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Author Topic: treatment options after chemo  (Read 886 times)
Evie
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« on: November 30, 2012, 06:08:47 PM »

could i ask does anyone know what the acceptable time is between chemo ending and surgery? I'm so confused with what has happened recently. A couple of weeks ago my oncologist rang me and said that the MDT had decided I was suitable for surgery. This after being told in january I was incurable and inoperable was fantastic news.I have rectal cancer with mets to liver and left lung, although whats on the lung is no longer showing on the scans. We went along to see the surgeon who started to cast doubts over surgery and said he was thinking i should have radiotherapy first to make for more clear margins. This surgeon had not been at any of the MDT's that discussed me. After another week's wait a colorectal nurse rang me to say they were definitely proceeding with radiotherapy which would be 5 weeks worth, then wait another 5 weeks before scanning. Providing the lung mets remain stable they would then proceed to operate. My grave concern is how can they remain stable? They are what has not responded so well to chemo, unlike the primary and liver. With all of this going around in my head I contacted my oncologist who said they couldn't give me chemo and radiotherapy at the same time?Huh??,( I know people have chemo/radiation) and that there needs to be a sufficient break between ending chemo and surgery. I've worked out that the timescale will be about 5 and a half months between the end of chemo and potential surgery, surely they should give me at least 1-2 rounds of chemo. I had no infections during 9 months of chemo, and recovered really quickly, I was chucking myself down the slides at Center Parcs 3 weeks after finishing chemo! It seems no one is listening to me at my hospital, and that it is very much a closed shop. I don't know what to do, any suggestions would be greatly appreciated.
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suze
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« Reply #1 on: November 30, 2012, 07:24:50 PM »

Hi

This is very complicated.  I don't know how normal your situation is, but I know it is normal to review treatment plans and evolve them as things respond(or don't!)  to the treatment already used.
I guess the week's wait is pretty standard in the sense that MD Teams tend to meet weekly.  

It is a pity that no-one seems to be keen to explain the thinking to you a bit more coherently
It seems you do not really have a member of staff there whose ear you can grab to get clarity about what they are planning.  Your oncologist has told you they cannot give chemo and radiation at the same time, which does seem really odd, since lots of us HAVE had that! myself included ...


I doubt that there is a real answer to your question about a reasonable time between parts of the process, but I can see why you are anxious about the gap between the chemo you have had already and the surgery you are promised being done --  but tbh  I cannot quite see how you get that to 5 and a half months?

When ppl are on maintenance chemo under my onco it is common for them to have 6 months on and 6 months off, so in that sense you would be OK with a gap like that, as though operating under that regime.  I have not heard of many ppl having continuous chemotherapy .. tho ...  NB I am just a well-meaning amateur not at all medically trained!  

Bearing in mind that surgery is the gold standard treatment, and that the surgeon wants radiation to increase his chances of getting good clear margins and removing the whole thing, you have to see that as a good plan.




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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Brian
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« Reply #2 on: December 01, 2012, 10:15:46 AM »

Evie, welcome!  It's sometimes hard for us to keep things in perspective when we are in 'panic mode' - which is quite natural in the circumstances. And that state of mind prevents us from taking a measured view of the situation and we can easily miss the messages we are being given. That becomes an even worse scenario when the messages seem to be contradictory, as in your case!   But the fact is, your MDT know your situation, so it's hard for us to understand the reasons behind their apparent decision.  For example, an acceptable time between chemo and surgery (which is the first question you pose)  is dependent on how your body reacts, and though we can sometimes say we feel OK, blood results can tell a different story and poor blood results prevent healing.  Suze makes an excellent point - as always - when she says that no-one seems to have explained things in a way that answers all your concerns. You have to tell them that.  They have to know that you are struggling to understand.  I sincerely hope that people are listening to you at the hospital. My suggestion is that you ask for a face-to-face appointment to try and get a better grasp of what is going on.  Take a friend with you who can make notes and chat about it once you get home. It feels as though you need some extra support at this difficult time; don't be shy!  Ask for it.  Healing and peace.  B
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louisah
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« Reply #3 on: December 01, 2012, 06:10:09 PM »

Hi Evie,

I have to echo what others have said, in that this is a complex case and it is impossible for me to really understand what your team's rationale is. 

In terms of radiotherapy, the chemotherapy which is normally given with it is a small dose and is not really enough to treat the rest of the body.  It is given to sensitise the tumour to the radiotherapy rather than anything else.  I haven't really heard of patients having full dose chemo at the same time, and this is something you would need to check with your oncologist.

