CSN Login
Members Online: 1

You are here

Did anyone's cancer spread quickly. I need to find just one living person who had this experience

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Couldn't sleep so I'm up researching. Tethering seems to have nothing to do with curability. You can still be cured if you can get tethering cancer just like untethered cancer. But spreading quickly, no one seems to live beyond 18 months. At least not those online. And I know that the only ones who generally post are those whose treatment isn't working. It would just be nice to actually hear from someone whose cancer grew quickly that they are alive in just 18 months. I'm really starting to think for my meeting today. So this radialogist decided that we should do chemo, no rad for 4 months and then chemo/rad. Everything I'm reading online says rad. is successful when used preop. Okay so my surgery is delayed now 5-1/2 months due to 4 months just chemo and then 6 weeks chemo/rad. It seems to me it would make more sense to do rad/chemo upfront. This doctor says a study in Australia showed that chemo, then chemo/rad was sometimes more effective when cancer was moving quickly. Am I supposed to have faith in a study? What if I'm the one in the study who it didn't help and we let it keep going. I would think it would be more logical to do the rad upfront for a longer period of time and not take a chance. Maybe I'm not understanding exactly what the radiation is for. I've also decided to put together my own team. I'm recruiting my family to step in and think of things I'm simply not thinking of. I'm such an outside the box thinker and yet with this, I'm not being enough of one. Even on the boards people say why don't you . . . and I think wow that's just common sense.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

While the Internet can be a wealth of information, it's also just a bunch of stuff at times.
It can be helpful to gather general information but looking for specific info can make one crazy. Everyone thinks they're doctors at times. How old is the data you've found Helen? You talk about Austrailian studies and ask if you're supposed to have faith in studies. They're studies, not guarantees. People often let their faith lead them when there's no medical data involved at all.

One thing I have discovered years ago is that very often when people get better they don't want to know cancer. That's fine but it would be nice (and I think I owe it to others) to provide useful information...
Good luck today.
-p

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi Helen. I don't have answer for you but wanted you to know you are not alone. My cancer is now in my lungs and is now progressing rapidly. They are going to do aggressive chemo. From there we will take it one step at a time. I am like you seeking answers and wondering why I have heard worse stories and people are fine and wondering what they did so I can do the same. My doctors haven't given me hope. I know this answer hasn't helped but just know I'm thinking of you and praying for us both.

Vicki

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

That's my whole point Phil, they're treating me based on a study. I don't want to be an experiment. I want to follow protocol that has worked. I mean none of it is guaranteed by why are we breaking the norm based on a new study. And of course the medical oncologist is on vacation this week.

I've been catching on to check the date on the posts/articles. One was 1996 so I didn't bother to read it but the others were 2010 and later and not one person lived when adenocarcinoma grew at an excellerated rate. I just need to find that one person. Get a hold of some statistics. Something that lets me know how I should deal with this with my kids who now know about the cancer itself but not much more because I can't tell them much more myself.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

That's my whole point Phil, they're treating me based on a study. I don't want to be an experiment. I want to follow protocol that has worked. I mean none of it is guaranteed by why are we breaking the norm based on a new study. And of course the medical oncologist is on vacation this week.

I've been catching on to check the date on the posts/articles. One was 1996 so I didn't bother to read it but the others were 2010 and later and not one person lived when adenocarcinoma grew at an excellerated rate. I just need to find that one person. Get a hold of some statistics. Something that lets me know how I should deal with this with my kids who now know about the cancer itself but not much more because I can't tell them much more myself.

swimmer22
Posts: 60
Joined: Oct 2011

When I was diagnosed in December 2010, I had metastatic (to lung) rectal cancer. I began with 6 Folflox treatments, followed by 28 days chemo/radiation. I had my lung nodule removed via VATS and I had a complete pathological response to my rectal tumor. I had a lower anterior resection to remove the scar tissue from the original rectal tumor and local lymph nodes. Pathology showed no cancer cells in the scar tissue removed or in the lymph nodes.

