Were You Told Your Odds of Cure Before Starting Treatment?

Kim Gaia

I have not yet commenced treatment (apart from some naturopathic treatments I am doing).

When I met with the radiation oncologist last month and asked him what my likelihood of cure was from chemo-radiation, he gave me several scenarios. But basically, the most realistic scenario places my likelihood of chemo-radiation being curative at 35-45%. In other words, I am more likely to NOT be cured by chemo-radiation. And if chemo-radiation is not curative, then the surgeon has assured me that salvage surgery (APR w colostomy) in my particular case will not be curative either. I will then essentially be classed as 'terminal' by the cancer agency in my province of Canada, since they will be out of treatment options for me.

This is what it making it so hard for me to go forward with chemo-radiation and why I am pursuing alternatives so aggressively right now. (I am investigating immunotherapies and alternative cancer treatments that seem to hold merit). I don't believe chemo-radiation will cure me. But it is guaranteed to leave me with permanent irreparable damage, and a weakened immune system. And if it is not curative, the cancer that remains will be more agressive, faster growing, and more resistant to treatment. (https://www.webmd.com/cancer/news/20080610/treatment-can-make-cancer-stronger#1)

Have any of you been given your individual odds on likelihood of cure before starting this treatment? (I don't mean the odds of cure for general population of patients with anal cancer - those odds are higher.) And if you were given individual odds on cure lower than 50%, how did you handle that psychologically. How were you able to proceed when there may be better alternatives that give you better odds?

kim

 

 

eihtak

Kim...

Hi,

If I was given individual odds I don't remember and I was told not to rely too much on general stats as there are so many things to factor in. I guess, for me, even being dx at stage 3b and severely anemiac, I never considered not getting well...I was not aware of this site and infact did little of anything on line at the time. Maybe that was good.

Since being dx over 7 years ago my tech skills are much improved. A few years ago I went back to college and have since graduated. I had no choice but to become familiar with internet searches if I was going to make it. I skimmed the link you shared from WebMD but did not read it fully mostly because I have heard too many times to be mindful of reliable sources. While WebMD does often give general legit information, it is best to search reputable research from well known cancer centers that specialize in the areas you question. Its also interesting to read through recent peer reviewed journal articles on specific topics.

I may have missed some background information that you shared...what stage were you dx at? We all have particulars that make our case unique and I am sorry that your doctors have given you the percentage of cure likelihood they have. I'd like to say "don't believe them" but thats something you just do or don't. Is it possible for you to get another opinion?

Its true that there is some degree of long term (maybe permanent) damage, but like all else it varies from person to person and some have very little. Keep in mind that when people are doing well, they often don't take the time to post on discussion boards and the majority of posts will be from those facing a challenging time, so it gives the feeling that the odds of a good outcome are rare. Thats just not true! As far as the weakened immune system, yes for a bit, but then it rebuilds back up. I do hope you will be here posting encouraging words for others many years from now as one of those success stories...I think you can be!

katheryn

Kim Gaia

Thanks again katheryn. You

Thanks again katheryn. You make some very good points. I have consulted another oncologist - but really just about the prospect of immunotherapy drugs, not for a true second opinion on my odds of chemo-radiation being curative (or not) in my case. I am inclined to believe the Cancer Agency oncologists I have spoken to (who gave me the odds, at my request) because they are the ones in my province with the experience treating this cancer with chemo-radiation.

