From the Netherland; rectalcancer with lung mets

[Hanako]

Dear all, my name is Hanako and I live in the Netherlands. I've joined the forum because I eonder how treatment is in other countries. I am 41 years old, two years ago I was diagnosed with stage 1 rectalcancer. After treatment of 25 radiation sessions and 5 weeks of chemo pills (xeloda) I had surgery with a stoma as end result. 85% of full recovery I was told. Only with in a half year the ct scan showed spots on my lungs. Within half a year I am now stage 4 with 19 lung mets spreaded in both my lungs. My only given option is chemo. Beacause I feel the chemo will do more harm I have not started chemotherapy. I still feel good and healthy, have no complaints at this moment. Who has the same diagnosis and what treatment are you given...regular or altrnative. Thank you for your time...
Kind regards, Hanako

[orcasres]

As a stage II, I can't help you much with your questions, but someone will come along soon and join in. Welcome to the club that no one really wants to belong to. People here are very helpful and understanding. Lois

[plastikos]

Sorry to hear this Hanako. As a fellow stage IV I know it is not easy. Treating cancer is never easy. Chemo is not fun but it is the only evidence based treatment that we have for your condition as far as I know. The decision is entirely up to you but I would reconsider and undergo chemo. The drugs are better now so there is still a fighting chance. If there is a recognized major cancer center in your country I suggest you get an opinion there.

[mariane]

I think giving up chemo is a mistake. It is your decision, very tough one. I survived FOLFIRINOX, now I am on FOLFOX and even having little ones at home I am surviving it relatively well. I try to live my life as good as I can and have as much time with my family as possible. Resigning from chemo may be a serious mistake. You can have a very good response to it and gain time until cure arrives. I think you should consult lung surgeon as well. There might be a surgical option for you. I would consult more than one surgeon and more than one oncologist.

Good Luck!

[meatie]

Dear all, my name is Hanako and I live in the Netherlands. I've joined the forum because I eonder how treatment is in other countries. I am 41 years old, two years ago I was diagnosed with stage 1 rectalcancer. After treatment of 25 radiation sessions and 5 weeks of chemo pills (xeloda) I had surgery with a stoma as end result. 85% of full recovery I was told. Only with in a half year the ct scan showed spots on my lungs. Within half a year I am now stage 4 with 19 lung mets spreaded in both my lungs. My only given option is chemo. Beacause I feel the chemo will do more harm I have not started chemotherapy. I still feel good and healthy, have no complaints at this moment. Who has the same diagnosis and what treatment are you given...regular or altrnative. Thank you for your time...
Kind regards, Hanako

You better start chemo as soon as possible. If you wait until the lung mets have grown so much that you feel something, it might be too late. Are you refusing chemo because the bad side effects from xeloda?

[jhocno197]

Are your mets large enough for ablation?

[Willow.NZ]

Hi & welcome...As long as you feel fully informed & have spoken to the best oncologist & surgeons available, less chance of regrets later on. I hope you have good family and friends to support you with whatever you decide. Alternative therapies can sometimes aid feeling well, but like the others have said conventional treatment is the only chance of stabilising or curing, but this doesn't mean this is the path you have to take. Take care & I wish you peace in this time x

[Annemiek]

Hoi,
Welcome to a fellow dutchie! So sorry to have to meet you here.. did you go for a second opinion in The Anthoni van Leeuwenhoek ? Where are you being treated at the moment? Although we are in a small country, there 's a big difference in oncologists, find ine that is willing to go all the way and is open to different opinions, you need to push for agressive treatment !!!!

I also would start chemo, to slow down the growth of the lungmets, maybe it's possible to laser them later..
I got very sick on xeloda, but 5FU went okay, ask for a portacath, I know they don't automatically advice them as they feel it is prone to infctionm but I had one installed and it is way better then having all the needles in your arms...

Good luck on your journey. Keep off dr google, but look around here on the colon club they are great!!

Annemiek

LeonW is a fellow stage 4 from the Netherlands and wrote some good comments on kanker.nl under darmkanker. He's also active here

[Hanako]

Thank you all so much for replying! I do not want chemo because I don't feel it will make live better. I have a very good oncologist in Dordrecht. Before that I was treated at the Daniel den Hoed clinic in Rotterdam and I've been for a second opinion in the Anthony van Leeuwenhoek. So as far as the best information and best doctors in our country, I have visited them. The advice is chemo to prolong life, however they all say it will hopefully het me a year more than without treatment. A year ago I was given 6-9 months and Iam still here with no noticable health issues. I function like a healthy person and am Able to do all I want. I am so very afraid that chemo will change all this around. That I will get sick from the chemo and not be able to what Iam doing now. The doctors made it quit clear that i will not get better. Then why start chemo. The advice is 5fu with avastin through a portacath. The mets are to spread and to large in numbers to get surgery or radiation. Who has the same diagnosis and is undergoing chemo ...how is that working formyou? How do you feel? What is your prognosis? Thanks again... Hanako

[Hanako]

As a stage II, I can't help you much with your questions, but someone will come along soon and join in. Welcome to the club that no one really wants to belong to. People here are very helpful and understanding. Lois

Thank you Lois!

