Advice please - Nodule found

Adam26
Adam26 Member Posts: 125
in Anal Cancer #1

Hi guys,

Please help me with your advice as my mum is really depressed.

So after being declared 3 months NED in January 2015 for a T1/NO/MO anal lesion, she had her examination today. Her surgeon did a telescopic analysis and found 1) an anal fissure and 2) a nodule which was located where the anal lesion was. She is due a biopsy in a few weeks for the nodule and he thinks it's "probably scar tissue" and also mentioned "probably harmless" at a later point and basically just wants to confirm it with the biopsy, since he can't do it 100% with his eyes I guess.

I've seen similar things on this forum (people having biopsies, pet scans on scar tissue etc) and that has re-assured her to an extent. So, in order to reassure my mum and myself that is is normal, can people please reply with any anecdotes concerning this post-NED? It's quite hard assembling all the stories from over the years on the forum, but I'd just like to know how common this is? My mum's so down now as she just wants to live her life again and is now eight back in the cancer world.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Adam

    Scar tissue is so very common after this treatment.  Really, it is.  I know it's hard for your mom and you not to worry, so I won't tell you not to.  But try to think of it in this way.  Radiation literally burns the tissue away.  If you've ever had a burn that was serious, then you may remember having scar tissue form after the burn has healed.  Cuts are the same way.  I'm glad your mom's doctor is not just dismissing this as scar tissue and intends to do a biopsy to rule out anything sinister.  It sounds like she's in good hands.  I will keep both of you in my thoughts and prayers that this will turn out all good--which I believe it will!

    Martha

  • Adam26
    Adam26 Member Posts: 125
    #3
    mp327 said:

    Adam

    Scar tissue is so very common after this treatment.  Really, it is.  I know it's hard for your mom and you not to worry, so I won't tell you not to.  But try to think of it in this way.  Radiation literally burns the tissue away.  If you've ever had a burn that was serious, then you may remember having scar tissue form after the burn has healed.  Cuts are the same way.  I'm glad your mom's doctor is not just dismissing this as scar tissue and intends to do a biopsy to rule out anything sinister.  It sounds like she's in good hands.  I will keep both of you in my thoughts and prayers that this will turn out all good--which I believe it will!

    Martha

    Hi Martha,
    Sorry for such a

    Hi Martha,

    Sorry for such a quick reply. Thank you very much for that pc and for your prayers.

    Can I just ask, is there any significance in the word "nodule"? I've been searching through previous threads on here and it seems post-treatment biopsies which turn out to be scar tissue are really common, however the word "nodule" seems to only be used with the lungs. Is it possible for a nodule to just be scar tissue? Sure it must be if that's what the surgeon thinks it is, but my mum's so on edge right now, she's questioning everything! They described it as a thickening before that, I'm guessing "nodule" could be replaced with simply "bump", "mass", "thickening" etc?

  • jcruz
    jcruz Member Posts: 379 Member
    #4
    Adam26 said:

    Hi Martha,
    Sorry for such a

    Hi Martha,

    Sorry for such a quick reply. Thank you very much for that pc and for your prayers.

    Can I just ask, is there any significance in the word "nodule"? I've been searching through previous threads on here and it seems post-treatment biopsies which turn out to be scar tissue are really common, however the word "nodule" seems to only be used with the lungs. Is it possible for a nodule to just be scar tissue? Sure it must be if that's what the surgeon thinks it is, but my mum's so on edge right now, she's questioning everything! They described it as a thickening before that, I'm guessing "nodule" could be replaced with simply "bump", "mass", "thickening" etc?

    Adam

    I don't remember what word was used to describe an area that was of concern after PET scan.  I do remember the doctors saying probably scar tissue but let's be sure.  I had 2 biopsies.  One just 3 months post-treatment and then another after 2 years.  Both times were nerve wracking for me and ultimately it was just scar tissue.

    I wish your mother the best and will keep her in my thoughts.

    Janet

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    Adam26 said:

    Hi Martha,
    Sorry for such a

    Hi Martha,

    Sorry for such a quick reply. Thank you very much for that pc and for your prayers.

    Can I just ask, is there any significance in the word "nodule"? I've been searching through previous threads on here and it seems post-treatment biopsies which turn out to be scar tissue are really common, however the word "nodule" seems to only be used with the lungs. Is it possible for a nodule to just be scar tissue? Sure it must be if that's what the surgeon thinks it is, but my mum's so on edge right now, she's questioning everything! They described it as a thickening before that, I'm guessing "nodule" could be replaced with simply "bump", "mass", "thickening" etc?

    Adam

    I don't feel qualified to answer your question as to the definition of the word "nodule."  I would try to focus on what the surgeon said--that it's scar tissue.  I'm sorry that this is so upsetting for your mom and you too.  I can understand how unnerving it can be.  Please let your mom know that she is in my prayers and so are you.