My stage has not been confirmed because i have not yet had PET Scan. So indeed my odds could turn out to be better than expected. But every doctor I have spoken to so far (maybe 4?) assumes there is lymph node involvement, which would put me at stage 3 (in conjunction with other factors). The odds I was given in that scanerio were: 40-50% likelihood of cure, if I can do full course of agressive chemo with the radiation. But mitomycin has already been removed from my schedule because of my chronic lymphocytic leukemia. And that shaves another 5-10% off my odds, according to chemo oncologist. So I am looking at 35-45% at best, less if I lose some of the Capecitabine as well due to falling neutrophils while on treatment, which is always an issue with me.

kim

Ohmy

Hi Kim,. I was told by my

Hi Kim,. I was told by my chemo oncologist that stage 3 is curable.  The doctors never discussed survival rates.  I looked it up on the ACS website.  The 5 Year survival rate for stage 3 is close to 60 percent.  Then I read those statistics are from five years ago and do not take into account people who died from other things. The 5 year survival rate may actually be a little higher.  So here I am a year after treatment feeling pretty good.  Taking some trips to see my Granddaughter.  I guess I have always been an optimist.  I have good insurance and I plan on sticking around for awhile.  The treatment was short and I went back work this week last year.  What's the alternative?  You need to put on your big girl pants on, I recommend boxers, and decide on your treatment.  

Kim Gaia

Ohmy said:

Hi Kim,. I was told by my

Hi Kim,. I was told by my chemo oncologist that stage 3 is curable.  The doctors never discussed survival rates.  I looked it up on the ACS website.  The 5 Year survival rate for stage 3 is close to 60 percent.  Then I read those statistics are from five years ago and do not take into account people who died from other things. The 5 year survival rate may actually be a little higher.  So here I am a year after treatment feeling pretty good.  Taking some trips to see my Granddaughter.  I guess I have always been an optimist.  I have good insurance and I plan on sticking around for awhile.  The treatment was short and I went back work this week last year.  What's the alternative?  You need to put on your big girl pants on, I recommend boxers, and decide on your treatment.  

I am already pursuing

I am already pursuing treatment alternatives, some of which I have already discussed here on this forum. Your "advice" about putting on my big girls pants is neither helpful nor appropriate nor even informed. Everyone's situation is different. I am not looking at 5-year survival rates for general population with AC. I am talking about the likelihood of me specifically, in my unique situation with my particular comorbitdities, being cancer-free after chemo-radiation, not five years out. My odds are less than 50%, possibly quite a bit less. There are other alternatives, whether you are aware of them or not. So it is by no means a simple decision of "putting on big girl pants" as you so flippantly suggest. If chemo-radiation is not curative in my case (and odds are it won't be - unless you are saying you are more knowledgable than my radiation oncologist), then I am in a MUCH worse situation with much more trauma to my body, and much less likelihood of alternative treatment paths been successful than I would be if I forego chemo-radiation (and its low odds of success for me) and pursue other treatments now for all I'm worth, while my body and spirit are strong and the cancer is not moving quickly. Cancer that survives chemo-radiation is faster growing, faster spreading and more resistant to treatment. Conventional medicine has nothing further they can offer me if chemo-radiation fails in my particular case, and I would be shifted to palliative care. This too comes from my specialists, unless you think you know more than they do. Hence my current pursuit of alternatives. It is a very tricky calculation I must make - a calculation where flippant remarks have no place.

kim

eihtak

Ohmy said:

Hi Kim,. I was told by my

Hi Kim,. I was told by my chemo oncologist that stage 3 is curable.  The doctors never discussed survival rates.  I looked it up on the ACS website.  The 5 Year survival rate for stage 3 is close to 60 percent.  Then I read those statistics are from five years ago and do not take into account people who died from other things. The 5 year survival rate may actually be a little higher.  So here I am a year after treatment feeling pretty good.  Taking some trips to see my Granddaughter.  I guess I have always been an optimist.  I have good insurance and I plan on sticking around for awhile.  The treatment was short and I went back work this week last year.  What's the alternative?  You need to put on your big girl pants on, I recommend boxers, and decide on your treatment.  

Oh my...

Hi, 

Having an optimistic attitude sure does help! (Sometimes when in the midst of things so hard to find though)

I agree on the stats, they're usually not up to date as things change so fast and are so easily skewed so best to take with a BIG grain of salt, lol.

Everyone here has their particular situations and factors that affect treatment and outcomes, yet here we are, same dx. I sometimes picture it as rather than being in the same boat, we're all in our own boats but on the same lake...I so wish there was a one size fits all cure for this nasty thing and pray that one day there is not even a need for sites like this.

