Confused.....Rectal cancer stage 2 when found in lung was told stage 4

samagnews53 · June 2015

Hello im new to this group so really don't know yet how to navigate through but here is my story. In Sept.2012 I was diagnossed with stage 3c rectal cancer I did radation and pill form chemo for a month and half waited 3 months then had surgery to remove the tumor 3/1/13. I was then told since no lympnode were involved I would now be considered stage 2. I did IV chemo every 2 weeks..... had to postpon a few times due to my numbers were to low eventually went back to pill form the last few treatments..... ended that with 1 treatment left Onco Dr felt it was doing more harm then good. Cotinued monitoring me with ct scans and blood work every 3 months. There was a spot found on liver and lung so we kept monitoring them. Had surgery again to do reversal of ilostomy in Oct 2013. Well the spot on my lung started to grow but very slowly...... then in July of 2014 it became 1 cm so we did a pet scan and that was all I was showing so the referred me thorasic surgeron to have spot removed, we didn't do biopsy we all assumed it was the rectal cancer and decided to just remove it. So in Oct 2014 I went to have VAT surgery to remove the nodular......come to find out it was a unsucessful surgery they missed the spot..... however it wasn't confirmed untill March of 2015 and had growen to 1.4 cm. So now we did another Pet scan to make sure it hadden spred and it hasn't so now they did a needle biopsy in May 2015 and it was finally confirmed it is rectal cancer in my right lung (we kinda already knew wasn't really shocked) then I got a call from Oncologist telling me she is re staging to stage 4 rectal cancer cause it has magistized to my lung and that my surgeon may no longer want to do surgery again. Well talked to surgeon and he stated nothing has changed for him except this time he will do a lobectomy wedge style. I also was offered cyperknife radation but it would take 2 to 3 months to tell if it worked due to all the scar tissue from my unsucessful surgery...... and if it didn't work then they could maybe do surgery. I chose the surgery I go in this Monday June 8. I just want this cancer out of me. When my Onco Dr told me she was re staging me she also told me I only had 1 year to live and asked me how I want to spend it is up to me if surgery is what I want then do it. I refuse to believe I only have a year left the sooner they get this cancer out the better. I still don't fully understand how I go from stage 3c then to stage 2 and now stage 4 is that common for it to re-staged so much? Any/all feed back is welcomed.

Thank you for listening

samagnews

Lovekitties · June 2015

Hi and welcome

I can understand your confusion about staging.

Most often doctors will not stage before surgery unless a scan shows other involvment.

It sounds as if the doctor originally assumed that there was lymph node involvement....hence Stage 3. After the surgery, when no lymph nodes were found cancerous, it was downgraded to Stage 2.

Stage 4 means that cancer has moved to another distant organ, usually liver or lungs.

I am glad that your surgeon is still willing to go after the new findings.

You may want to consider getting a second opinion from another oncologist. There are lots of folks who have been stage 4 who have far surpassed the 1 year that your current doctor gave you. A cure may not be possible yet, but you can live with it treating it as a chronic disease.

Best wishes for your surgery and your future.

Marie who loves kitties

samagnews53 · June 2015

Lovekitties said:
Hi and welcome
I can understand your confusion about staging.

Most often doctors will not stage before surgery unless a scan shows other involvment.

It sounds as if the doctor originally assumed that there was lymph node involvement....hence Stage 3. After the surgery, when no lymph nodes were found cancerous, it was downgraded to Stage 2.

Stage 4 means that cancer has moved to another distant organ, usually liver or lungs.

I am glad that your surgeon is still willing to go after the new findings.

You may want to consider getting a second opinion from another oncologist. There are lots of folks who have been stage 4 who have far surpassed the 1 year that your current doctor gave you. A cure may not be possible yet, but you can live with it treating it as a chronic disease.

Best wishes for your surgery and your future.

Marie who loves kitties

Thank you....... . So it

Thank you....... . So it sounds like I was 2 back then and now i'm 4. I thought maybe I was orginally treated for stage 2 when in reallity I was already stage 4. I didn't know it could be treated as a chronic illness. I feel so much better going into this surgery now.

Thank you so much Marie who loves kitties!

Trubrit · June 2015

Marie is right

In all that she says, including not to worry about your 'year' and what you're going to do with it.

Nobody can tell you how long you have left. Sure, they can give it a shot, and I'm sure allot of times are right, but when push comes to shove, its your life, and if you do the best you can to fight on all fronts, then your year can be two, four ten. Who knows, you could get struck by lightening and Cancer may have nothing to do with your passing.

A second opinion is always a good thing, though I didn't go for one myself.

Go into your surgery next week with nothing but positive thoughts, and plans to lead as healthy and happy a life as possible when you get home. Come back and visit us here, let us know how things are going. Get to know us, and you will find there are many Stage IV folks who have long surpassed their Oncologists predictions.