    Martha

  • Adam26
    Adam26 Member Posts: 125
    #6
    Thanks :)

    Thanks for your messages guys!

    The biopsy will be on June 18th and I imagine we'll get the results a few days after.

    Do you know if it's possible - speaking hypothetically - that during an MRI scan, a lesion could be hidden in the "folds of the anus" and therefore not seen? I'm sure this can't be right as the MRI takes multiple layered shots of the area, but just wondering.

    Also, is it two years or five years when somebody can be confident that the anal cancer won't return? I heard this was a cancer which is less likely to return anyway compared to others. Testicular cancer for example has quite high recurrence rates.

    My mum has cheered up a bit since your messages and she says thank you!

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    #7
    Adam26 said:

    Hi Martha,
    Sorry for such a

    Hi Martha,

    Sorry for such a quick reply. Thank you very much for that pc and for your prayers.

    Can I just ask, is there any significance in the word "nodule"? I've been searching through previous threads on here and it seems post-treatment biopsies which turn out to be scar tissue are really common, however the word "nodule" seems to only be used with the lungs. Is it possible for a nodule to just be scar tissue? Sure it must be if that's what the surgeon thinks it is, but my mum's so on edge right now, she's questioning everything! They described it as a thickening before that, I'm guessing "nodule" could be replaced with simply "bump", "mass", "thickening" etc?

    Poor Mummy!

    "Anal fissure" - YIKES! No wonder she has pain! I developed a couple during radiation treatment. The big one now takes every opportunity to break open again. Once broken open, it takes about 2 to 2-1/2 months to heal enough for the pain to stop. Irradiated tissues heal more slowing and incompletely than unassaulted tissues. Fissures feel like a deep paper cut with lemon juice poured on, making passing stools oh-so-much worse. I'm sure the MD has discussed treatment with her - keep her doing the sitz baths 2 or 3 x day (relaxes the inner sphincter and keeps the area clean); tell her to keep her stools soft (straining will make fissures worse) or keep them less loose if she has diarrhea (equally painful); and use the medicine the MD prescibes to keep that inner sphincter relaxed (high muscle tone = reduced blood flow and retarded healing).

    "I'm guessing "nodule" could be replaced with simply "bump", "mass", "thickening" etc?" You are probably right that the MD used "nodule" as a descriptive term and not a medical diagnosis. Have her call the MD and ask. She should tell him that the word is worrying her and she needs clarification. Likewise, the question about MRI findings. Again, have her ask the MD. In the future, be sure that she doesn't leave the office until the MD answers all questions.

  • mp327
    mp327 Member Posts: 4,440 Member
    #8
    Adam26 said:

    Thanks :)

    Thanks for your messages guys!

    The biopsy will be on June 18th and I imagine we'll get the results a few days after.

    Do you know if it's possible - speaking hypothetically - that during an MRI scan, a lesion could be hidden in the "folds of the anus" and therefore not seen? I'm sure this can't be right as the MRI takes multiple layered shots of the area, but just wondering.

    Also, is it two years or five years when somebody can be confident that the anal cancer won't return? I heard this was a cancer which is less likely to return anyway compared to others. Testicular cancer for example has quite high recurrence rates.

    My mum has cheered up a bit since your messages and she says thank you!

    Adam

    I can't answer your question about an anal lesion being obscured on an MRI, but I would think not.  IMO, that would make an MRI pretty much useless in evaluations of anal tumors and I know MRI's are commonly used.

    As for what period of time must lapse after treatment before one can presume anal cancer will not return, I'm not sure there's a hard and fast rule about this.  However, as we all know, 5 years seems to be the standard.  I do know that after 2 years, the chances of recurrence are greatly reduced.  It would seem that as each year passes, the chance would continue to decrease.  However, the reality of this beast is that it has a mind of its own and recurrence is always a possibility.

    In March I gave a presentation to a group of physicians at the annual conference of the International Anal Neoplasia Society and had the privilege of meeting Dr. Catherine Eng from M.D. Anderson in Houston.  Dr. Eng is, IMO, the top oncologist in the U.S. for treating anal cancer patients, specializing in metastatic cases.  As she and I were chatting after the session, she asked me how far out from treatment I was.  At that time, I was 6 1/2 years out and her words to me were "Well, then you are cured."  Now, as happy as I was to hear those words from her, I am not one to push my luck (call me superstitious if you will), so I will never use the word "cured" to describe myself. 

    I'm glad your mom is feeling better.  Please try not to worry unless and until there is something to worry about.

    Martha

  • Adam26
    Adam26 Member Posts: 125
    #9
    Hi guys,
     
    thanks for your

    Hi guys,

     

    thanks for your comments.

     

    We received the letter today from mum's surgeon and it said "spectra of residual disease is raised" - what in earth does that even mean??