I completed 12 adjunctive Folfiri treatments and am having my temporary ileostomy reversed this coming Tuesday. All pet scans since surgery in show NED. I realize it could easily return; however, wanted to let you know there are success out there. Today, I am living my life just like I have for the past 48 years! Wishing you the best.

danker
Posts: 1253
Joined: Apr 2012

The best of luck to you on your upcomming reversal. Even with complications, mine turned out OK. Now 2 years NED and on 6 month cycle. You will do fine and return to normal life.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

My surgeon described my cancer as 'frightfully aggressive'. My tumour was not that large ,he only took 13 lymph nodes in the field he removed. The cancer had raced thru 6 of the thirteen nodes and he admitted another week and he may not have gotten it. He gave me little or no chance of survival. His exact words were too many lymph nodes,too aggressive,I'm afraid it will get you,if there is something you want to do,do it now.
Fourteen and a half years later I am still trying to remember what it was I wanted to do.Just go with the flow and do what needs to be done and trust Australia. Ron from downunder.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Thank you Ron, you're the guy I'm looking for. Okay so it has been done. Because EVERYONE on the internet who has aggressive adenocarcinoma can't post for themselves and has a loved one posting the "news". Mine is also being frightfully aggressive. I just took first round of chemo, will have infusion later today. Did they do chemo for you for 5-1/2 months first? I feel like that is begging it to continue spreading. I would rather have done the chemo/rad first like we planned. Doctor says no. Australian study (with a hospital Sloan seems to buddy with in Australia, it would be funny if it is yours) says this is better. The docs were visiting from Australia so I got to meet them. BTW, I officially love you Ron! More than you'll ever know.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

My cancer was colon . I did not have the option of radiation ,colons are hard to target. I was started on chemo three weeks after I got out of hospital. I had the full incision from sternum to groin. My surgeon said he even felt my liver with his hands he was so sure it would have mets. The chemo I started on ,5fu//leucovorin nearly killed me my reaction to it was so severe,literally non stop diahorreah. I was changed to an old regime of 5fu and levamisole weekly from jan to late nov 98. I have had so many scans since that I glow in the dark and with colonoscopies ,at one stage I suggested they just lay down a track and park the rotten thing somewhere in there. I have had quite a few polyps removed over the years but still remain ca free. For the first time in my life I am out to 3 yearly scopes. I do believe that the more aggressive the ca the higher the impact chemo has on it. Ron.

ryckej1's picture
ryckej1
Posts: 29
Joined: Jun 2012

Hi Helen321
Although my story is not exactly like yours, the one thing I would say is listen to your instincts and be aggressive!! I know that sounds like common sense, but I think it is helpful when you hear it from someone else. I know that I wanted the surgery as soon as possible. I wanted it out of me. Good idea getting a team together. I know my family was huge in helping me kick cancers a#%!!
My oncologist is the same age as me, and we both had the same aggressive attitude towards treatment. I think that this helped a lot with communication and decision making. I could tell that he wanted to beat it as much as I did. The road sucks, and life is messy. I am praying for you and know that you will make good choices!!
Jeremie

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I wish I had answers for you. Based on what I have read from others here the last 2 years it seems some do surgery first, some do chemo first, some do a combo of chemo and radiation. It seems that radiation is used to target the tumor and shrink it in preparation for surgery. There are times when the tumor is too large to resect and get clear margins successfully without shrinkage first. Chemo seems to be used to slow or prevent spread and perhaps kill off smaller mets.

I want to add another thought here for consideration. I know how concerned you have been about your job and being able to work as much as possible during treatment. I suspect you have also shared this with your docs. Make sure that they are not taking that into consideration when making their plans for your treatment! If things are as agressive as you have been lead to beleive then that concern should not be a factor. Right now you want to do what will keep the cancer under control and allow you to have surgery.