You will, of course, hear about friends here on the forum that have passed, and they are many. It is not that we here are all walking around with the proverbial wool over our eyes; its just that we are here living the life we have, regardless of how long it may be.

Sue - Trubrit

samagnews53 · June 2015

Trubrit said:
Marie is right
In all that she says, including not to worry about your 'year' and what you're going to do with it.

Nobody can tell you how long you have left. Sure, they can give it a shot, and I'm sure allot of times are right, but when push comes to shove, its your life, and if you do the best you can to fight on all fronts, then your year can be two, four ten. Who knows, you could get struck by lightening and Cancer may have nothing to do with your passing.

A second opinion is always a good thing, though I didn't go for one myself.

Go into your surgery next week with nothing but positive thoughts, and plans to lead as healthy and happy a life as possible when you get home. Come back and visit us here, let us know how things are going. Get to know us, and you will find there are many Stage IV folks who have long surpassed their Oncologists predictions.

You will, of course, hear about friends here on the forum that have passed, and they are many. It is not that we here are all walking around with the proverbial wool over our eyes; its just that we are here living the life we have, regardless of how long it may be.

Sue - Trubrit

Sue-Trubit,
I needed to hear

Sue-Trubit,

I needed to hear that....... Thank you.

I'm looking forward to coming back and geting to know you all.

Positve thoughts and faith is what I have and will continue to have!!

Thank you again

Stacey-samagnews

z · June 2015

samagnews53 said:
Sue-Trubit,
I needed to hear
Sue-Trubit,

I needed to hear that....... Thank you.

I'm looking forward to coming back and geting to know you all.

Positve thoughts and faith is what I have and will continue to have!!

Thank you again

Stacey-samagnews

Stacey

Hello, I had stage II anal cancer and was treated with chemo radiation for 5 weeks, and I completed tx 6-31-09, then upon follow up scanning a year later a lung nodule was found at 7mm, so it was decided to re scan in 3 months to see if it grew well it did grow to 1.3 cm so it had to come out.

I had the lower right lobe removed via a lobectomy. The nodule was biopsied right there in the OR before proceeding, where it has found to not have hpv like the anal cancer did, therefore not a metatsis from the anal cancer.

It was squamous cell cancer like the anal cancer. I was a 35 year smoker until 5-4-9 where I quit before having the anal cancer treatment.

With all that said I had the lobectomy on 9-23-10 and have the all clear. I am rescanned every year.

I think you should get a 2nd opinion as well, and I really don't like what your oncologist said as they should have followed up the statement of a year to live with but I am not god. Also, another surgeon for the lobectomy, I was fortunate to have a surgeon who performs about 40 lobectomies a year and truly trusted him.

The lung cancer was a new primary since it wasn't a metatsis stage Ia

I wish you well and keep us posted. Lori

YoVita · June 2015

I'm so sorry for all you've been through

You've been through the ringer. I just wanted to give you some hope based on my history. In February, 2010, diagnosed stage IIIC rectal cancer after surgery, followed by radiation and chemo. Summer 2012, found one lung nodule after ctscan and petscan. Found to be metastatic from earlier rectal cancer. Had VATS surgery, no follow up chemo, and am still here three years NED after stage 4 metastatic restaging. I have ctscans every 6months or so. Best wishes to you! I'll be watching your progress.

dl_vbis · June 2015

YoVita said:
I'm so sorry for all you've been through
You've been through the ringer. I just wanted to give you some hope based on my history. In February, 2010, diagnosed stage IIIC rectal cancer after surgery, followed by radiation and chemo. Summer 2012, found one lung nodule after ctscan and petscan. Found to be metastatic from earlier rectal cancer. Had VATS surgery, no follow up chemo, and am still here three years NED after stage 4 metastatic restaging. I have ctscans every 6months or so. Best wishes to you! I'll be watching your progress.

Ms. YoVita,
May I ask what

Ms. YoVita,

May I ask what kinds of treatments did you take? I am suposedly IV with metastisi to lungs and nodes also. The doctors wont do any kind of surgery to fix/remove anything. I am 45 now and feel fine, other than when I am doing chemo. My labs are good, I feel I am strong enough to handle a surgery but the 2 oncologistsI see both say no. I jsut dont understand why? I have been doing just chemo since Sept. 2014. I want this tumor out so it will quit prorducing bad cells. The could get to work on the lungs and nodes. What am I missing here that they wont do. Or do I need to find another onco.?