Before surgery, there is a gap of several weeks after chemotherapy or chemoradiotherapy, in order to allow the body to recover enough for surgery.

I understand your concerns, but it is very positive that you are now being offered surgery.   It sounds like good advice to ask for clarification from your team, and after that just try and hold your nerve.

If I haven't understood your question, and you would like to talk more about it you could call on Monday morning.

Regards,
Louisa
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Louisa
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Evie
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« Reply #4 on: December 02, 2012, 12:21:54 PM »

Hi Brian and Suze, thanks for your replies. The timescale Suze, is because i finished the last round of chemo on 5th Sept. 5 weeks of radiotherapy will start I think w/c 10/12/12, then they said I would have to wait another 5 weeks before being scanned then another 3/4 weeks before potential surgery. Sorry I made a mistake in the last posting, it is the liver mets that are no longer showing. The lung surgeon will only operate providing the mets remain stable, and if they don't the bowel surgeon won't operate. What I'm so very cross about is that I had a CT scan on the 17th Sept, results on 9th Oct which were good, MDT had said yes to surgery. So why didn't they start radiotherapy then? It could all have been done by now, and at least I'd have a chance. Now I feel like they are just going through the motions because they realise they should have done it well before now. Sorry if it sounds like I'm throwing my toys about.
I will ring the nurses Louisa thankyou. 
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HeatherL
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« Reply #5 on: December 02, 2012, 01:45:29 PM »

Avie don't you feel apologetic, come here and vent  Smiley It has been a long time for you, and many here can tell similar stories. i live in Spain and I waited 3 months for surgery and every day of that 3 months was fraught with worry, anger and even loss of hope. So hugs eh?
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Brian
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« Reply #6 on: December 02, 2012, 02:19:54 PM »

I echo what HeatherL says Evie.  If you can't throw your toys out amongst friends who won't take offence, where else will you go to let off steam? It's partly what we are here for. I'm sending you 'smoothing brow' thoughts, healing and peace.  Stay strong.  B
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Every now and then beautiful angels appear cleverly disguised as ordinary human beings.

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The kindness we show and the love we give keep changing the world long after we leave it behind. One well-lived life makes a difference forever.
wikey
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« Reply #7 on: December 02, 2012, 02:45:51 PM »

quote ""So why didn't they start radiotherapy then? It could all have been done by now, and at least I'd have a chance. Now I feel like they are just going through the motions because they realise they should have done it well before now. Sorry if it sounds like I'm throwing my toys about. ""

 i think Evie you shoudl pluck up corage and put this question to the MDT  see what they say, tell them you want them to be honest with you if that is what you want .. and see what happens...i

best wishes
mikey   
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suze
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« Reply #8 on: December 03, 2012, 09:10:34 AM »

I see, part of the time is the time which seems like shilly-shallying.

It must be awful for you wondering about this.

As Brian says, if you cannot vent in here, where can you?

I also rather like Wikey's idea of asking the MDT directly.  You've made most of the points in here already so it wouldn't take you long to cut and paste them into a letter, in which you ask for a WRITTEN response.
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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
Evie
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« Reply #9 on: December 03, 2012, 01:38:41 PM »

thankyou all for your replies. I have done something constructive today, although pushed into it by hubby, but he is right. We went to my GP's and vented our concerns. He suggested that we forward him some of the emails I've had from hospital together with all our questions and he will take responsibility for writing to the team directly. Although, whilst sitting next to his desk I happened to see a letter from the hospital addressed to my doctor with the conclusion that although they are proceeding with radiotherapy it is unlikely I will ever be resectionable. Nice eh? 
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Brian
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« Reply #10 on: December 03, 2012, 02:19:50 PM »

First of all, well done for taking that all important step, whether pushed into it or not!  At least you have a semblance of control and your GP is going to advocate for you, which is excellent.  As for the letter, did you get the chance to discuss this with your GP today?  Do you not request a copy of all correspondence when you go for your appointments?  I do, and have to say that the hospital have been excellent at sending them to me.  I use them as a prompt at future doctor and hospital appointments.  Let's hope that now you have come this far and been heard, the information which is to come will help you move forward. 
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Every now and then beautiful angels appear cleverly disguised as ordinary human beings.

Alone we can do so little. Together we can do so much.

The kindness we show and the love we give keep changing the world long after we leave it behind. One well-lived life makes a difference forever.
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