Glad to hear you are doing well...

ps (Aren't granddaughters the best medicine for the soul!!!) I just returned from aweekend with mine!

katheryn

eihtak

Kim Gaia said:

I am already pursuing

I am already pursuing treatment alternatives, some of which I have already discussed here on this forum. Your "advice" about putting on my big girls pants is neither helpful nor appropriate nor even informed. Everyone's situation is different. I am not looking at 5-year survival rates for general population with AC. I am talking about the likelihood of me specifically, in my unique situation with my particular comorbitdities, being cancer-free after chemo-radiation, not five years out. My odds are less than 50%, possibly quite a bit less. There are other alternatives, whether you are aware of them or not. So it is by no means a simple decision of "putting on big girl pants" as you so flippantly suggest. If chemo-radiation is not curative in my case (and odds are it won't be - unless you are saying you are more knowledgable than my radiation oncologist), then I am in a MUCH worse situation with much more trauma to my body, and much less likelihood of alternative treatment paths been successful than I would be if I forego chemo-radiation (and its low odds of success for me) and pursue other treatments now for all I'm worth, while my body and spirit are strong and the cancer is not moving quickly. Cancer that survives chemo-radiation is faster growing, faster spreading and more resistant to treatment. Conventional medicine has nothing further they can offer me if chemo-radiation fails in my particular case, and I would be shifted to palliative care. This too comes from my specialists, unless you think you know more than they do. Hence my current pursuit of alternatives. It is a very tricky calculation I must make - a calculation where flippant remarks have no place.

kim

Kim...

Hugs....

You certainly do have a unique situation and often when such is the case we need to be our own advocates and research all possibilities as well as hopefully trust the educated advise from our doctors. 

(I have found that when talking via text and not face to face we have to consider the fact that comments are too often misunderstood. Wouldn't it be great if we could all meet in person to share our experiences and help each other. I really do think no one here ever intends to be hurtful to another member...this is just so **** hard for all of us really.)

Anyhow...I am so interested in learning more about alternative treatment myself. As I had said once before, because I have been treated 3 times now (2 different cancers and one mets) although it has not been said, common sense tells me my conventional methods of treatment are quite limited if I should need any in the future. I want to learn what I can now, while I feel healthy and well so I'm not scrammbling for info if/when I'm not! 

I wonder what your odds would be if you were to receive targeted radiation (less surrounding field damage) but replace chemo with an alternative??? 8 years ago my husband was dx with multiple myeloma (a blood cancer). His initial treatment was a stem cell transplant but he had unsuccessful results and a year later had a full bone marrow transplant with his brother as a donor. He has hit a few minor bumps in the road the last few years but overall is doing pretty well. Please keep us posted as you learn more.

katheryn

Ohmy

Hi Kim,  I do apologise if my

Hi Kim,  I do apologise if my remarks seemed flippant to you.  It's just the Sagittarius in me that tends to be blunt about everything.  Of course, everyone is different and there are alternative treatments.  You are always in my prayers, as is everyone on this website.  Thank you, Katheryn for always being the voice of reason.

horsepad

I was diagnosed with stage 4.

I was diagnosed with stage 4.  The cancer had spread to my lympth nodes and liver.  I also have auto immune decificency.  I had the ususal chemo and radiation.  Also had a liver resection which increased my odds from 12% to 40%.  I was too afraid to try any non conventional treatments.  I wanted to make sure the cancer was killed fast..  That was 7 years ago.  I am doing great!

Kim Gaia

horsepad said:

I was diagnosed with stage 4.

I was diagnosed with stage 4.  The cancer had spread to my lympth nodes and liver.  I also have auto immune decificency.  I had the ususal chemo and radiation.  Also had a liver resection which increased my odds from 12% to 40%.  I was too afraid to try any non conventional treatments.  I wanted to make sure the cancer was killed fast..  That was 7 years ago.  I am doing great!

