Scanxiety - please help!

Adam26

Hi everyone,

So my mum has a sigmoidoscopy booked for 11 days time and she has an MRI in about 3/4 weeks which will take place 8 months after she finished her chemoradiotherapy. 

The main issue is that basically in her oncologist's letter which declared she was 3 months NED back in January, it said she would have another MRI or CT after a year post treatment, because there was "nothing there to scan". This felt odd to me at the time as I know you guys have your follow up scans more frequently. 

A few weeks ago at a routine meeting, he did a digital rectal examination and there he felt what he believed to be scar tissue, hence why she is now having the MRI and sigmoidoscopy.

My question: Given that her MRI after only 3 months was "completely clear with nothing to scan" does that mean this scar tissue has appeared subsequently? I would have thought any scar tissue present now would also have been present back in January? Can scar tissue appear as time goes on? Now she is worried that the oncologist thinks it's a reoccurrence because obviously the previous plan was to not do anything until the 1 year post treatment date.

Adam26

Just a few quotations from

Just a few quotations from the letter: 

"On examination, she has no palpable adenopathy and there is some residual thickening at 6 o'clock which is most likely to represent scar tissue following her chemoradiotherapy. I have requested a repeat MRI and will also ask her surgeon to see her for his opinion and advice"

"I have reassured her as best as I can that this is likely to represent scar tissue given that she had a very early anal cancer that we would expect to have been cured by her chemoradiotherapy."

"I have done my best to reassure her but what her and her family are looking for is guarantees that her cancer is cured and of course whilst I believe this to be the case, there is an element of ongoing observation required"

"I will see her in a further 12 weeks with the up-to-date imaging and following her surgeon's opinion and will keep you informed on her progress throughout."

TraceyUSA

Adam

I think this is a good question to ask her doctors .  In my opinion, scar tissue and inflammation can occur anytime as the body heals and this is a long healing process. 

mp327

Adam26 said:

Just a few quotations from

Just a few quotations from the letter: 

"On examination, she has no palpable adenopathy and there is some residual thickening at 6 o'clock which is most likely to represent scar tissue following her chemoradiotherapy. I have requested a repeat MRI and will also ask her surgeon to see her for his opinion and advice"

"I have reassured her as best as I can that this is likely to represent scar tissue given that she had a very early anal cancer that we would expect to have been cured by her chemoradiotherapy."

"I have done my best to reassure her but what her and her family are looking for is guarantees that her cancer is cured and of course whilst I believe this to be the case, there is an element of ongoing observation required"

"I will see her in a further 12 weeks with the up-to-date imaging and following her surgeon's opinion and will keep you informed on her progress throughout."

Adam

Scar tissue can certainly appear months after treatment and also months after her last scan.  One example I can think of (which is different from where her scar tissue is) are adhesions in the intestines, which is scar tissue.  I do not believe I had any adhesions initially.  However, they began to form post-treatment, many months and perhaps even years after my treatment ended.  I was hospitalized in January 2013 for an intestinal blockage, thought to be caused by adhesions. 

One thing to keep in mind is that scar tissue that occurs internally cannot be treated like external scar tissue, such as when we cut ourselves.  External damage can be kept to a minimum with proper care--ointment that keeps the skin soft and reduces the formation of scar tissue, movement if it affects a joint, and massage.  That is not possible when the scar tissue is internal, so it is left to form. 

Believe me, the things reported to you and your mom on her scans and examinations are things that some of us have heard post-treatment on our follow-ups.  We all want to hear that we are free and clear of this disease and we'd like to have a written guarantee that it will never return.  That is unrealistic.  It sounds to me like her doctors are keeping a watchful eye on things just out of caution.  If they were really concerned that there was a recurrence, based on what her follow-ups show, I'm sure they would be doing further evaluations. 

I know it's difficult to step back, take a deep breath, and not let worry take over, but try to focus on how well she is doing.  I send good wishes to you both.

Martha

 

pializ

TraceyUSA said:

Adam

I think this is a good question to ask her doctors .  In my opinion, scar tissue and inflammation can occur anytime as the body heals and this is a long healing process. 