I hope that Winter Marie will chime in here as she is one who was told she had little time left and surgery was not possible, but responded so well to treatment that she got the surgery and is still around long after her 'expirey' date.

Hugs and prayers that things will turn around and you will see great improvements soon.

Marie who loves kitties

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

That was our original plan. Chemo/rad. This doc changed it to 4 months chemo. Then 6 weeks chemo/rad. I have this feeling that we should do chemo/rad first. I understand that needs to be done just before surgery. Maybe I'm not understanding things correctly. My understanding is chemo shrinks tumors, rad stops them from spreading. Am I missing the big picture? Because mine are spreading unusually fast and I want to stop the spread. Maybe I misunderstood and chemo also stops the spread.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

That was our original plan. Chemo/rad. This doc changed it to 4 months chemo. Then 6 weeks chemo/rad. I have this feeling that we should do chemo/rad first. I understand that needs to be done just before surgery. Maybe I'm not understanding things correctly. My understanding is chemo shrinks tumors, rad stops them from spreading. Am I missing the big picture? Because mine are spreading unusually fast and I want to stop the spread. Maybe I misunderstood and chemo also stops the spread.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

A number here have had sobering moments, like "...17 months. I'm sorry" (first interview on my wife) or rapid changes in monitoring. Certainly a wake up call to get serious. These time estimates are built on diagnostics and treatment assumptions for historical median patients. Treatment vary and are changing. You want an extra edge or two, with new techniques and pharmacology, to create major opportunities.

The medical teams confront two major problems, eradicating existing macroscopic tumor masses and stopping metastasis. Earlier is better. Conventionally, the huge limitations are the maximum tolerabilities of treatments, both the rest periods within the treatment cycles, and tx stoppage after fixed cycles, progression (sometimes too soon), or bodily endurance limits.

Probably the easiest is to get are some biomarkers and direct treatment add ons, like cimetidine, beta glucans, COX2 inhibitors like celebrex, and targeted, more natural inhibitors, as applicable and supervised by knowledgable medical providers. Radiation choices may vary. Extra surgeries over several years may help, especially if you can limit metastasis now.

We worked with alternative providers with real credentials in addition to the conventional medical providers to integrate the treatments.