Lovekitties · June 2015

dl_vbis said:
Ms. YoVita,
May I ask what
Ms. YoVita,

May I ask what kinds of treatments did you take? I am suposedly IV with metastisi to lungs and nodes also. The doctors wont do any kind of surgery to fix/remove anything. I am 45 now and feel fine, other than when I am doing chemo. My labs are good, I feel I am strong enough to handle a surgery but the 2 oncologistsI see both say no. I jsut dont understand why? I have been doing just chemo since Sept. 2014. I want this tumor out so it will quit prorducing bad cells. The could get to work on the lungs and nodes. What am I missing here that they wont do. Or do I need to find another onco.?

You ask

You ask why they won't do surgery on the primary...and it is a good question.

I know that one memeber here has been stage 4 from the beginning and had to fight to get primary tumor removed, and that was only after a long period of very substantial pain and potential blockage from it.

I think you should ask your docs...why not. It may be because they don't want to stop chemo in order to operate as it would give the mets in other locations time to grow. Ususally chemo is stopped for 4 to 6 weeks before surgery and does not recommence for 4 to 6 weeks after. That is a lot of time to be off chemo if the mets continue to increase in size or numbers.

It may be that you can shop around to different surgeons to see if you can find one who will operate.

Best of luck with your treatments.

Marie who loves kitties

YoVita · June 2015

dl_vbis said:
Ms. YoVita,
May I ask what
Ms. YoVita,

May I ask what kinds of treatments did you take? I am suposedly IV with metastisi to lungs and nodes also. The doctors wont do any kind of surgery to fix/remove anything. I am 45 now and feel fine, other than when I am doing chemo. My labs are good, I feel I am strong enough to handle a surgery but the 2 oncologistsI see both say no. I jsut dont understand why? I have been doing just chemo since Sept. 2014. I want this tumor out so it will quit prorducing bad cells. The could get to work on the lungs and nodes. What am I missing here that they wont do. Or do I need to find another onco.?

Hi dl_vbis

I had surgery, FOLFOX and six weeks of radiation treatment for the initial stage IIIc diagnosis. I agree with Lovekitties. Ask your doctors about your treatment plan. We are all different, with different initial diagnoses, stages, locations, etc. I wish you the best.

UncleBuddy · July 2015

dl_vbis said:
Ms. YoVita,
May I ask what
Ms. YoVita,

May I ask what kinds of treatments did you take? I am suposedly IV with metastisi to lungs and nodes also. The doctors wont do any kind of surgery to fix/remove anything. I am 45 now and feel fine, other than when I am doing chemo. My labs are good, I feel I am strong enough to handle a surgery but the 2 oncologistsI see both say no. I jsut dont understand why? I have been doing just chemo since Sept. 2014. I want this tumor out so it will quit prorducing bad cells. The could get to work on the lungs and nodes. What am I missing here that they wont do. Or do I need to find another onco.?

Yes, please get a 2nd opinion.

My brother was originally staged at 2A with rectal cancer. He received radiation and chemo, had surgery to remove the tumor, then had more chemo. He was clear for less than a year when his CEA started to go up. They did a CT scan and found that he had several nodules to the lungs and 1 tumor to the liver. This placed him at stage 4. His oncologist sent my brother to both a thoracic surgeon and a liver surgeon. She felt it was his best chance for a cure. My brother's heart was weak, only functioning at about 20%, so the surgeons felt he was too weak for surgery. Plus, the lung nodules were in very difficult places to reach. They had to lower the chemo to give his heart a chance to get stronger. In my opinion, a good oncologist will look for others options for you, aside from chemo. She told us surgery would give him the best chance of cure, along with the chemo.

My brother had a totally separate cancer back in 2000, non hodgkins lymphoma. He did chemo, had his spleen removed and was cured. The doctors think the chemo from that cancer may have caused his weakened heart, and possibly the cancer, but they don't know for sure. Joe Metz who was a member, passed away but he had a very similar story to my brother.

My brother just had an echo and they found his meds are helping to strengthen his heart. They are probably going to up his chemo dose again because his liver tumor started to grow. We will find out today when he goes in for his chemo treatment. My brother is living with cancer. Whether he is ever cured or not, we don't know, but it's unlikely if he doesn't have the surgery. He goes on with his life, but is living life with cancer as a chronic illness. He was diagnosed in 2011. Telling you that you only have 1 years to live? IDK, I think my doctor had the right answer when my brother asked how long he had to live. She said that with new drugs coming out, they really don't know. Every person reacts differently to chemo. She said we'll keep fighting until you tell us you don't want to fight anymore, or if the chemo stops working. She told him not to look at all the statistic on the internet because they're old and don't take into account the newer chemo drugs that are out there. I told my brother that none of us have an expiration date stamped on the bottom of our foot, so we have to keep moving forward. Good luck in your fight!

Lin

Confused.....Rectal cancer stage 2 when found in lung was told stage 4

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