[stu]

Hi.
I do understand what you are saying, although chemo has allowed my mum to be here six years after a stage 4 diagnosis. What did come to mind was Dr Ladas in London . He trained under a German doctor and as far as I am aware are the only two doing laser surgery on the lung. You might want to investigate this just to see what you think.
My mum selects surgery where possible. I respect your decision and am glad your still in good health to enjoy life. A couple of people here have travelled to the uk and Germany so if your interested in reading further you can do a search here.
Kind regards
Stu

[Cb75]

hi,

I'm sorry to hear about your situation. I am also stage IV and have lung issues. I travelled to Germany to have surgery with Prof. Axel Rolle to have my lung mets resected. Please search my name on this board for posts about my experience. Although i have recurrence and am not in a great place right now, I do highly recommend the surgery for multiple lung mets as it gives you a chance at NED and potential cure if all can be resected with good margins.

cb <3

[Lydia666]

Thank you all so much for replying! I do not want chemo because I don't feel it will make live better. I have a very good oncologist in Dordrecht. Before that I was treated at the Daniel den Hoed clinic in Rotterdam and I've been for a second opinion in the Anthony van Leeuwenhoek. So as far as the best information and best doctors in our country, I have visited them. The advice is chemo to prolong life, however they all say it will hopefully het me a year more than without treatment. A year ago I was given 6-9 months and Iam still here with no noticable health issues. I function like a healthy person and am Able to do all I want. I am so very afraid that chemo will change all this around. That I will get sick from the chemo and not be able to what Iam doing now. The doctors made it quit clear that i will not get better. Then why start chemo. The advice is 5fu with avastin through a portacath. The mets are to spread and to large in numbers to get surgery or radiation. Who has the same diagnosis and is undergoing chemo ...how is that working formyou? How do you feel? What is your prognosis? Thanks again... Hanako

Hi Hanako,
I'm not sure I understand. How come you were given 9 months at a stage 1???
Like everyone said, i'd do the chemo. 5fu is basically xeloda which you already did. Not sure about avastin but people survive it and it helps. I understand you are scared, so am I. I had my surgery and now i have chemo waiting for me for several months and am really scared but don't see how i have a choice! All the best to you.

[musicluvr]

Same dx I got in July. Too many spots for RFA or surgery. Chemo with Erbitux, FOLFIRI was awful. Taking holiday from full treatment, only doing 5FU which is what Onc said should maintain now until next scan, hopefully mets will remain shrunken.
I have same decisions you have. Try to maintain quality of life while on active chemo is the hardest thing I have ever done.
Luckily I have a husband who supports whatever decisions I make, including this break. 5FU is awful, my fingers and toes have suffered tremendously. But fewer days feeling like crap is doable for now.
Anxious to follow your path. Feel free to ask me anything.

[Ajane]

Hanako, If I were in your shoes, I would do chemo. Having said that, I respect your decision. We've all hard decisions we must make....some of us at stage 4, it'll likely eventually come down to quality versus quantity. I think we just want to make sure your decision is an accurately informed decision and that your Doctor's are providing you with every possible option.
No two cases are alike, but like you, I was initially a stage one rectal. As of this past May, I'm mCRC. I always thought with a pCR, I'd be at less risk for a recurrence, local or distant. But obviously I was wrong about that with it showing up in my lungs.
As you can see by my signature, I did have an interim, mostly carefree NED period of 17 months from excisional surgery to a solitary tumor recurrence. I know I was so very fortunate my CEA was a good indicator and it was solitary nodule. The route I chose was UL lobectomy (because the tumor was in a bad spot). I started with CapeOx+Avastin but after two rounds switched to Folfox+Avastin. Folfox was much easier than CapeOx as it didn't keep my gastrointestinal tract upset. I completed 8 rounds before HFS began becoming unbearably painful and neuropathy worsened. Fortunately my scan was clear, so I chose to begin maintenance. It is an extremely low 200mg dose of 5FU+Avastin. Maintenance is a piece of cake. Folfox...not so much, but doable with decreases in dosages after round 1 and 3. I did okay the summer of 2013 with the six weeks of Xeloda+radiation. But I've never had a regular chemo dose of 5FU alone, so I can't offer any input there.
I hope you find the answers you need so you can make an informed decision that will lead you to the best possible outcome. Jane