danker
Posts: 1253
Joined: Apr 2012

Why don't you just cool it. Believe the docs at Sloan and just follow their advise, Don;t drive yourtself crazy. trying to predict the future.
Just take it a day at a time and don't be afraid. Assume all will go well. You are in my prayers.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I think we all have the I can't sleep, my brain is racing, I have to find something to get rid of this cancer so I can get back to living my life. When I had my first appointment after surgery with my oncologist I said to him "well colon cancer is slow growing isn't it?" He replied they had evidence mine was very aggressive. I suppose the pathology showed that. I have not had, so far, the rapid progression that they anticipated. I emphasize the SO FAR, all we can do is go scan by scan. Doctors cannot predict how your cancer will respond to chemo. or radiation. What works wonders on one person, may not work at all on another. I always figured radiation went in and fried cancer....I was shocked to find sometimes radiation has absolutely no effect on some cancer cells. I think your oncologist is going after killing the microscopic stuff you absolutely cannot see, along with shrinking the visible cancer.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Hey Leena, I am having the rapid progression so I need to know what they're doing and they're not there until Monday, so I can't get answers. I never heard of a hospital that says sorry we can't answer the question about the medication you're taking, you'll have to wait a week for that answer. I'm going there tonight, I'll find someone to answer my question. Heck, I would have taken a resident.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Because their diagnosis is not making much sense. None of this has made much sense. The two surgeons know each other. So I think doc two is just not willing to say, doc one screwed up and misdiagnosed completely. I would LOVE for him to have screwed up. That means it didn't grow back, break through the wall, go into my lymphs and enter the pelvic lymph all since May. I really would like to know what I'm truly dealing with. A screw up or actual aggressive cancer. And if it's aggressive, has it been diagnosed wrong and is it really adenocarcinoma or aggressive cancer? That is very different. Sloan never even did their own slides or tests. Which at the suggestion of the board, I'm going to ask for biopsies for the lymph nodes. Sloan should have suggested that in the first place. I shouldn't have to figure it out. They are so all over the place. Getting answers takes so much time. I had to wait 5 weeks to get in. Walked in as stage one and now at week 6 I'm stage 3? My whole "team" is on vacation this week. I just called to ask my questions and was told I have to wait a week. The covering doctor does physical visits, not questions??? All you get to talk to is nurses. I'm just going to call Montefiore and get an opinon. Hopefully they'll take me quickly. I did however start the treatment. You have to start somewhere.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Because their diagnosis is not making much sense. None of this has made much sense. The two surgeons know each other. So I think doc two is just not willing to say, doc one screwed up and misdiagnosed completely. I would LOVE for him to have screwed up. That means it didn't grow back, break through the wall, go into my lymphs and enter the pelvic lymph all since May. I really would like to know what I'm truly dealing with. A screw up or actual aggressive cancer. And if it's aggressive, has it been diagnosed wrong and is it really adenocarcinoma or aggressive cancer? That is very different. Sloan never even did their own slides or tests. Which at the suggestion of the board, I'm going to ask for biopsies for the lymph nodes. Sloan should have suggested that in the first place. I shouldn't have to figure it out. They are so all over the place. Getting answers takes so much time. I had to wait 5 weeks to get in. Walked in as stage one and now at week 6 I'm stage 3? My whole "team" is on vacation this week. I just called to ask my questions and was told I have to wait a week. The covering doctor does physical visits, not questions??? All you get to talk to is nurses. I'm just going to call Montefiore and get an opinon. Hopefully they'll take me quickly. I did however start the treatment. You have to start somewhere.

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

Helen, I know this is an understandably challenging and confusing time for you. You are doing the right thing to question and learn as much about your treatment options as possible. You seem like a very bright and feisty lady; your strong personality and preserving attitude will serve you well on your journey. As others have stated, the statistics you are reading are averages and by the time information is circulated on the web from a study or a paper it is likely outdated.

Always remember that as you read the experiences and suggestions of others on this message board who has, or cares for someone with, colorectal cancer each individual circumstances is unique. The direction that this disease takes varies ... the progression of the disease, the side effects to the chemotherapy, the responses to treatment, and ultimately longevity. There are so many factors involved in one's individual health both before and after your diagnosis that affect response to treatment. This ambiguity is especially hard to grasp when you are newly diagnosed and are seeking specifics and concrete answers.

I would encourage you to not take an adversarial role with your medical team. Now, that does not mean you do not question their role, seek answers to your questions, and be feisty when you have to be to advocate for yourself. I am just saying that they are not your enemy. I think they use the tools at their disposable to help you fight your disease the best they know how.

The doctors want to both fight your disease but also preserve your health. That is confusing but what it means is that chemotherapy and radiation are very strong and powerful treatments which must be used sparingly so as to preserve your health to be able to fight your disease.

As I understand from reading your messages you were diagnosed stage one and had a resection in March 2012 and then nine weeks later your scan showed reoccurrence and spread. This is not unlike my husband who after initial surgery had a quick recurrence not only in the original area but also had spread to simultaneously to the liver and lungs .... like you, we ask, how could this possibly happen?

Cancer cells can only be viewed by cat scans or pet scans when they are at a certain size. There can be microscopic cells floating throughout the body both before and after surgery that are not and cannot be removed by the surgery and can cause reoccurrence or mets. It would seem that both in your case, and my husband's, that microscopic cells were present that could be seen and thus not removed that resulted in your reoccurrence. When tissue is resected during surgery the margins are tested until they are clear and this is how they deem they have resected enough. I feel through you research you are undoubtably aware of this and forgive me if I am being too simplistic in this explanation.

