Long term follow up

Mollymaude

 Hi everyone, I have not posted for awhile but have still been reading posts from time to time. I have a long term follow up question. I just saw my oncologist yesterday and got another all clear, and it is my four year mark. He says CTs are not needed past 3 years and the DREs are not needed past 5 years. He says I can be discharged from his care at the 5 year mark. While I’m glad to get a good report I do feel a bit uneasy with no follow up at all after 5 years. What do you think? I was stage II, T3. My tumor was fairly large (chicken egg size) but no spread to any nodes. Thanks in advance for your thoughts. And for those of you going through treatment right now, hang in there. 

pializ

Mollymaude

Hi!

I am almost 7 years post treatment & understand your concern. I guess that for the majority of us, we are hopefully on the right track with AC as part of our past. However, I think once we have been visited by cancer we fear a recurrence & may always look over our shoulders. It would be nice if we could just let it go, but I don’t think that’s quite how it works. I remember when my CT scans were discontinued and how vulnerable I felt. In fact, I can’t even remember when i had my last MRI. I hope that as time goes by that you feel more at ease without the need for follow up. In fact, as I started writing this I was just thinking that I hope I don’t forget my anniversary so that I can celebrate. I like to think of being in the ‘so far, so good’ club & the day of the anniversary may slip my mind but I think that’s just a good thing as I get on with the busy life I have.I was Stage 3 T2 N1. 

Kind regards

Liz

Mollymaude

Liz

Thanks for your quick reply. It sounds like after the five years and we are cut loose from the oncologist is just another step in the process. Like you said you can't leave it completely behind. Glad to know it's normal to feel a little uneasy. 

eihtak

Mollymaude said:

Liz

Thanks for your quick reply. It sounds like after the five years and we are cut loose from the oncologist is just another step in the process. Like you said you can't leave it completely behind. Glad to know it's normal to feel a little uneasy. 

Mollymaude...

Hi,

Glad to hear that your most recent reports have been good. My case is a bit unique in some ways though worth noting...it was at my 4 year follow-up that an anal cancer met to my lung was found on a CT scan with no symptoms what so ever that would have led me to go in and be checked out until, I suppose, things got worse. I was treated at that time with a lobectomy to remove the entire lobe that contained the mass and then an aggressive course of chemo.

That being said, we also need to be our own health care advocates sometimes. Though I think overall most doctors follow the schedule that you were told, there are things that can be done by just seeing and talking with one's primary care doctor as well. I think that if routine yearly (or even every 6 months) labs are done along with a visit, if there were concerns they could be addressed then, after the 4 or 5 year mark and referred on if needed. A primary doctor can order a chest x-ray, MRI, ect. so its important once discharded from cancer care to have quality care with your primary.

I get that anxious feeling, kind of like losing your safety net, but also I imagine what a good feeling to fly free! Its funny the hold that having cancer has on us, even when NED, it may be out of sight, but is it ever out of mind? I wish you many healthy years of loving life, and hope this journey can settle far in the back on some shelf to do nothing but collect dust. 

Be well...

katheryn

annie4145

I am less than two years

I am less than two years right now, but even after 5 years, I am going to seek yearly scans just to be careful.  (Also, my doctor said that I could be followed with an anascope once a year permanently.)

mxperry220

Followups

My colon rectal surgeon released me from annual check ups after 5 years.  I was diagnosed with Stage II anal cancer in 2008.  I have colonoscopies every three years now by my colon rectal surgeon.

Mike

mxperry220

annie4145 said:

I am less than two years

I am less than two years right now, but even after 5 years, I am going to seek yearly scans just to be careful.  (Also, my doctor said that I could be followed with an anascope once a year permanently.)

Caution with scans

Depending on what type of scan you have most emit radiation.  My doctors have cautioned about having scans requiring radiation due to the fact I had so much radiation during anal cancer treatment.  The reason is radiation can cause cancer.  I do not think MRIs use radiation but PET and CT scans use radiation.

Mike

annie4145

annie4145 said:

I am less than two years

I am less than two years right now, but even after 5 years, I am going to seek yearly scans just to be careful.  (Also, my doctor said that I could be followed with an anascope once a year permanently.)

But I should clarify that I

But I should clarify that I had lymph node involvement stage III, so I am considered "high risk" for relaspe.

eihtak

annie4145 said:

But I should clarify that I

But I should clarify that I had lymph node involvement stage III, so I am considered "high risk" for relaspe.

annie4145...

Hi, 

Check with your doctor and follow your gut. There seems to be some variation on cautioning patients on the risk of scans regarding further radiation. I too was initially dx stage 3b (that was almost 9 years ago) and have been scanned routinely ever since. It was on my 1 year follow-up scan that a rare breast cancer was dx that typically does not show up on mammograms and otherwise would not have been found till late stage. A scan at 4 years post found an anal cancer met to my lung (no symptoms) and again at another scan a couple years ago another anal met. 

Did the scans cause the breast cancer or mets...not at all likely, but they did find them early enough to successfully treat. My radiation doctor said that while there is some bits of truth to the potential in some cases, you really need to weigh the risk vs benefit for each individual situation. 

I will be scanned again this year in March, and though always anxious, I also feel good knowing that if there is some area of concern, it will hopefully be found and managed once again.

katheryn 

Mollymaude

Answers

Thanks to everyone who chimed in about follow up. Reading through the replies it made me realize that each of us is so unique- different stages, different baseline health, different doctors. I realized when I was reading all the different answers I wanted someone to tell me "the right" thing to do but it's never that simple is it? Sigh. I think I would really feel more comfortable with maybe a scan every other year but I have awhile to think about it before I try to talk my primary into ordering a scan. 

feckcancer

Mollymaude said:

Answers

Thanks to everyone who chimed in about follow up. Reading through the replies it made me realize that each of us is so unique- different stages, different baseline health, different doctors. I realized when I was reading all the different answers I wanted someone to tell me "the right" thing to do but it's never that simple is it? Sigh. I think I would really feel more comfortable with maybe a scan every other year but I have awhile to think about it before I try to talk my primary into ordering a scan. 

hi, i am post treatment of 4

hi, i am post treatment of 4 years too. stage 3 and lymph nodes .  i also had 100s of polyps that all disappeared after treatment except 4 which were removed at a colonoscopy 1 year after treatment . no surgery and typical chemoradiation. i was admited in to hospital on the 1st week and last week of treatment for chemo then readmitted for 4 days for dehydration because of diarrhea.  i feel strange/worried/scared at the thought of not being in my Surgeons/Radiation Oncologist/hospitals care next year as well.  At the moment i see my surgeon ( a professor that diagnosed me or someone that works under her)) and my consultant Radiation Oncologist or one of his team alternatively 6 monthly. i started with a x3 check up 6 weeks after treatment finished then going to both doctors  3 monthly, then 6 monthy until a year ago. Before treatment i had a sigmoidoscopy,CT scan, MRI scan & PET scan. my oncologist told me that if the cancer was going to come back in the Anus it usually would in the 1st 2 years and the best way to check that it hadn't come back was with a digital rectal exam and feeling my lymph nodes. 18 months ago my Surgeon sent me for a CT scan and my oncologists were surprised because they thought a MRI scan would be better to pick it up if it had come back. i had the CT scan and the surgeons saw something and sent me for a MRI scan. My oncologists checked a MRI scan i had done of my pelvis after i fell off a pavement 2 years ago with another doctor and said they saw nothing to suggest it had come back. The MRI scan that the surgeons ordered came back as scar tissue.  Last check up with the surgeons team member 6 months ago all good. next check up with the radiation Oncologists next month where i am going to ask him about what happens in the next/last year , what i should do for re check ups. scan etc after the 5 years is up and what he thinks about getting the HPV vaccine because recent research has shown not only does it stop you from getting the HPV virus it also prevents you getting cancer if you already have it. I don't know if the cancer i had was caused by the HPV virus but as something like 80% of the population has HPV there is a pretty good chance it was.  Where i live health care is free and i was treated in my cities public hospital. my doctors work there as well as working in a private hospital. the public hospital did all my tests,scans, treatments, meds, hospital stays, home visit by oncologist nurse.checks etc for free exept for my PET scan which was done at the private hospital but the public hospital paid for it so i do exactly what my doctors tell me to do as i know i am getting awesome treatment. i hope this was helpful to you. 

Mollymaude

Feckcancer

Thanks for your reply! I know my doctor just looks at the treatment algorithm on the NCCN (National comprehensive cancer network) guidelines and follows those. But it seems like especially if there is node involvement you would want scans beyond three years. It seems like several people in this forum who have had mets later on would not have been caught in the three year scan period. I have been told the same as you, that the digital rectal exam is the best way to tell if local recurrence happens. I feel like maybe A yearly DRE from my oncologist might put my mind at ease more too- my gyn who is new to me did a rectal and said she could not even feel the scar tissue so I feel like my oncologist is the best one to notice any changes since he's done so many DREs on me and knows what the scar tissue feels like vs a change that could be recurrence.

annie4145

Part of it depends alot of

Part of it depends alot of personal situation and evaluation of risk.  When I evaluate the risk of secondary cancer due to the radiation caused by scans, I can only hope that if I make it to my seventies and have to deal with it then, I will be happy.  My kids were only 11 and 13 when I was first diagnosed (at stage III) and  I was very concerned that I might not see them graduate from high school.   I was very concerned that I might not have time to raise them.  I have become more positive and less worried since then (with more education and time), but I still will take the yearly scans, and deal with what happens in 20 years, 20 years from now.   But those are just my thoughts today.  Maybe with the passage of time, I will change my mind. 

horsepad

I am stage 4 survivor.  CT

I am stage 4 survivor.  CT scans every year for 5 years.  Colonoscopy every 3 years.  Blood test once a year.  I am a  eight year survivor.  I had a couple scares after the 5 year mark and requested a CT scan.  No reoccurance and doing great!

pializ

horsepad said:

I am stage 4 survivor.  CT

I am stage 4 survivor.  CT scans every year for 5 years.  Colonoscopy every 3 years.  Blood test once a year.  I am a  eight year survivor.  I had a couple scares after the 5 year mark and requested a CT scan.  No reoccurance and doing great!

Horsepad

How wonderful to see your post! Glad you are still doing great! 

Kind regards

Liz

feckcancer

Mollymaude said:

Feckcancer

Thanks for your reply! I know my doctor just looks at the treatment algorithm on the NCCN (National comprehensive cancer network) guidelines and follows those. But it seems like especially if there is node involvement you would want scans beyond three years. It seems like several people in this forum who have had mets later on would not have been caught in the three year scan period. I have been told the same as you, that the digital rectal exam is the best way to tell if local recurrence happens. I feel like maybe A yearly DRE from my oncologist might put my mind at ease more too- my gyn who is new to me did a rectal and said she could not even feel the scar tissue so I feel like my oncologist is the best one to notice any changes since he's done so many DREs on me and knows what the scar tissue feels like vs a change that could be recurrence.

Mollymaude

so I went for my 4 year check up with my Radiation Oncology Consultant today. He did the usual stuff they do.  all good . He said one more appointment with him in a year then thats it but of course any worrying symptons after the 5 years is up to get straight back in touch. I also was a bit paranoid as i am a ex smoker of 1-2 packets a day for 35 years and i have been wheezy in the last few months since i hurt my back and hadn't been as active so he sent me for a chest xray. all good. i had been so worried i nearly kissed him when he said all good but settled on pulling out a bottle of champange and handmade chocolates from my handbag as a big thank you to him !!!!  I love my doctors. I am so grateful to them

I  asked him about if i should get the HPV vaccine as a preventive measure to help stop either a recurrence or getting another type of cancer caused by HPV & he said he is going to ask another doctor who is a infectous disease specialist if i should because he doesn't know if it will help if i already have the HPV virus so i will let you know when i hear back but he was adamant my daughter ( and every child) should get the vaccine as it can help prevent so many cancers including this one. He said it is really important for kids to get it, preferably before starting to have sex

I also have have x1 more appoinment with my Surgeon in October of this year which will be the last and I think she is the one who will decide if I will get any last scans etc before i finish up but if he was worried he would have ordered whatever i needed before this appoinment.

All this was free at our public hospital.  I guess if i really wanted to continue seeing him yearly for a check up after the 5 years is up i could go see him at the private hospital he also consults at and pay for the appoinment/and or scans etc . i think if they were concerned they would keep giving me appoinments at our public hospital for free but he is really happy with me as is my surgeon so i really don't see the point as i am now super aware of my body and any changes i would be straight back at the public hospital to see him. i will ask him and my surgeon at my last appoinments if they think it is a good idea to continue having yearly check ups with them at the private hospital and do what they recomend. 

i will update when i hear more about the HPV vaccine recomendations