Adam

I think it's fair to say that once a diagnosis of cancer has been made, even though treatable, particularly in early diagnosis/stage as in your Mum's case, we will forever be aware that it could return. There are simply no guarantees to be had. I know this is not what you, your Mum or any of us want. But that is the nature of the beast. living with such uncertainty is difficult, and it always (for me and most if not all others) is exacerbated leading up to scans, DRE etc until the results are known. I just had to wait from 1st April (when Oncologist thought it had returned locally, & also was concerned about a recent ultrasound scan of liver & pancreas) to May 13th for my recent investigation results. It's a long time to be under so much stress without the other day to day stressors. 

it sounds like your Mum's team are just being thorough & doing their job, at the same time giving you both as much reassurance as is possible. But asking for cast iron guarantees is sadly not within their remit. 

I hope your Mum doesn't have to wait too long for her results & that all goes well. 

Hugs to you both

Liz

Adam26

OK thanks guys!
Our

OK thanks guys!

Our oncologist had never told us about scar tissue and to expect or at least anticipate it. This is all new to us. I did some reading on here and the net and it seems scar tissue is quite common. Hopefully it forms and then that's it, but I've heard it can change shale etc which can't benvery comfortable!

Sigmoidoscopy next Tuesday.

jcruz

Adam26 said:

OK thanks guys!
Our

OK thanks guys!

Our oncologist had never told us about scar tissue and to expect or at least anticipate it. This is all new to us. I did some reading on here and the net and it seems scar tissue is quite common. Hopefully it forms and then that's it, but I've heard it can change shale etc which can't benvery comfortable!

Sigmoidoscopy next Tuesday.

scar tissue

Adam

I had scar tissue (still have).  The first PET scan I had was 2 months post-treatment and the scar tissue was inflamed and read at just a high enough number that I had a biopsy done.  No cancer just scar tissue.

My best to your mother

Janet

Adam26

Hi Janet, thank you very

Hi Janet, thank you very much!

The thing is, my mum's 3 month post-treatment MRI revealed no scar tissue, now she's 6/7 momths out and the oncologist felt it. So it must have appeared after her first MRI which is what is causing all the anxiety.

danker

anxiety

The way to deal with anxiety is just assume all is,or will be the best result posssible.  Then no more anxiety!!! LOL

Ouch_Ouch_Ouch

Adam26 said:

OK thanks guys!
Our

OK thanks guys!

Our oncologist had never told us about scar tissue and to expect or at least anticipate it. This is all new to us. I did some reading on here and the net and it seems scar tissue is quite common. Hopefully it forms and then that's it, but I've heard it can change shale etc which can't benvery comfortable!

Sigmoidoscopy next Tuesday.

Me, too.

I was not told about the possibility of scar tissue, either, yet here I am, also in that situation.

>_<

About the MRI not mentioning scar tissue in the report, remember that each MD is different in their style. One doc may report every little thing they see, scaring your Mum to pieces with what are normal findings, while another will mention only the very most clinically impotant finding. That scarring wasn't mentioned in the report doesn't mean it wasn't already forming.

Adam26

Thanks guys,
Appoinment

Thanks guys,

Appoinment tomorrow with the same surgeon who initially diagnosed my mum back in June last year - almost exactly a year later and at the exact same time of day - I think there is a lot of anxiety right now as this surgeon is not known for his people skills. 

So scar tissue can take 3 months before it starts to form? After the consultation for the 3 month NED, the onc said "there's nothing to scan" which sounded odd as there must have been inflammation at least. Wish us luck!

pializ

Adam26 said:

Thanks guys,
Appoinment

Thanks guys,

Appoinment tomorrow with the same surgeon who initially diagnosed my mum back in June last year - almost exactly a year later and at the exact same time of day - I think there is a lot of anxiety right now as this surgeon is not known for his people skills. 

So scar tissue can take 3 months before it starts to form? After the consultation for the 3 month NED, the onc said "there's nothing to scan" which sounded odd as there must have been inflammation at least. Wish us luck!

Adam

Hi Adam,

Good luck to you & your Mum tomorrow! I hope all goes well and your Mum stays in the 'so far, so good' club. 

let us know how it goes

Liz (from across the bridge)

mp327

Adam26 said:

Thanks guys,
Appoinment

Thanks guys,

Appoinment tomorrow with the same surgeon who initially diagnosed my mum back in June last year - almost exactly a year later and at the exact same time of day - I think there is a lot of anxiety right now as this surgeon is not known for his people skills. 

So scar tissue can take 3 months before it starts to form? After the consultation for the 3 month NED, the onc said "there's nothing to scan" which sounded odd as there must have been inflammation at least. Wish us luck!

Adam

Wishing your mom all good news tomorrow and sending up prayers for both of you!

Martha