My husband had recurrence after his stage one diagnosis and it quickly became stage four with mets to his liver and lungs after his initial surgery. Has he lived longer than 18 months? YES! He is now in his 31st month since his recurrence and mets. He has been having chemotherapy, with some breaks, the entire 31 months. He is 71 and has worked the entire time just retiring this past month. His blood work and vitals have remained good and so has his quality of life.

Helen, you can do this. Trust yourself, but also trust your medical team. Hang tough and breathe.

here4lfe
Posts: 306
Joined: Jan 2010

This is my wife's three year cancerversary. I don't know what is meant by spread quickly, so I'll just say whenever treatment stopped her tumors progressed. She has never been ned and in Feb the oncologist told her here was no more chemo to try. Now it's July, her SIR Sphere doctor told her he'll check her in 3-6 months to see how well the treatment worked. There is a way to live with cancer.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Thank you, you actually just answered my question! Your simplicity was exactly what I needed because all I've been getting from Sloan is "it's very aggressive". Over and over, "It's very aggressive". When I ask questions the answer is always we don't know if it's new or old. They just won't say that it is possible another hospital didn't catch something even if it wasn't their own doing but a scan that couldn't pick it up. I actually feel better. That's two people that have the same issue. I just needed to hear that this happened to someone and they're alive to tell about it. The stats I am reading for aggressive progression are actually very recent and not good. 18 months average. I'm 42 with three kids and about to be a grandma. Those stats blew my mind. Started my chemo. Checking out for the week from the board. My head hurts more than when I signed on this morning=) Thanks for the info and for the actual answer to the question.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I can hear the fear in your "voice" and I'm so sorry for it. I remember all too well what that felt like. I have a very aggressive cancer, and I'm still here three years out and doing very well, so it can be done! My tumor type is so unusual (esp in the colon) that my doctor had absolutely zero information to go on, not even a single study (there are only about twenty documented cases worldwide). I've had multiple node involvement, as well as several tumors in the small intestine, rectum and uterus. So i guess i just want to reassure you that even with a quickly spreading cancer things can be ok. I do think things will feel more positive once treatment starts (whichever plan you go with) and you are actively fighting this beast. Hugs-Ann

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

First fear, now frustration. I'm looking for Sloan to give explanations, not just say hey this is what we're doing. Why do I have to come to the board to find out that it can be in your lymphs for a long period of time and not get picked up by scans.They just keep saying over and over "it's very aggressive". That is not answering my question! At our next meeting I will say add a note to your chart, none of you should say the words "it's very aggressive" unless it's followed by "but this could be happening because". Add to that the whole team is on vacation this week and my question has to wait until Monday bc the fill in won't answer it. Well someone here just did. I was just looking for people who had this situation. You make three and you're all past 18 months so now I can relax, get off the boards and eat my soup=) Thank you.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Last summer my oncologist was on vacation, another young female onc. saw me, she was quite short with me it's in your lymph nodes so sorry, you'll have to stay on chemo. I think I was asking about a chemo. break or something. But, her attitude was too bad. Actually she brought up about scanning me more often than the three month schedule my onc. was doing. I said, you can do that??? The next set of scans and onc. appt., again my usual oncologist was not there, and I saw again a different oncologist, I was feeling the fatigue and he lowered my chemo. to 75%, what a huge difference it made immediately, not only on the fatigue but also the burning butt issue. Anyhow,3 different oncs., all three within the same facility, treating it differently.

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

I feel your panic. Wish I could help. I personally know a woman who had aggressive stage IV colon cancer 14 years ago and she is cancer free now, has been for many years. They are out there - MOST people do not come on these boards, the people here are a small sampling of actual patients. THANK GOD they are all here, but many cancer patients are not, are nowhere to be found on the internet. My daughter certainly isn't on here researching her cancer - I'm the one doing it. Friends of mine were the same way - put their trust in their doctors and thought about the cancer only when forced to.

