A big mystery solved?!?!

[claudine]

Thank you for sharing your experience, Riki. There's no point in sugar-coating the reality, it's going to be unpleasant... My poor husband is no stranger to pain, from brutal Crohn's disease attacks as a teenager to his messed up vertebrae 4 years ago to permanent neuropathy in his feet now. I will do my best to help him weather this new challenge.

We met with the radiation onc yesterday and it will be 3D-CRT, even though IMRT is available here and she's trained in it. I asked about it and she said that CRT is still the recommended standard, and I can tell that DH is very uncomfortable with me challenging the process. She talked about wait-and-watch but isn't recommending it, DH would rather have surgery anyway. As for proton beam therapy, the rectal surgeon hasn't worked with patients who've received it and logistically, it would be complicated.

In the end, it comes down to one thing - this isn't my cancer. I can make suggestions, but it's DH's life and body, so I will go with his choice and be as supportive as I can! Tomorrow is MRI, chemoradiation to start next Wednesday. On we go

[JJH]

...In the end, it comes down to one thing - this isn't my cancer. I can make suggestions, but it's DH's life and body, so I will go with his choice and be as supportive as I can! Tomorrow is MRI, chemoradiation to start next Wednesday...

Claudine,

If you want to make suggestions to DH, I can give you a few thoughts you might want to consider.

For the MRI, I think that it would be important to find out where, exactly, the tumor is located, its shape, and its size, etc. If I were the patient, I would want to know where the tumor is located with respect to the L3-L5 lumbar vertebrae, and where it is located with respect to the S2-S4 sacral vertebrae, and whether or not it is mainly on the posterior wall of the rectum (very near the spine and where the previous radiation occurred) or on the opposite wall of the rectum. Also, whether the tumor is more or less linear in shape (like a sausage) or more circular in shape (like a donut) and embedded in a fold of the rectum. In addition, I would want to know how low the lower edge of the tumor is with respect to the anal sphincter muscles.

Your DH might not be interested at all in any of these details, but I would be interested because I think it would give some idea how difficult it would be for the surgeon to do a total mesorectal excision (TME) with clear margins all around -- proximal, distal, and circumferential, and how difficult it would be to do the surgery as a Sphincter Sparing Operation (SSO). Also, I think it would give some idea how difficult it would be for the surgeon to do the resection without causing damage to the uro-genital functions that are controlled in part by the afferent and efferent nerves coming out of the sacral vertebrae.

...From the S2, S3 and S4 arise the pudendal nerve and parasympathetic fibers whose electrical potential supply the descending colon and rectum, urinary bladder and genital organs. These pathways have both afferent and efferent fibers and, this way, they are responsible for conduction of sensory information from these pelvic organs to the central nervous system (CNS) and motor impulses from the CNS to the pelvis that control the movements of these pelvic organs.

The pudendal nerve and parasympathetic fibers arise from S2, S3, and S4. They supply the descending colon and rectum, urinary bladder, and genital organs. These pathways have both afferent and efferent fibers.

Ref: https://en.m.wikipedia.org/wiki/Pudendal_nerve

Pudendal nerve diagram

I have a number of other thoughts about the 3D-CRT regimen, and about the range of surgical options available to the surgeon, but I'm not sure it's worthwhile going into any of this if DH is not interested in challenging what the doctors want to propose.

[claudine]

but I'm not sure it's worthwhile going into any of this if DH is not interested in challenging what the doctors want to propose.

Correct. As a teenager DH was traumatized by his experience with Crohn's and the way he was (mis)treated by the medical establishment; you may think that would make him more critical and ready to challenge it, but not the case. Any second spent thinking about his condition generates an enormous amount of stress; there's no way he would have any energy/desire to question the treatment presented to him. So it is.

I am still benefitting enormously from this forum, as it allows me to be much better prepared for what lies ahead. I am the one reading papers, asking questions, perusing his medical reports (he doesn't even look at results), and even though I have little influence on his choices, it makes me feel better, so thank you all!

[JJH]

... My feeling is that DH will prefer to stay local for this, in order to continue working....

Claudine -

You mentioned earlier that DH would want to continue working throughout his treatment period.