Thank you horsepad. And

Thank you horsepad. And congrats on your success! Your story gives me hope.

kim

Nana442

horsepad said:

I was diagnosed with stage 4.

I was diagnosed with stage 4.  The cancer had spread to my lympth nodes and liver.  I also have auto immune decificency.  I had the ususal chemo and radiation.  Also had a liver resection which increased my odds from 12% to 40%.  I was too afraid to try any non conventional treatments.  I wanted to make sure the cancer was killed fast..  That was 7 years ago.  I am doing great!

Horsepad

Thank you i needed to hear this.  God Bless.

feckcancer

Kim & Ms Moxie

Hi Kim & Ms Moxie. lurker here from New Zealand. thought you may be interested in another perspective from another country . I had stage 3 anal cancer with 3 lymph nodes in pelvic area involved too. have 3 doctors, a professor surgeon with an interest in anal cancer , a specialist radiation oncologist & a chemo ongologist . i wasn't told what stage i was and didn't ask. found out afterwards from reading my notes!

2.5 years since i finished standard treatment (6 weeks radiation. chemo 24/7 1st n last week in hospital. 4 days in hospital due to dehydration. only missed one day radiation) and still see my professor/radiation oncologist every 3 months turn about. professor told me when i was diagnoised 'bad news good news you do have cancer but it is curable'. was told i had to be v tough to go through the treatment. that was my odds so i gritted my teeth and did it. never even thought about not doing as i was told.  NED 6 weeks after finished treatment. could feel my tumour shrinking after 1 week of treatment.  have a few issues but all in all not to bad and so grateful to be alive. always take my doctors bottles of bubbly to say Thank you when i go for my appointments.

booked for CAT scan as part of my follow up treatment next month . always nervy when check up time but try to stay in the moment and not think what if.

Kim & Ms Moxie. i understand your stituation is different than mine so joined this site to send you both a link you may be interested in. from my understanding the  chemoradiation treatment of anal cancer works so well in most people there is not much research going on for  alternatives to this treatment but there have been trials on patients who have reoccurences etc  (in follow up stage now).

https://gicancer.org.au/clinical-trial/interaact/

while this is an australiasian trial there are some participating hospitals in USA.

one thing to add. my oncologist told me NOT to take Vit C while having treatment as some studies are showing that Vit C might make the tumour 'heal' to quickly while they are trying to kill it. made sense to me.

Hope this helps in some way. 

Take care

love

xx

ps;feel free to  ask me anything re NZ treatment. it costs us nothing & is absolutly amazing. 

Msmoxie

NZ lurker : )

Hello and Thank you for your sharing what goes on where you live.  Just so you know... My entire career (and I am 61 years young) has been in health sciences / medicine.  Not only have I seen a lot in my personal and professional life.. ... I have ten years of being a caregiver to numerous friends and family members with various cancers and have seen 29 succumb to treatment of the cancer.  Here in the US it seems if you are diagnosed early your odds are better.  Also, with my other health issues considered ... I am NOT a good candidate for chemo (circulation problems are a major issue and I do not tolerate many common meds so there is concern there as well).  I worked with numerous pathologists and have dozens of doctors as friends and when we discuss radiation oncology ... there is too much collateral damage that continues to show the continuing destruction from the radiation treatments... beginning with the burns, stenosis, necrosis and down the road looking to have your femoral heads replaced because the radiation damages them, etc. etc.   The doctors are not forthcoming about the side effects and some deny they happen though it is documented on their own professional sites and in journals and at NIH and so on.

I am happy that you are through your treatment successfully and NZ pays for everything for you ... NICE!  They likely even use a different approach from US physicians... what I have read about Australia is different than here.  

Even our doctors agree that they MUST find a less toxic way to treat cancer.  The chemo drugs are from 1974... The research I read daily discusses amount of dose, timing of doses, days of dosing, number of doses and so on but I do not see them looking for safer pharmaceuticals... 