One thing to keep in mind as you enter your treatment - rapidly dividing cells ("aggressive," "poorly differentiated," "high grade," etc.) often respond very well to chemo. Rapid cell division = rapid cell death. Happens a lot. One oncologist told me years ago that sometimes the slower growing cancers are more resistant to chemo.

So try to think of your "aggressive" tumors spending all their energy on reproducing so they'll have none left to resist the chemo and it will be BAM! (as Emeril says) to those nasty cells - instant DEATH - and your bloodstream will wash them out of your body. Visualize that! Can't hurt.

Best wishes to you.

Sandy

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Nicely put! I never thought of that! Thanks Sandy. I try to visualize them dying when I take the meds. It works better with the IV than the pills.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Nicely put! I never thought of that! Thanks Sandy. I try to visualize them dying when I take the meds. It works better with the IV than the pills.

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

Nicely put! I never thought of that! Thanks Sandy. I try to visualize them dying when I take the meds. It works better with the IV than the pills.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I can relate to your thoughts. I am the same way.. you want to be prepared..
Though Danker is telling you to go with the flow.. I don't think I disagree..
You could be making yourself sick over this..

Over analysis causes paralysis..

I am with you dear .. do all the research you need to do. but please try to weight it with what your docs are saying..

My cancer was rectum .. I did the chemo/rad then surgery than 12 cycles of FolFox.. my colon is clean- now I have mets and doing Folfiri and Vectibix..

Was mine agressive.. no one ever used that word but to me it was I had a pet CT in 2009 and there was nothing there.. than a year later in 2010 I had a stage 2/3 rectal cancer hmmm kind of strange..

Helen, I hope you find your answers and peace.. and please let us know what goes on..

You were goig to Montefiore for a 3rd opinion.. did you go yet.. what did they say?

Hugs... Donna

taraHK
Posts: 1961
Joined: Aug 2003

Others have given very useful comments. Just a thought from me: I think of radiation as zapping an individual tumour -- reducing the size or hopefully completely eliminating. I think of chemo (which is described as 'systemic') as attacking multiple tumours (if one has them) -- and also attacking the micrometasteses (sp?) which may be floating around one's body (unfortunately!). I don't know if that is helpful at all....

That being said, I think 'enrolling' your family to explore options/do 'research' is a great idea....

Tara

omrhill
Posts: 125
Joined: May 2012

Helen - we can feel the frustration in your posts. And your search for answer. Ifi can make a recommendation? Approach your doctors with your list of questions rather than accusations. I suspect that they are not withholding info intentionally but may just not be able to anticipate all the questions you will think of between appointments. I know for me there was so much to learn at first it was impossible for me to even know what to ask. Also ( and i think someone earlieer said it really well) the doctors are your best resource for info about your specific condition. We love you and want to help, but our first response may be to boost you up and tell you only what you want to hear. Having confidence in and trust in my medical team gives me hope and rest. In the end, if you really don't have that, perhaps you should consider finding someone you can trust.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

so what did i learn, well heaps, but the most important thing for good living for me now is a
good nights sleep.

thats asleep before 10pm, what you learn from the net, from us here, from your medical doctors , just sit on it a while and trust your intuition. thats the only advice i can give, its what i am doing.

its great to get buried in the detail of our cancer, but sometimes its better for me to step back, a few steps and take in the big broad picture of how wonderful our life is, yes its precious and the guarantees well i lost mine when i got dx'd.

so step back and smell the roses, make your decisions. we all have a lifetime of moments, hopefully heaps of moments with lots of love. make the best decisions you can and be at peace with them, no regrets. i don't and i have made a few mistakes on my treatment path.

if the study is from australia it must be blooody fantastic, thats all i can say. we are so smart down under.

many replies here have addressed the details of your question, i however want to point out the obvious. you are the person you are looking for.

hugs,
pete

ps i hope you have your beautiful smile happening when you read this! hugs!

Subscribe to Comments for "Did anyone's cancer spread quickly. I need to find just one living person who had this experience"