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OMG 1012
Posts: 61
Joined: Dec 2012

Hi,

I finished TX on Jan 10th.  I have several questions about followup TX

I have already been to see RAD ONC 2 weeks after TX ended and was told all looks great, i am healing well and they want to see me again in 4 months (is this appt necessary)

or I am just going to go there and they will say yup you have some nice scars there--have a nice day.

I am waiting for scheduling of appt for a CT scan should be in the next 2 weeks so i have results prior to appt with chemo Dr the 1st week of March

and then I have appt with Colon Rectal Dr the 2nd week in March.

How many Dr's do I need to follow up with?

is it necessary to see the RadOnc again?

Is it necessary to see the chemo Dr again?

I know that my co-pays are going to start kicking back in 60 days after TX---

I was under the impression that I should have 1 Dr keep tabs on me---and presumed it should be the colon rectal guy

and not have to go to all the appointments---AFTER my preliminary followup appointment

Thank You all so much for your posts, your information/experiences have been invaluable as i have gone on this journey

I have used many of your tips and advice as I struggled through this and I have no idea how I would have done it without you all

THANK YOU

XO

 

 

AZANNIE
Posts: 390
Joined: Mar 2011

I had two follow up appts with rad onc and since I didn't particularly care for him I asked my med onc if I needed to see rad onc anymore and he said no. I see med onc and colorectal dr every six months.

 

 

 

AZANNIE
Posts: 390
Joined: Mar 2011

I had two follow up appts with rad onc and since I didn't particularly care for him I asked my med onc if I needed to see rad onc anymore and he said no. I see med onc and colorectal dr every six months.

 

 

 

mxperry220
Posts: 361
Joined: Mar 2011

Seeing doctors are a way of life for anal cancer survivors.  I was Stage 2.  For the first two years I saw radiation oncologist, chemo doctor, and colorectal surgeon and primary care doctor every 90 days.  Then they went to every six months for a year.  I am a little over four years post treatment and see chemo doctor and colorectal surgeon once a year.

Hope this helps,

Mike

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

For the first two years post-treatment, I saw my med onc, rad onc and colorectal doctor every 3 months.  My med onc was the doctor who ordered my scans.  My rad onc would do a DRE and just discuss any post-treatment issues I was having.  My colorectal doc always did DRE and anoscope.  Also, she has done 3 post-treatment colonoscopies on me.  I am now over 4 1/2 years post treatment and am no longer seeing the rad onc.  I see my med onc and CR doctor every 6 months under normal circumstances.  However, I was hospitalized the week before last for an intestinal obstruction and will be seeing my CR doctor in one month and my med onc in 4 months after my next scan.  I am perhaps being followed more closely than most people.  For follow-up guidelines according to the National Comprehensive Cancer Network, check out there website NCCN.org and register to access the latest information.  Doctors seem to be all over the place on this and don't always follow these recommendations.  I think that at least for the first 2 years post-treatment, getting DRE and anoscope by the CR doctor every 6 months is a very good idea.

horsepad's picture
horsepad
Posts: 84
Joined: Apr 2012

I am 1 yr. 7 mo. since diagnosis.  I saw 2 radiation oncologists, plus the medical oncologist and liver surgeon every 3 months, then it was narrowed down to 1 radiation oncologist, medical oncologist and liver surgeon every 3 months.  I have cat scan every 3 months.  Blood work every 6 weeks.  For me the more doctors, tests the better.  It brings me comfort because of the worry I have of reoccurance.  I don't know if it makes any difference what stage you are at diagnosis.  I am stage 4, so maybe that is why they want to keep closer tabs on me.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

For the first year I saw my oncologist, surgeon (I didn't have surgery but he is the one that does the scopes) and radiation doctors every three months.  After the first year I saw my oncologist and surgeon (scopes) every 3 months up to year two.  After year two, oncologist  every 3 months, surgeon every 6 months.  Beginning of year 3 oncologist every 3 months surgeon every 9 months.  I am now 3 1/2 years and I will be seeing my oncologist every 6 months and surgeon every year. My oncologist said I will continue to see her every 6 months and that she will re-evaluate at the 5 year mark.  From her mouth to God's ears!

