Surgery a 3rd time Update
This time, I have been referred to Bernandin Cancer Center at Loyola in Illinois (close to home) and will be seeing an oncologist/surgeon next week. After 2nd surgery, I asked if I needed chemo or radiation, and that oncologist said, no, they cut it all out. Huh! Well, here I am with a malignant tumor 6 months later! Yes, I have questions for oncologist, but wondering if anyone out there who has been through this can give me some advice/questions to ask at my appointment? I have no symptoms; no bleeding, no weight loss. In fact, it's hard for me to believe I have any cancer at all. This is all so surreal right now. I'm leaning toward doing nothing right now. Maybe another colonoscopy in 6 months? I don't know what my last CEA was; my first one in April, the numbers were "within normal limits" - I am getting the results of my CEA, along with the slides from latest biopsy to take with me to appointment at Loyola (new doc requested slides).
Any advice at all?
Comments
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Dear Sis
First of all, you are doing the right thing in getting a second opinion.
I don't know anything about the center you have been referred to, but would suggest that if you ae still uncertain when you get the second opinion that you try an NCI hospital. There are 2 in Chicago. You can go to the following web site for details:
http://www.cancer.gov/researchandfunding/extramural/cancercenters#midwest
Many of our members have had good experiences with the National Cancer Institute hospitals across the country.
You only mention having had colonoscopy done. Have you had any scans (CT, PET, MRI)? These scan can help to determine if there is another source.
CEA is not always a good indicator for all people so don't assume that if it is in "normal range" there is no problem.
Please do not wait 6 more months to see what may happen. If another facility confirms that the slides from latest biopsy show cancer, please don't wait. Right now it seems that you have probably caught it early.
You mention that you have no outward symptoms. Is there any family history of colon cancer?
Wishing you best results with your second opinion.
Be ever vigilant.
Marie who loves kitties0 -
Surgery a 3rd timeLovekitties said:Dear Sis
First of all, you are doing the right thing in getting a second opinion.
I don't know anything about the center you have been referred to, but would suggest that if you ae still uncertain when you get the second opinion that you try an NCI hospital. There are 2 in Chicago. You can go to the following web site for details:
http://www.cancer.gov/researchandfunding/extramural/cancercenters#midwest
Many of our members have had good experiences with the National Cancer Institute hospitals across the country.
You only mention having had colonoscopy done. Have you had any scans (CT, PET, MRI)? These scan can help to determine if there is another source.
CEA is not always a good indicator for all people so don't assume that if it is in "normal range" there is no problem.
Please do not wait 6 more months to see what may happen. If another facility confirms that the slides from latest biopsy show cancer, please don't wait. Right now it seems that you have probably caught it early.
You mention that you have no outward symptoms. Is there any family history of colon cancer?
Wishing you best results with your second opinion.
Be ever vigilant.
Marie who loves kitties
Thank you for replying to my post. I had an MRI done after the first diagnosis. But they only concentrated in my pelvic/stomach area (at least that is how it seemed to me). I don't think I asked enough questions back then. Cancer runs in my family, but no one has been diagnosed with colon cancer. Breast cancer on mom's side: cousins, aunts, my mom
Breast cancer on dad's side: aunt, cousins. My brother had a cancerous tumor near the aeorta, as well as lungs (he was heavy smoker), died of cancer at 47. My sister has been diagnosed with leukemia (but she's 71... and it's the kind practically everyone gets?) She is monitored twice a year at this point. Nothing has advanced. I had a total hysterectomy at 36 because of testing "positive" for pre-cancerous cells. I had been fighting endometriosis for 10 years at that point, and was ready to just have it all taken out anyway. I have a long list of questions for the new oncologist. I don't know if my "primary" physician should have been more involved? I mean, we have to be our own advocates, don't we... Sad but true. It seems you go from one doctor to another; I wish you could have only one person take care of everything - at least then I would feel more confident that everything that should be known is known... follow me?
I hope you're experience has left you with many years ahead of you - BTW I love kitties too! I'm mom to 8 - thank goodness my hubby loves 'em too! They are all throw aways - we were involved in cat rescue for many years. I had to stop because I couldn't stop bringing home the "hard cases" LOL
I'll post again after my doctor visit, or if someone else replies. Good Health to you!