The newer methods of genetic testing and taking a biopsy of the tumor and producing an anti-tumor product from your cancer directly is what I am pursuing.  I fully believe in gettting my own immune system to take care of this cancer if I can get the proper stimulus to "click".  I am excited about my consultation upcoming with MSK to see what we can come up with.  I just had a PET CT scan last week and will get the report this week to see how things have gone over the past six months of palliative and nutritional care.  I am also learning more about the anti-angiogenesis foods and tweaking my diet towards that as well.  I will never forget assisting in an equine surgery at UF where a 22 pound tumor was removed from a mare and the massive size of the blood vessel feeding that tumor.  It makes sense... cut off the blood supply to the tumor and it will die.  

My tumors are directly on the sphincters so I am pursuing all alternatives to what the standard protocol is for my particular diagnosis.  The doctors said that if I go through treatment ... about half of patients survive five years... that is not very good if you ask me.  That is another reason I am pursuing all possibilities... I don't want to spend two years in treatments and recovering from treatments and many trips to doctors, hospitals and the like... to me that is NOT living.  So... my personal choice is to continue living my life and pursuing alternatives and using my tenacity and personal strengths living my life ... happy and with my family.

I do appreciate your input and wish YOU the very best in life.  Best to you and sending positive energy,         Moxie

feckcancer

alternatives

Ms Moxie ~ my friend researches at Macmillan here in NZ. it is an exciting time for them as she told me that indeed they are working on & excited about 'taking a biopsy of the tumor and producing an anti-tumor product from your cancer ' as you say but here in NZ it is to make a vacinne from your dead tumour so once your cancer is treated and gone it will stop it reoccuring in the future.

it will not stop you getting  any other type of cancer in the future. 

 nutricinal advice of the moment is tumeric, my oncologist okays it and my friend who is a doctor & hippyish insists it should be grated and heated to be effective so she grates fresh tumeric into her porriage every morning. i take 2 capsules plus have raw every day plus garlic ~ the cure all. my oncologist is happy i don't eat red meat  but did recomend iron supplements after treatment.

there is also promising research on links between lack of heat/depression may =cancer. lots of stuff going on.

apricot kernals curing  & root canels giving you breast cancer rumours are doing the rounds at the moment. those are rumours. ignore.

when i was diagnoised i asked my doctor what alternative stuff i could do to make conventual treatment work better which is when he told me about not taking Vit C. i even asked him about putting marijuana oil up my bum but was told not to in treatment due to risk of infection....unfortunalty it seems alternative is more about being preventive at the moment but one day...

i understand why you want a different route , the treatment is tough. there is a price for everything . mine is never smoking cigerettes again and livable side effects that lesson with time. for me i am grateful the price is that small, the last years have been tough & painful, don't get me wrong but worth every minute and a lesson in meeting some of the most beautiful kind people i have ever met & understanding it's not all bad. i am so grateful to my doctors for saving my life and giving me a 2nd chance. to go back to smoking would be so disrespectful to them after all their time money effort and love spent on me.it could have been so very much worse.

While I have a lot of follow up & some aftereffects it is not my life. i haven't got time for that.  7 weeks after finishing treatment i was in Bangkok having cosmetic surgury, 3 months later on a cruise in the pacfic islands, back working after 6 months, 3 months later back to Bangkok, 3 months later Melbourne..social life coming out my ears ...volunteer work ...sometimes i look back and wonder how i've done it...this gritting of my teeth and pushing through to now...but i watched my Mother slowly and painfully die as my life was given back to me. her life started to end on my 1st day of radiation. it took so long & her final 10 days just after i finshed my treatment, sitting by her and holding her hand well i haven't the words for how hard that was but it sure made my treatment seem like nothing compared to that.

i never told her i had cancer. 

hopefully there will be help for you and your PET scan is good . you must be nervous but excited awaiting the results and seeing if there are changes for the better. i am glad your doctor is on your side and as a plus if you do decide on chemoradiation in the future your body will be in as good condition as posible which will help with side effects etc .

best of luck with your results

love