I have to say I'm happy about not having to go so often, but I miss the security of someone keeping tabs on me every 3 months.

Liz

 

 

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I saw the oncologist, radiation oncologist, and surgeon every 3 months for first 2 years. Now swithcing to 6 months. I have had no scans. For some reason doctors feel scans are too harmful and the benefit too low. I have a second cancer. Maybe they figure that I am dying anyway?

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

I don't have scans every time now either.  I'm not having a CT this trip because the doctors say at this point because of the additional radiation risk.  Something about standards changing?  I'll ask today.

LaCh
Posts: 514
Joined: Dec 2012

I've been told that I'll need a PET scan in four months but I've already told my doctor that that I'm not having any more PET scans for the very reason that you mention. If I receive a radioactive dye that dictates that I stay away from other humans for 7 hours, I don't see how that's ok for me.  Everything is a cost/benefit assessment and I see no benefit to submitting myself to more radiation.  I've told my gastroenterologist that she's welcome to do as many biopsies as she wants, as often as she wants, but more PET scans aren't negotiable. In any case, because of personal decisions that I've made, a PET scan isn't necessary.  Some patients are comforted by their doctors taking the reins and making the decisions. Some ara appalled by that and ask questions, challenge recomendations and don't simply do what they're told.  As I'm sure most readers have figured out by now, I'm the latter of the two and can tell you that it doesn't endear me to many doctors. That said, I have an excellent, personal, mutually respectful and rewarding relationship with my gastroenterologist who I adore. She isn't put off in the least by a patient like me.   As for the other two, the medical and radiation oncologists, they're history.  

Marynb
Posts: 1134
Joined: Aug 2012

Well, the doctors told me that a risk/benefit analysis showed that more scans have great potential for harm and they will not do more scans unless absolutely necessary. There was a study that came out a year or so ago? In some ways scans would give me more peace of mind, but I still have the dre and scopes, so I feel ok with it. I never needed a scan in the initial diagnosis. The tumor was identified by exam and biopsy. I wish there was one standard if care regarding follow up. Lorikat, let me know what they say.

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Just to clarify, I have scans every six months and have been on the six month scan routine since the end of year one. Agree that so many scans can be dangerous.  Catch 22 for me. Since it was in my lymph nodes I am at risk of it spreading to liver and lungs.  The scopes examine the original site only. 

Liz

eihtak
Posts: 850
Joined: Oct 2011

Its another one of those areas thats hard for me to take sides on. My scans are also about every 6months now, and I am 2yrs post treatment for anal cancer. It was though at my 1yr PET scan that a rare secretory carcinoma of the breast was found and then successfully treated. It was a rare cancer quite often missed on mammograms and would likely have not been found until too late without the PET scan. I am very worried about the radiation side effects but like you Liz also had lymph node involvement. I try to tell myself that some people are exposed to huge amounts of radiation because of where they work or live and are seemingly ok, but I'm not really convinced.

Prayers of health to all!

Marynb
Posts: 1134
Joined: Aug 2012

I am not a doctor and I have no opinion, except that scans would make me feel better, psychologically. I don't know what the accepted standard of care is. I assume they are following it, or risk a huge malpractice case.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

As I stated above, I am still getting scanned about twice a year and I'm at almost 4 1/2 years post-treatment.  This is at the urging of my medical oncologist who told me that I got the "big guns" of radiation during my treatment, not from the follow-up scans.  That said, I'm not sure about that.  However, your statement about scans making you feel better psychologically is true in my case.  Good scan results give me a great deal of comfort.  I am hoping that my next one will be my last though.  I am getting tired of scans, doctor's appts., etc.  It will be 5 years in June that I was diagnosed and I think I've reached my limit.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I'm still at wk5 for first chemoradiation at MDAnderson. I am being scheduled for chest/abdomen/pelvic CAT scans every 3 months. This is disturbing to me as well. But MDAnderson dismisses my concerns......there are some lung opacities which they want to monitor for change, my benign thyroid nodules have been changing size as well.....I'm t3n0m0 so far but that is all speculative as there are hundreds of lymph nodes and changes can be microscopic not visible on CAT scan or any other scan......