Marilyn0 -
marilynYoungerSis62 said:Surgery a 3rd time
Thank you for replying to my post. I had an MRI done after the first diagnosis. But they only concentrated in my pelvic/stomach area (at least that is how it seemed to me). I don't think I asked enough questions back then. Cancer runs in my family, but no one has been diagnosed with colon cancer. Breast cancer on mom's side: cousins, aunts, my mom
Breast cancer on dad's side: aunt, cousins. My brother had a cancerous tumor near the aeorta, as well as lungs (he was heavy smoker), died of cancer at 47. My sister has been diagnosed with leukemia (but she's 71... and it's the kind practically everyone gets?) She is monitored twice a year at this point. Nothing has advanced. I had a total hysterectomy at 36 because of testing "positive" for pre-cancerous cells. I had been fighting endometriosis for 10 years at that point, and was ready to just have it all taken out anyway. I have a long list of questions for the new oncologist. I don't know if my "primary" physician should have been more involved? I mean, we have to be our own advocates, don't we... Sad but true. It seems you go from one doctor to another; I wish you could have only one person take care of everything - at least then I would feel more confident that everything that should be known is known... follow me?
I hope you're experience has left you with many years ahead of you - BTW I love kitties too! I'm mom to 8 - thank goodness my hubby loves 'em too! They are all throw aways - we were involved in cat rescue for many years. I had to stop because I couldn't stop bringing home the "hard cases" LOL
I'll post again after my doctor visit, or if someone else replies. Good Health to you!
Marilyn
The Beradine center at Loyola is a fine hospital. When there be sure to tell doctor of previous resections so They get it all this time.
The best of luck to you. Keep us informed as to the outcome.0 -
Updatedanker said:marilyn
The Beradine center at Loyola is a fine hospital. When there be sure to tell doctor of previous resections so They get it all this time.
The best of luck to you. Keep us informed as to the outcome.
Had my appointment yesterday at Loyola Cancer Center - they are efficient, and made me feel that I was in good hands. BTW I had a typo in the first post; sorry. I stated December 2012 was 2nd surgery DUH - that was December 2011. Back to present - this onc/surgeon feels chemo and radiation are needed before surgery. He is giving me another flex/sigmoidoscopy Monday because he wants to see the site himself before giving his opinion on outcome with colostomy bag.
He stated this isn't colon cancer - it is rectal cancer. Is that what the boards call anal cancer?
I have two options; chemo/radiation therapy for 6 weeks; then 6 weeks rest; then surgery (and hopefully the last one). OR I can have the chemo/radiation therapy, wait 6 months for another scan, and if the cancer is gone, take the risk it is gone for good. That is the way Dr. put it - he gave the opinion the best option would be the first. If the 2nd scan shows more cancer, then I have the complication of pelvic area "thickening" over time from the chemo and radiation which makes it more difficult to operate in the area.
He explained to me that re-curring rectal cancer is not uncommon. His opinion was that I should have had chemo/radiation before my 2nd surgery. Hindsight is always 100% though, right? Anyway, he explained that rectal cancer can send out tendrils into the pelvic area and this is why the combination of chemo/radiation/surgery is the best option.
I sure hope some folks who have a colostomy bag can help me here... I need to Know more about it and what it might be like to have a permanent one. I really could use some input; feeling very unsure of what to do... hard decision...0 -
Dear SisYoungerSis62 said:Update
Had my appointment yesterday at Loyola Cancer Center - they are efficient, and made me feel that I was in good hands. BTW I had a typo in the first post; sorry. I stated December 2012 was 2nd surgery DUH - that was December 2011. Back to present - this onc/surgeon feels chemo and radiation are needed before surgery. He is giving me another flex/sigmoidoscopy Monday because he wants to see the site himself before giving his opinion on outcome with colostomy bag.
He stated this isn't colon cancer - it is rectal cancer. Is that what the boards call anal cancer?
I have two options; chemo/radiation therapy for 6 weeks; then 6 weeks rest; then surgery (and hopefully the last one). OR I can have the chemo/radiation therapy, wait 6 months for another scan, and if the cancer is gone, take the risk it is gone for good. That is the way Dr. put it - he gave the opinion the best option would be the first. If the 2nd scan shows more cancer, then I have the complication of pelvic area "thickening" over time from the chemo and radiation which makes it more difficult to operate in the area.
He explained to me that re-curring rectal cancer is not uncommon. His opinion was that I should have had chemo/radiation before my 2nd surgery. Hindsight is always 100% though, right? Anyway, he explained that rectal cancer can send out tendrils into the pelvic area and this is why the combination of chemo/radiation/surgery is the best option.
I sure hope some folks who have a colostomy bag can help me here... I need to Know more about it and what it might be like to have a permanent one. I really could use some input; feeling very unsure of what to do... hard decision...
So very glad you went for the second opinion. It sounds like this doc knows his stuff. In my opinion, I agree with the doc about picking option 1. I feel that surgical removal is the best chance.
This is the right board for rectal cancer.
I have a perm colostomy since my surgery 2+ years ago and will be happy to answer any questions you have about it. I often recommend the following book to those who will be or may be getting one:
The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies
Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN
It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who have an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store.
Bottom line is that life can be lived well with a colostomy so don't let that possibility overly worry you.
Marie who loves kitties0 -
THANK YOULovekitties said:Dear Sis
So very glad you went for the second opinion. It sounds like this doc knows his stuff. In my opinion, I agree with the doc about picking option 1. I feel that surgical removal is the best chance.
This is the right board for rectal cancer.
I have a perm colostomy since my surgery 2+ years ago and will be happy to answer any questions you have about it. I often recommend the following book to those who will be or may be getting one:
The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies
Barbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN
It was recommended by my ostomy nurse. It is an excellent source for the person just starting out. It was written by a mother who have an ostomy and her daughter who is an ostomy nurse. You may find it at your library, but definately on Amazon or perhaps at the local book store.
Bottom line is that life can be lived well with a colostomy so don't let that possibility overly worry you.
Marie who loves kitties
Oh Thank you - thank you. I am so lost - I will get the book this morning, through my eNook and begin reading right away. I am a person who needs a lot of information in order to make a decision - and I am so afraid of the permanent ostomy bag... I have 5 cats who are used to sleeping with us. I know that must sound insane as a reason to be afraid of the bag - but we never had children, and they are my substitute. Plus I'm a stomach sleeper -
I still work - my husband is on disability - and if not for my job, we'd have no insurance coverage (other than if he went on Medicaid) which overs very little. He didn't have any retirement income to draw on either. With today's economy, I don't know how long they would put up with any "problems" I may have to deal with? They are downsizing almost every other month... so it adds a little more stress to my decision making.
Thank you for being there0 -
No need to be lost!YoungerSis62 said:THANK YOU
Oh Thank you - thank you. I am so lost - I will get the book this morning, through my eNook and begin reading right away. I am a person who needs a lot of information in order to make a decision - and I am so afraid of the permanent ostomy bag... I have 5 cats who are used to sleeping with us. I know that must sound insane as a reason to be afraid of the bag - but we never had children, and they are my substitute. Plus I'm a stomach sleeper -
I still work - my husband is on disability - and if not for my job, we'd have no insurance coverage (other than if he went on Medicaid) which overs very little. He didn't have any retirement income to draw on either. With today's economy, I don't know how long they would put up with any "problems" I may have to deal with? They are downsizing almost every other month... so it adds a little more stress to my decision making.
Thank you for being there
While I only have 2 cats, they do like to sleep with me...lol. The only problem I had with that was when I first got home from surgery. I had to keep them out just to make sure that they didn't accidentally hurt the surgery site.
I too was and often still am a stomach sleeper. When I raised that question I was advised to get a body pillow. Put it on whichever side your ostomy is on, get on your stomach and pull up the knee on that side onto the pillow. It will create a little extra room between the ostomy and the bed. (does that make sense? hard to explain...lol).
OK, any of you gents reading...just bypass this part...lol. I also sleep with panties on which helps to keep the bag from flopping around. I never tried the belt which is offered to help hold the bag in place. There are also web sites which offer ostomy 'fashions'...which include panties with a 'pocket' to hold the bag and many other items.
Having an ostomy should not impact your work, unless you are having to lift heavy things. You do not want to do any heaving lifting. If that is required for you job you will need to work with them on that. Those with ostomies are covered under the disability act when it comes to work adjustments.
It is good to know as much as you can, but if something comes up always feel free to ask here.
Marie who loves kitties0 -
I've got the book!Lovekitties said:No need to be lost!
While I only have 2 cats, they do like to sleep with me...lol. The only problem I had with that was when I first got home from surgery. I had to keep them out just to make sure that they didn't accidentally hurt the surgery site.
I too was and often still am a stomach sleeper. When I raised that question I was advised to get a body pillow. Put it on whichever side your ostomy is on, get on your stomach and pull up the knee on that side onto the pillow. It will create a little extra room between the ostomy and the bed. (does that make sense? hard to explain...lol).
OK, any of you gents reading...just bypass this part...lol. I also sleep with panties on which helps to keep the bag from flopping around. I never tried the belt which is offered to help hold the bag in place. There are also web sites which offer ostomy 'fashions'...which include panties with a 'pocket' to hold the bag and many other items.
Having an ostomy should not impact your work, unless you are having to lift heavy things. You do not want to do any heaving lifting. If that is required for you job you will need to work with them on that. Those with ostomies are covered under the disability act when it comes to work adjustments.
It is good to know as much as you can, but if something comes up always feel free to ask here.
Marie who loves kitties
And it looks promising! Also, thank you for the tips on "belly sleeping" and all the other insights...
I will update after my sigmoidoscopy tomorrow - BTW, I am STARVING... lol
Hugs
Marilyn0 -
Thank Youtootsie1 said:Glad you went
I'm very glad you went for that second opinion! Praying for wonderful results with your treatment.
*hugs*
Gail
Thanks for the prayers! Why we must walk this path is known only to Him, but I believe if I ask Him, he will give me the strength to carry this cross.
And it looks like I will need it - CT showed suspicious spots on my liver. Having a PET on Thursday. Cancer has advanced since 6/29 - this flex sigmoid found what the doctor called "a cancer island" within wall of anus. Also saw more cancer than what was in report from 6/29 (one additional location besides one on anus). These were not in the 6/29 report.
So, my real options will have to wait until we find out if my liver spots "light up" on Thursday.
Do we all go through this, "why me" stage???? And yet, I still feel weirdly calm; I think it hasn't sunk in, and the treatments have not started.
I will update again on Friday, or Thursday evening - for now, hugs to all
Marilyn0 -
Welcome
Just read through your posts and it sounds like you are beginning to get your head around everything you are facing and your knowledge is growing rapidly which really does help you feel more in control in this early phase when things feel like a whirlwind. I had rectal cancer in 2004 and am currenlty fighting a recurrence. The treatments you are being offered are very standard and appropriate- the preop chemoradiation is very common, followed by the surgery. Depending on how low your tumour is stomas may be used and may be reversible or permanent- it sounds like yours may be very low if the anus is involved so the stoma may be permanent if there isn't enough lower segment left to rejoin it to. I had a stoma for year and, once it became normal, didn't stop doing anything- played squash, swam, played with my kids, worked fulltime etc. I am looking at another one now and in truth it doesn't really bother me now that I know what it is like.
The liver issue needs investigating before they can decide how to proceed- it will affect how your cancer is 'staged' and does affect chemo choices and ultimately your prognosis. It does sound like your team are being very thorough and thoughtful before proceeding which is impressive and appropriate. Did you ever get your CEA- whilst it isn't a reliable indicator of disease level it is another piece of information to feed into the puzzle which you and your team are trying to piece together.
Recurrence locally in rectal cancer isn't common but it does happen- mine was after 7 years of having no evidence of cancer (to the point where I genuinely hoped I was cured). It is important that the treatments in recurrence are well thought through as it is more complex than treating the original cancer- thought needs to be given to how widely to resect to be confident of getting rid of it all (the tendrils that your doc talked about are the real problem). But your team seems to be gathering all the info before acting which is great.
For now, gather your strength, develop your knowledge and understanding and ask the questions you want answered (and don't leave till you undertand the answers). What is done next will be hugely important in deciding your long term outcome. I don't like the idea of waiting and seeing what would happen without surgery for 6 months but it is impresive they have given you that less aggressive option (not everyone wants to be so aggressive, as surgery is not somethiing to decide lightly). But ultimately chemoradiation alone is unlikely to cure this- surgery really is the thing that is most likely to offer you the best chance of really beating it.
Hope this helps and that I am not just adding to your confusion. I am happy to answer as best I can any questions as have had a similar illness (though so far my liver seems clear- PET scan coming up so fingers crossed it stays that way).
Will be thinking of you,
steve (who is less keen on kitties- more a chicken man myself; like pets that give you food and eat your scraps!)0 -
Thank You Stevesteved said:Welcome
Just read through your posts and it sounds like you are beginning to get your head around everything you are facing and your knowledge is growing rapidly which really does help you feel more in control in this early phase when things feel like a whirlwind. I had rectal cancer in 2004 and am currenlty fighting a recurrence. The treatments you are being offered are very standard and appropriate- the preop chemoradiation is very common, followed by the surgery. Depending on how low your tumour is stomas may be used and may be reversible or permanent- it sounds like yours may be very low if the anus is involved so the stoma may be permanent if there isn't enough lower segment left to rejoin it to. I had a stoma for year and, once it became normal, didn't stop doing anything- played squash, swam, played with my kids, worked fulltime etc. I am looking at another one now and in truth it doesn't really bother me now that I know what it is like.
The liver issue needs investigating before they can decide how to proceed- it will affect how your cancer is 'staged' and does affect chemo choices and ultimately your prognosis. It does sound like your team are being very thorough and thoughtful before proceeding which is impressive and appropriate. Did you ever get your CEA- whilst it isn't a reliable indicator of disease level it is another piece of information to feed into the puzzle which you and your team are trying to piece together.
Recurrence locally in rectal cancer isn't common but it does happen- mine was after 7 years of having no evidence of cancer (to the point where I genuinely hoped I was cured). It is important that the treatments in recurrence are well thought through as it is more complex than treating the original cancer- thought needs to be given to how widely to resect to be confident of getting rid of it all (the tendrils that your doc talked about are the real problem). But your team seems to be gathering all the info before acting which is great.
For now, gather your strength, develop your knowledge and understanding and ask the questions you want answered (and don't leave till you undertand the answers). What is done next will be hugely important in deciding your long term outcome. I don't like the idea of waiting and seeing what would happen without surgery for 6 months but it is impresive they have given you that less aggressive option (not everyone wants to be so aggressive, as surgery is not somethiing to decide lightly). But ultimately chemoradiation alone is unlikely to cure this- surgery really is the thing that is most likely to offer you the best chance of really beating it.
Hope this helps and that I am not just adding to your confusion. I am happy to answer as best I can any questions as have had a similar illness (though so far my liver seems clear- PET scan coming up so fingers crossed it stays that way).
Will be thinking of you,
steve (who is less keen on kitties- more a chicken man myself; like pets that give you food and eat your scraps!)
I appreciate your input, and every bit of info helps. So if I'm following along correctly, you have had your stoma for a few years now, and based on what you have said, I will adapt and life will go on.
My latest CEA drawn 6/23 was .5 - go figure that one out... nothing makes sense about any of this...
I'm glad I was awake to see everything "down there" because I think I would have had my doubts about any report based on CEA
I'm hoping the liver spots are not going to light up - if they do, I'm ready (I think) to accept and fight, and I really feel confident in my current "team" - it's a teaching hospital, and my surgeon/onc is an Assistant Professor there. This facility has a very good reputation, even out of my home state. If I am Stage four (with liver involvement) I am not going to blame current team, for heaven's sake. Although my current onc almost seemed apologetic to have caught the liver spots... He was explaining the CT scan with, "well with your history, I felt a CT scan of your entire body was necessary"; i.e. the other team I had only did abdomen and pelvic area - this guy did Neck, Chest, abdomen and pelvic region. Guess it's a good thing..
Thanks again for your support -0
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