    I don't understand how he can tell us that he thinks it's "probably scar tissue" and now he's written this, which seems like a complete opposite to me. What does spectra mean????? I'm so p*ssed off with all of this.

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #10
    Adam26 said:

    Hi guys,
     
    thanks for your

    Hi guys,

     

    thanks for your comments.

     

    We received the letter today from mum's surgeon and it said "spectra of residual disease is raised" - what in earth does that even mean??

    I don't understand how he can tell us that he thinks it's "probably scar tissue" and now he's written this, which seems like a complete opposite to me. What does spectra mean????? I'm so p*ssed off with all of this.

    Adam

    Try not to worry, I think the biopsy is on the 18th?  My thoughts are with your family.  I think there is a very high chance of it just being scar tissue as it was for so many others here.

     

     

  • mxperry220
    mxperry220 Member Posts: 493 Member
    #11
    Adam26 said:

    Hi guys,
     
    thanks for your

    Hi guys,

     

    thanks for your comments.

     

    We received the letter today from mum's surgeon and it said "spectra of residual disease is raised" - what in earth does that even mean??

    I don't understand how he can tell us that he thinks it's "probably scar tissue" and now he's written this, which seems like a complete opposite to me. What does spectra mean????? I'm so p*ssed off with all of this.

    Definition of Spectra

    See link below for spectra definition.

    http://dictionary.reference.com/browse/spectra

    Mike

  • Adam26
    Adam26 Member Posts: 125
    #12
    Thanks for your relies guys

    Thanks for your relies guys and thank you Phoebe!

    Its been pushed forward now to the 16th as she is having it done with a different surgeon.

    Thanks for the link Mike, I still can't seem to find anything that fits. Maybe "chances of residual disease is raised (due to the nodule found) I don't know. All I know is he seemem pretty positive that it was "probably scar tissue" and "probably harmless" - now I don't know what to think. I know spectra is Latin, I had never used it before!

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #13
    Adam

    Sorry to hear you Mum is going through this.

    I went for a high-resolution anoscopy in Jan. and expected to wake up and hear all was good, instead I was told they saw a suspicious area and did a biopsy.  The wait from Friday to Monday for lab results was excruciating and I'm sure you can imagine some of the thoughts that were going through my head.  It ended up being chronic inflammation and scar tissue. 

    I look at all my reports and results and know that the terminology can be scary and heard to understand.  Not being a physician makes it difficult to interpret.  I have also found that they will word things a particular way to get it covered by insurance or to protect themselves.

    Wishing you all the best!

    Tracey

  • Adam26
    Adam26 Member Posts: 125
    #14
    Thanks Tracey!!
    I'm glad

    Thanks Tracey!!

    I'm glad yours was only scar tissue and inflammation!! 

    It's just such a complicated wording!!

  • Adam26
    Adam26 Member Posts: 125
    #15
    Hi,
    My mum just wanted to say

    Hi,

    My mum just wanted to say thank you for your messages which I've sent her (she's been too anxious to come on again). Looks like it could be the 7th July when we find out the results and we've known about this thickening/nodule since the 5th May so it's been a really stressful wait. She finds your messages though about yourselves on occasion being biopsied and the results turning out as scar tissue really uplifting. Fingers crossed this is the case with us. We've learnt more from this forum r.e biopsies, scar tissue, inflammation, urgencies etc than we have done from our oncologist and surgeon, so thank you!

    MRI on the 13th June, Biopsy on the 16th. Still wish I knew what spectra was, spent hours looking on google and can't seem to find a decent fit. By the time I found a definition that fits the sentence we'll probably have the results anyway!!!!!

  • Adam26
    Adam26 Member Posts: 125
    #16
    Biopsy tomorrow, fingers

    Biopsy tomorrow, fingers crossed!

  • pializ
    pializ Member Posts: 508 Member
    #17
    Adam26 said:

    Biopsy tomorrow, fingers

    Biopsy tomorrow, fingers crossed!

    Adam

    hi Adam and Carol,

    i will keep my fingers crossed for you both. Hopefully it is just the development of scar tissue. Whilst that's not so nice to hear, it is definitely the preferable result. 

    We just returned from a lovely weekend in the Cotswolds. Beautiful part of the country & even though it was pretty miserable weather on Saturday, it couldn't dampen our enthusiasm.

    Best wishes

    Liz

  • Adam26
    Adam26 Member Posts: 125
    #18
    pializ said:

    Adam

    hi Adam and Carol,

    i will keep my fingers crossed for you both. Hopefully it is just the development of scar tissue. Whilst that's not so nice to hear, it is definitely the preferable result. 

    We just returned from a lovely weekend in the Cotswolds. Beautiful part of the country & even though it was pretty miserable weather on Saturday, it couldn't dampen our enthusiasm.

    Best wishes

    Liz

    Thanks Liz,
    I hope you had a

    Thanks Liz,

    I hope you had a nice time. I went there a few years back, hope you had fun!

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