I'm quite uncertain about agreeing to q3mos scans....and I have to travel 200 miles from home to get to MDAnderson in Houston, so appts are not easy or cheap, as they involve hotel stays......I see no reason for being seen by radonc and surg and medonc and anybody else only to be told face to face results of cat scans.....I'm wondering if I can have a cat scan at home and then make appts for one day to review results. MDAnderson wants to do all inhouse as they do not trust "outside" scans. Isn't a scan a scan a scan? Not much individual discretion in the scan machine, I thought, unlike the radiation machines.

I'm surprised Mayrnb that you haven't had any post Tx scans? would the scans have picked up the second tumor sooner?

 

 

 

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

As I understand it (and I'm not a doctor, just an attentive patient), a scan is not just a scan. The doctors rely on the radiologist to read the scan, thus having it done at MD versus another facility may be of importance to them. Also important is the capability of those performing the scan. One radiologist may not be as capable as the next in capturing the necessary information.

As to Marynb's secondary cancer (which, Marynb, I hope gets resolved without additional pain or trauma or anything of the sort), I think it would depend on where it was. The catscan and petscan are localized and if the secondary cancer was outside of the scan area, no, it wouldn't have been detected.

Marynb
Posts: 1134
Joined: Aug 2012

Hi, I agree that all scans are not the same and a lot depends on the equipment and skill of the doctors reading the scans.

In my case, my second cancer is unrelated and was picked up on a highly specialized scan, not available at all hospitals.

Marynb
Posts: 1134
Joined: Aug 2012

Hi, I agree that all scans are not the same and a lot depends on the equipment and skill of the doctors reading the scans.

In my case, my second cancer is unrelated and was picked up on a highly specialized scan, not available at all hospitals.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

I travel 800 miles to Houston every three months.  The scans from my hometown were notlegible.

sephie's picture
sephie
Posts: 529
Joined: Apr 2009

no a scan is not a scan.....machines are upgraded at MDA.... the experience is far more at such an institution.... when i was diagnosed in 2009 , even tho  the protocol for anal cancer has been the same for 35 years,(with fewer APR surgeries),,  MDA had seen over 700 at the time where as some places had seen 5  or 10 or even just 2.... it is very hard to travel.... i only have to go 400 miles but it is worth it if you can do it..... also, at MDA,  they told me that after 2 years ,, the main doc in charge was the radiation team.... sounded odd to me but that is what i was told.... check into some of the other places to stay close by that might be less expensive....perhaps they would do your cat scans every 6 months instead of 3.... just ask....  thinking of you....sephie

Marynb
Posts: 1134
Joined: Aug 2012

You have been at this for a long time. There is an accepted standard of care for treatment, which we had. Is there, or is there not, an accepted standard of care for follow up?

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I would say that the guidelines put out by the NCCN (National Comprehensive Cancer Network) are the accepted standard of care.  I believe a lot of doctors follow these, but still, some do not.  Also, I think these guidelines drive the insurance companies when it comes to approvals for scans, etc.  You can access these guidelines on NCCN.org.

Angela_K
Posts: 374
Joined: Jan 2011

I, too, had to travel 200 mi for follow up.  The first two years I went every 3 to 4 months seeing my rad onc and surgical onc both on the same day. Usually overnight stays were not needed because of great coordination of care efforts.  They followed up with PET scans every four months for the first year and CT's every 6 months the second year.  Anoscopes every four months.  They told me the benefit of scanning outweighed the frequent low radiation PET risk.  I will now be scanned in some fashion every 6 months for 5 years. My med onc sees me once a year unless my other doc(s) questions something.  They are following the guidelines Martha refers to.

OMG 1012
Posts: 61
Joined: Dec 2012

RadOnc 2 weeks after TX ended and then 4 months

Chemo Dr.  6 weeks after TX ended and then 6 months

ALSO had a CT scan at 6 weeks

Colon Rectal Surgeon (who did not do surgery but is my NEW go to Dr, because he checked me after my routine hemmy surgery showed cancer)

6 weeks after TX ended he did a visual inspection and decided that I was to little and it would probable hurt to much that he scheduled a visit to the OR for a scope???

and within the next month I will go to the OR for a complete exam and he decided to do a colonoscopy of me since I am  "at that age" and I will be under anethesia anyway for the EUA.

Also scheduled visit with Gynocologist (wanted my area checked)--saw him last May but he had me come right in---test results due tomorrow.

LaCh
Posts: 514
Joined: Dec 2012

...just what I've chosen to do regarding followup. I don't recommend anything to anyone since these things are individual decisions, just as how much autonomy and self direction one wants away from one's doctors.  I've "fired" both my medical and radiation oncologists and don't expect to see either one again.  My gastroenterologist, a saint that fell off a cloud, has urged for a PET scan in a few months (I'm one month past Tx) and I told her "there will be no more PET scans," and the reason. "I've done a risk/benefit analysis"--yes, I have--"and I've deemed the benefit not worth the risk." I've told her that she's welcome to do as many biopsies as she wants and she's promised to revisit the PET scan question again, but I have no plans to have any.  In a for-profit system and a super litigious culture, it can be hard to separate medically indicated proceedures from those driven by profit and fear of prosecution (for perceived negligence if things go wrong).  For my part, I assume that my tumor is gone.  I'll have biopsies so that my gastroenterologist can know that too. But this is what I've chosen to do and don't advise it for anyone else. We all choose what feels right to us. This is what feels right to me. 

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

You are right, we all have to choose what we feel is right.  Unlike you, I choose not to have any biopsies unless something of concern is found on a follow-up exam.  My colorectal doctor and rad onc both share this opinion.  The problem with biopsies is the potential for slow or non-healing due to the radiation.  I say if nothing looks suspicious, don't go messing with it.  But that's just my opinion.  As for scans, my med onc is a big fan of them and I am due for another one in about 3 months.  He told me the real blast of radiation came when I got treatment, not from the scans.  I don't know if that's true, but my friend who is a radiologist concurs.  That said, I know there is still risk with scans, just as there is with follow-up biopsies.  Neither come without the potential for problems.  The bottom line is we have to do what we feel is best for us.

LaCh
Posts: 514
Joined: Dec 2012

...not to worry about any of it, but I'm not, not with slow healing from biopsies nor with recurrance nor with other problems. I just feel like it's a finished chapter in my life. Maybe I'm right, maybe I'm wrong but it's just how I feel. 

OMG 1012
Posts: 61
Joined: Dec 2012

to keep seeing all these Dr's as well.

I think I will most likely cancel my RAD ONC appt--what more can they do now?  4 months after TX?

also the chemo Dr.  feel I am done their as well especially since I didnt even get to see my Dr after all I have been through!

they sent in a nurse that I have never seen before ( I am pissed about this!) I really liked that Dr too--but for her to not take the time to see me after TX

I think is RUDE!  and I have no use for a Dr that doent follow up "personally" and I know she was their cause I saw her!

I do believe I will stick with the Colon rectal surgeon, I found him accidently (when the Hemmy turned out to be Cancer)

and he is awesome.  PLUS I will need to see him every few yrs anyways for colonoscopys.

I dont think it is necessary to see Rad Onc and chemo Dr anymore (and hope I never have the need to again!)

on the 10th it will be 2 months post TX and I feel pretty darn good :)

fatigue is slowly diminishing---

if anyone thinks I need to be more concerned about seeing my Dr's please let me know 

I appreciate ALL your opinions and posts

Thanks

 

AZANNIE
Posts: 390
Joined: Mar 2011

I continue to see my colorectal dr and med oncologist. I don't see the rad onc anymore - didn't particularly care for him anyway. I like the other two doctors. I'm 21 months post treatment.

Ann

pializ
Posts: 270
Joined: Nov 2012

I completed treatment on 25th January. At almost 4 weeks post TX I was reviewed by Oncologist and had DRE. I am due an MRI scan on 15th March and examination under anaesthetic on 15th April. I had a diagnosis of anal cancer including 2 lymph noes in the pelvis. I live in Wales and my oncologist will see me monthly initially with colorectal surgeon being involved in an ad hoc sort of way.  

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