch with the other docs, does anyone have any specific recommendations for me? I do not have any specific names of other oncologists, but am willing to contact anyone who can offer another opinion.

I keep trying to stay positive and tell myself I am young so I can fight this, but am still coming to terms with it. I just can't believe it is happening to me, I have too many things to experience in life.

Tom

Re: Scan Results

Good Morning Tom, or afternoon across them miles. It sounds like you have "it" under control and it's wonderful that you have family and friends to help. I always say I like to be realistically optimistic. Your attitude can help get you through everything. We love hearing from you so let us know about that darn hip. You go on experiencing you are too young not to take it all in!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scan Results

Hi Tom

I agree with Lainy, your attitude is great & you seem to be handling things well under difficult circumstances. Having family & friends to support you is a big plus and your great attitude & your age are on your side. Just keep on living for today & keep experiencing everything that you can.

Love & Hugs,

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Scan Results

Tom.....do you receive copies of your records including, copies of the scans? I don't know how it works in the UK however, in the US is is possible to forward all to a specialist to evaluate.  In many instances a personal visit is not necessary. 
You must know that tons of love, support, and wishing for hope is coming your way.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Scan Results

Today has been much better, I struggled again to get out of bed due to my hip, I think I must have hurt it in some way during the night. But there has been a lot of improvement today and I can now move around a lot easier. I chased the orthopedist again today and am expecting to hear from them tomorrow.

I do have copies of my most recent scans and records which I am going to forward to other specialists to garner their opinions.

Re: Scan Results

Tom...I am so happy to hear that you are feeling better today.  Can't wait to hear what the orthopedist has to say and am hoping for good news coming your way.
I am glad that you have made the decision for other specialists to peruse your records. 
Please, stay in touch.
Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Scan Results

Tom I would like to send a few sympathy vibes your way also.My husband had a few lumps on the head too,a bit anoying and aparrently not that common but they actually shrank back in size and never caused much problem.
                kind regards   Janet

Re: Scan Results

majic...what kind of lumps were those?  Was it suspected to be related to the cancer?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Scan Results

Hi yes accor ding to the oncologist they were related to the cancer but not a usual occurence
   Janet

Re: Scan Results

Afternoon guys and girls,

Next week is shaping up to be a busy one! I have an appointment to see the orthopedist on Monday to discuss my hip which is getting better day by day but still causing me problems. Then I have chemotherapy on Tuesday and have received a letter today containing my appointment for the Royal Marsden Hospital for Friday to see what they can offer.j

Am also seeing my oncologist tomorrow morning, I am going to ask for a bit more information as when I saw her last week I didn't really ask any questions after the I was given my prognosis, which was understandable, as I wasn't thinking straight at the time. But now my head is feeling a bit clearer I can hopefully begin to understand things a bit more.

This week I have generally been feeling ok, helped by the fact it has been my week off chemo, just had the problems with my hip. Will be interesting to see if my CA-19 levels have increased (I was told they were at 80 last week). I am expecting them to have gone up but we shall see. The lumps on my head are still evident and I need some more info on those too.

Wishing everyone a great weekend!

Tom

Re: Scan Results

Hi Tom and good day to you too. All sound good. It does begin to feel like one is running a business not an illness, yes? Hoping for all good reports for you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Scan Results

Hi again all, thought I would give you a bit of an update. I started my next next cycle of chemo yesterday with Gemzar and Cisplatin.

But with regards my hip I met with an orthopaedist on Monday to decide upon a course of action, had an x-ray and it turns out my left hip is of most concern as the socket of the joint is affected so with my prognosis they are worried about recovery times. I have been referred to the Royal National Orthopaedic Hospital (which is the leading bone tumour unit in the UK) for a more specialised opinion. I have an appointment tomorrow morning so hopefully I will have a plan of action tomorrow! It is causing me a lot of hassle as it is affecting my mobility which is the most important thing to me as it means I cannot get out and about as much as I want to, being forced to stay in makes me feel more like a prisoner to this disease and brings me down.

Tom

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Tom....Our JeffG has written numerous times in re: to "mets to bones".  You might, if you feel inclined to do so, peruse some of his threads.  I am wishing and hoping for a treatment protocol to be the result of tomorrow's visit with the Royal National Hospital. 
Thinking of you and sending tons of good wishes your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER