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Newly diagnosed Stage 3 rectal cancer

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

I am home 1 week after colectomy.. Just found out the cancer has spread to 3 nodes out of 20 removed.The doctors found 2 nodes in my right lung 2mm and 4mm.. they say they probably nothing but will rescan in 1 year..I am concerned..I have an apot with my Oncologist in 1 week..Should I express my concern ...Please help anyone if you have info It will b appreciated..Karen

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

Hi, Ksue59... I am just now beginning with the lung nodes myself. I have one that is 4mm and the doctor said that it is too small to even determine if it is cancer yet and so we are going to wait it out and do scans every three months to see if it changes in shape and size. The doctor said that it is possible that it may even go away on its one. He feels that the odds are that it is cancer however he cannot confirm that until the biopsy. It has to grow though in order for him to even find it to do the biopsy. On Friday, I do a catsacn to see if there are any hidden nodes and if they are then I will start chemo.

You asked if you should be concern. I asked my surgeon this same question yesterday and he said yes be concern but don't panic. Its a lets wait and see and if it is then he will cut it out. I guess the lung nodes are slow growing and nothing to panic about.

Big hug to you.

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

Thank u so much for the info...I do feel better..I am sorry u are dealing with the Lung nodes...The doc did tell me I was at high risk for them being cancer...I guess it is a wait and see.I prob should direst my attention on chemo.I see the oncologist in 1 week..Scary dont know what to expect!!!
Good luck with your scan on friday!! Please keep us posted...God Bless..

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

First, welcome to the board.

My advice is that if you are concerned, then get a second opinion particularly recarding the right lung. A year seems a long time to wait.

Wishing you the best in your treatment.

Marie who loves kitties

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

Yes thank you..A year seems to long for me to...I not sure how to go about being concerned without being pushy?? k

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

When it comes to fighting cancer, it is ok to be pushy when you have concerns about the care you are receiving.

There are too many stories out there about folks who just followed a doc's advice even though they had concerns...and found out too late that they should have pushed harder.

If your doctor doesn't see it as necessary, then go find that second opinion. No good doctor should object to that.

You have to be your own advocate in the business of fighting cancer.

Marie who loves kitties

Minnesotagirl
Posts: 141
Joined: Sep 2011

Ksue59,

Well, I am sorry you have to join this club ~ so many other clubs to join that would be more fun than this one ! Ha Ha

I am a stage 3 rectal cancer survivor (9 months of no evidence of disease). I wanted to share that with you because these are scarey times you are in right now and I think positive feedback is a must. I also had 3 lymph nodes out of 29 that were positive for cancer. I, however, did not have any nodes in my lungs. I would not wait 1 year to rescan your lungs...to much can happen in 1 year. Maybe you should ask the Oncologist if they can do ultrasounds every 3 months to see if there are any changes in the lungs? I had ultrasounds done on my liver every three months to make sure that the hemangioma's did not grow (non-cancerous lesions or cysts). I also have a CT scan of the abdomen, pelvic and chest every 6 months per the recommendations of Mayo Clinic in Minnesota.

It is good to express all your concerns to your Dr. and if you don't like her/him answers ~ get a 2nd opinion or in my case I have my CT scans, colonoscopy, surgery done at Mayo Clinic/Hospital in Minnesota and my radiation/chemo/ 3 month appts. locally done with my oncologist in the area. My insurance was fine with it and I felt much better having a National Cancer Center on board with my prognosis and disease.

You must be your own advocate...my prayers and blessings are with you in this personal journey. Don't be afraid to direct any questions to this site ~ people are great and very helpful!

"Minnie"

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

Hi Minnie,

Thank you so much for the positive words! I guess I have alot of questions with no answers till I see the Oncologist. I am trying to become as informed as possible so when I do meet with doctors I have a little sense of what they r saying..I think this is normal. I dont want to wear my welcome out to soon here though! Ha....Thanks..K

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

I am one of the more silent members, stage III rectal (1 node, no far mets), over 8 years since last treatment...NED...also NED (No Evidence of Disease) on stage II breast (new primary) for over 7 years.

I agree with others to have your questions ready for the oncologist...but also agree with you that you don't know enough yet to form any opinion on the treatment being suggested. You should think of your oncologist as the captain of your treatment ship...and go from there.

As far as wearing out your welcome here...never happens...we have all been where you are..feel free to post often!!!

Hugs, Kathi

swimmer22
Posts: 53
Joined: Oct 2011

I've been in this journey now for 16 months-- similar to you. After 16 months I now show no evidence of disease.

I too started out with a colorectal diagnoses and luckily, my doctor also noted two small nodules in my right lung. One was 3 mm and the other 4mm. They gave me an option to biopsy them although they said they were very small and it is often hard to get an accurate reading from a biopsy when the nodules are so small. I could also wait 3 months and rescan. My decision was to have them removed via VATS surgery. They began my marking the nodules with small needles inserted during a CAT scan to mark them- then off to surgery for removal.

They were removed (with clear margins) and did test positive for metastatic CRC. Luckily for me-- they were caught very early and removed. I then did 6 treatments of Folflox. Next came chemo/radiation to treat the rectal tumor prior to surgery (standard treatment). I had a complete response to this treatment, dissolving my tumor to scar tissue. I had surgery to remove the scared area and pathology came back totally clean as well as they took 12 lymph nodes, all of which were cancer free too!

I just concluded a mop-up chemotherapy treatment consisting of 12 treatments of Folfiri.
All of my PET Scans since chemo/radiation have come back clean. You should get a PET scan rather than just a CAT Scan.

My message to you-- get those lung nodules evaluated. If necessary, find another doctor for a second opinion. Waiting so long is not a good idea. Likewise, I hope you will receive chemotherapy, especially with some lymph nodes testing positive for cancer. Best of luck to you!

steved
Posts: 836
Joined: Apr 2004

I am not sure how long you are since diagnosis but I sense it is still pretty early and you are in that phase where a huge amount of investigating and treating happens followed by it all seeming to stop. I personally found that next stage one of the hardest to deal with. When I was having operations and chemo/radiotherapy there was a real sense of being active in fighting this thing. When that all comes to an end and you move to a phase of watching and waiting to see if it comes back there is a real sense of impotent uncertainty that I found very hard to deal with.
However, living with that uncertainty is an unavoidable part of having cancer. All of our futures are very uncertain and in many ways we are unable to directly influence them. Many cope with that by trying to find things that gives them a sense of doing something- hence the variety of strategies used by people with cancer to try to control the illness. But ultimately it is about incorporating that uncertainty into your life but not letting it rule you.
I don't really have the answer but you are right to acknowledge your concerns and you should express them to your docs (I am a doctor so feelokay in saying that!) but others above are also right to not let them build to overwhelm you with panic.
Steve

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

and such a thoughtful post!!!!

As I move further and further (farther and farther?) away from the 'reality' during treatments (7 years ago, July 4 was my last rad for the breast cancer that followed the rectal...), I realize that the thing that stays with me, and will for the rest of my life, is the feeling of uncertainty....

I choose to cope with it by living life full-on. I once said in a newspaper interview (*smile* my 15 seconds of fame has long since been over) that I see the threat of cancer as a large bird flying behind me, just outside of my vision. I know it still flies there, but I do not let it be involved in my everyday life. When it flies closer (such as when I go for a followup exam and see my 6-inch-thick patient folder with my oncologist), I just look forward, to after the exam, when once again the bird flies out of vision....

I don't know of many other diseases, even after being told it's over, carries this same uncertainty...a broken leg heals, a bout with the flu even is forgotten...

Hugs, Kathi

Phil64's picture
Phil64
Posts: 461
Joined: Apr 2012

I had a Lung Node show up on a CT Scan as well. They wanted to do a biopsy of it but because of where it was located a biopsy would have been a fairly risky matter...

Instead of doing a biopsy they did a PET scan which, from my layman understanding, can show cellular-level activity in the body. According to the PET scan the nodule was not taking in some chemical they inject into the body; therefore it was deeemed as "not consistent" with cancer.

And from talking to others on different support groups, my understanding is that a nodule frequently can turn out to be nothing. Also, my understanding is that sometimes flem in the lungs (possibly from a cold or cough) may show up as a lung nodule on ct scans.

However, even in my case the oncologist said we still need to watch the nodule and see if it grows. I'm currently scheduled for a follow-up CT Scan in mid May but may end up getting one sooner given that I have recently found out I also have colon cancer (previously diagnosed with testicular cancer).

Good luck and God Bless,

Phil

danker
Posts: 741
Joined: Apr 2012

definately get a second opinion. one year is too long to wait. If necessary, fire the doctor!! I fired my initial oncologist and am happy as a clam with my new one. Good luck for a happy outcome.

Annabelle41415's picture
Annabelle41415
Posts: 4262
Joined: Feb 2009

Welcome to the board and I'm sorry you have to join us but we are a great bunch of people. Regarding the lung situation, as has been stated before, you should probably get a second opinion. Why would you want to wait a year to see if anything more happens. I'm wishing for you to have a speedy recovery and please feel free to post anything concerns or questions you have. Believe you, we have talked about almost everything on this board. Once again, welcome.

Kim

Sundanceh's picture
Sundanceh
Posts: 4297
Joined: Jun 2009

Howdy and welcome!

At this point, a year is way over the top for a couple of good reasons. First, if it is cancer giving it that much leeway could land you in even bigger trouble. A year or so ago, I had some financial issues and could no longer afford any scans - I've been at cancer for going on 8-years now and I fooled myself into thinking I could monitor my situation with bloodwork.

Big mistake...the cancer was literally doubling in size every 2 months. By the time, we got to the O/R, well it was just trouble and it was another hard year invested into a long fight.

At this point, I would request that the onc do the next CT scan in about 2 months, 3 tops. That way you can gauge how far it is or is not growing...it doesn't hurt to watch and wait if the spots are small...when they are too small, they are too tiny to biopsy and you just don't want to go digging into the chest cavity haphazardly...you only get so many good chances at the lung...alot of scar tissue builds up there....I've had 2 major lung surgeries myself.

So, a year is out of the question, in my opinion....stick with 8-12 weeks...scan...and re-evaluate. The spots right now that you have are very tiny...my last tumor was about 6.2 CM, which is the size of a tangerine just to give you some scope on sizes.

Wishing you the best!

-Craig

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

Wow well what can I say,,,,Thank you so much. The support and Info is more than I ever expected. I have an apot with my surgeon on Friday and an apot with my oncologist on Tuesday [whom i have not met]I have no Idea what to expect..It feels so sureal....I dont even feel 100% from the colectomy/surgery I had 11 days ago..Strange thing is that when the cancer was found they said it was in the colon and that it was small maybe stage 2 and that the surgeon was going to remove the cancer and 12 nodes as a precaution and I would be cured...So no treatment b-4 surgery..Then after surgery surgeon said it was Rectal cancer and she couldnt find the markers from the colonoscopy and that it was larger than thought Stage 3 in 3 lymph nodes out of 20..The surgeon told me I was very lucky I didn't have a bag??So as u can see I am trying to stay positive but the cancer is not cooperating!Needless to say I am confused and dont want to complain I am very grateful to the doctors...I just feel I have no control...Keep all your thoughts coming my way..I am so happy I found all of you!
May God Bless us ALL!!!!

Minnesotagirl
Posts: 141
Joined: Sep 2011

Ksue59,

You are at a very critical point in your care ~ are you being treated at a National Cancer Institute or just a local clinic/hospital. The reason I state this is that I don't like all the unknowns that you speak about in your last statement. I know this journey can be so overwhelming but you must take control of having the best of the best Drs., surgeons, etc. in your corner. From your statements above, I would question them. I don't understand why they did not treat you with chemo and radiation prior to operating...I had the same diagnosis as you and the National Cancer Guidelines usually recommend chemo and radiation prior to surgery??? I was only "49" when diagnosed and you appear to be young as well. I am not saying this to scare you but I want a positive outcome for you and you must be aware of your care. I was fortunate enough to have a daughter who is a Dr. and kept my best interest at hand.
God bless you my dear. "Minnie"

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

Hi,Minnie I am at my local hosp w Drs who are specialists in cancer surgery. I am not at a cancer hosp..Dana Farber ect...My surgeon told me outright that no need for treatment prior that this was a small mass. CT scan then showed the 2 nodes on my right lung,my surgeon said it is prob nothing...She said cancer was small stage 1 MAYBE 2 with no metastasis...Yes u can see why i am comcerned..How can cancer b in the colon then turn out to b rectal Stage 3 with 3 nodes? I dont have the answers but the doctors have not been entirely correct..My CEA is low they said 1.7 they said it no indication of cancer so thats good..It should b over 3 to b concerned. I guess thats why there not concerned about the lung nodes..The surgeon did say that just because cancer in nodes doesnt mean its in other nodes? She said she got it all..And yes I just turned 52..We are young, to young for this..I am not sure what to do..I see the surgeon tomorrow.. I need my ducks all lined up!

Lovekitties's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

I guess I am a bit surprised by your doctor's statement that your CEA results means no cancer. As lots of folks on here can tell you, CEA is not a reliable marker for all. Some folks never have it out of normal range, others have theirs go into the thousands. I would suggest that yours is not a good indicator since you know you had cancer based on the surgery results.

I had no treatment prior to surgery, in part it was my decision. I had 2 options. The first was to do chemo and rads then surgery in order to try to avoid having a colostomy, but there was no guarantee and it would delay cancer removal by many months. The second option was to go direct to surgery, remove the rectal tumor and have a perm colostomy. I took option 2 because I wanted the tumor out ASAP.

Absolute staging really can't be done before surgery unless scan show a positive metastasis to a distant organ.

Ask your questions to your surgeon, and see what answers you get. It is vitally important to have every confidence in your doctors and their determinations. While we all hope for the best possible outcome, I prefer to hear the possible worst and then be happily surprised when it turns out better. Sugar coating possibilities is not an advantage in this war.

Good luck with your appointment.

Marie who loves kitties

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

I have questions but about my treatment,I want to question my diagnosis, but not sure how without coming across like i doubt my surgeon...

Minnesotagirl
Posts: 141
Joined: Sep 2011

Ksue59,

First, of all, did you review the Cat scan or petscan with your surgeon prior to surgery? I would ask the surgeon to pull the scans up and show you exactly where the cancer was...colon or rectal area. They should be able to circle the area that they were concerned about that led you to surgery and tell you where in the colon/rectal area it was.
Second, I would ask when they tatooed you inside the colon or rectum for surgery, why didn't they know at that point when they marked you, whether it was colon or rectum, and why was she/he unable to find the tatoo if you didn't have radiation???
I think once you are given straight answers from the surgeon clarifying how everything jumped around so much, you will feel better about your diagnosis.
Third, when you see your oncologist or surgeon, I would ask to have a Lynch Syndrome test done to see if it could be a hereditary thing that could be passed onto your children. My oncologist did not suggest this test to me, but actually my surgeon did and I had it done. I guess the cost can be $1000.00 for that test, but, my insurance covered it and my results were negative for that. Very important test if you have children.
Fourth, I would question why they felt the tumor was so small. Before I had surgery, they knew the size but just couldn't tell me how far it had passed through the different linings / walls in the rectum or how many lymph nodes were positive. When you had your CT or pet scan, did any lymph nodes light up?
Just remember, you paid this surgeon (or your insurance did) a hefty price to have the best care possible, so don't be afraid to ask and share your concerns. You have a right to know!
I hope you understand a little of what I am trying to say...wish I lived closer to you and I would go with you to the scheduled appointment but that can't happen so this is the best I can offer. Everything will be o.k. and pretty soon you will sharing information on this board about your story and helping someone else in the process~
"Minnie"

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

No I never saw the CT scan The doctor who tattoed me said the cancer was in my colon and I remember him saying he tattoed extensively so the surgeon could find the cancer. Also when the doctor spoke to me after the surgery and said she couldnt find the markers and had a hard time feeling the tumor but the tumor was mostly in rectum. She ultimitely changed the diagnosis to reflect rectal cancer.. She said b4 surgery she was taking 12 nodes but after seeing tumor took 20. they always maintained it would b stage 1-2 and it would be fine...I never questioned ....I want to Thank you for your support..I will take your information with me to my apot...God Bless

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Always feel able to discuss any concerns with your oncologist, and if he/she doesn't address your concerns to your satisfaction, then find another one. You may find you have the exact oncologist you need on your first appointment (I liked mine and still have him) but if you aren't comfortable with him/her, go find another one that you can be comfortable with and trust. My best to you.
Winter Marie

ksue59's picture
ksue59
Posts: 9
Joined: Apr 2012

I meet my Oncologist on Tuesday, I look forward to meeting her..I do like my surgeon who I see today. I do have questions as to why my cancer findings took the twist it did but no one said cancer wasn't fickle....I dont want to seem like I blame my surgeon [I dont ]I think If she were to explain it to me I will feel better...Thats what I want...I need to let go of this cloud over me so that I can go forward..I Thank everyone who has been here for me with all of your support. I take all of your expertise with me to my apot today...God Bless...

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