There are others on this forum who have expressed the same desire, for example NHMike, Chemo Sabe, and many others. Here is a summary of Chemo Sabe's experience with neoadjuvant chemo/radiation and his followup adjuvant chemotherapy:

...I worked every day during my pre-op chemo radiation. Most folks do. I also worked every day of the 6 months of post-op chemo I had to do (except infusion days). Xeloda is not without side effects and can literally take the skin off your hands and feet. You need to use lots of lotion. Other than that, there is fatigue there and just a general feeling of blah. Post surgery I never felt much better than crappy but it did not stop my life. I still did everything I wanted.

I myself did 5 weeks of adjuvant (i.e., post-surgery) IMRT chemo/radiation, but my experience is not directly relevant to what your DH will be going through. This is because he will be eating and drinking every day and there will be stool coming through the irradiated rectum on a regular basis, and that is what really causes the pain. In my case, I had a diverting ileostomy during the whole chemo/radiation period and my new neo-rectum was off-line and inactive the whole time. I worked 8 to 10 hours a day, seven days a week, with no problem, but that was because the effective side effects of adjuvant chemo/radiation are very different from those of neoadjuvant chemo/radiation.

[claudine]

Thank you JJH, there's nothing like first-hand testimonies. Yes, DH is planning to keep working, like he's done ever since this whole saga started almost 4 years ago. He's a university professor and lab director, but he's only teaching 3 hours a week (MWF 11-noon); the rest is prep and research, which gives him a lot of flexibility. Spring is typically when he does the bulk of his research so it will likely need to be curtailed a bit. Mostly we want to make sure he'll be in ok shape (either pre or post surgery) to go to our daughter's college graduation mid May

[JJH]

.. My poor husband is no stranger to pain, from brutal Crohn's disease attacks as a teenager to his messed up vertebrae 4 years ago to permanent neuropathy in his feet now. I will do my best to help him weather this new challenge...

We met with the radiation onc yesterday and it will be 3D-CRT, even though IMRT is available here and she's trained in it. I asked about it and she said that CRT is still the recommended standard...

In the end, it comes down to one thing - this isn't my cancer. I can make suggestions, but it's DH's life and body, so I will go with his choice and be as supportive as I can! Tomorrow is MRI, chemoradiation to start next Wednesday. On we go

Claudine -

With 3D-CRT starting as soon as next Wednesday (February 16th), there are a few things that should be attended to right now if DH wants to have a relatively trouble-free experience with this kind of treatment. Ideally, the radiation oncologist should have already given DH some sort of "Patient Guide to Neoadjuvant Chemo/Radiation Therapy" document. But if she didn't do this and didn't fully explain everything before getting DH to sign the Informed Consent form, then either you or DH (or both) need to do some more homework now to fill in the gaps ... for the following reasons:

• There are some things that a patient needs to be informed about so that each of the 3D-CRT sessions achieves its objective. For example, the patient must not move around or fidget restlessly during the 20 to 30 minute session, otherwise the radiation beams may not reach their intended target. Also, if the 3D-CRT protocol requires the patient to have an empty bladder (or a full bladder) at the start of each radiation session, then the patient must follow these instructions before each and every radiation session, otherwise the machine's targeting software might get confused about where the relevant pelvic organs are located.
  .
• There are some things that a patient needs to be informed about vis-à-vis products that either should or should not be used for treating radiation proctitis. If a patient goes to the local pharmacy (or to Amazon) and simply buys products without reading the relevant nursing guidelines for treating radiation proctitis, then they may end up buying things that are actually harmful. For example, any barrier cream that contains zinc oxide will likely potentiate the radiation intensity on the external perineal skin and lead to skin damage, severe pain, and severe excoriation that may then lead to infections that need to be treated with antibiotics.
  
  Here are some nursing guidelines on how to treat fecal incontinence. These guidelines might be relevant because the Xeloda used as a radiosensitizer will generally trigger some bouts of uncontrollable diarrhea that need to be managed in a proper way, not by wiping the perineal skin with harsh wet-wipe tissues or rough toilet paper or by sloshing zinc-oxide barrier cream on the skin just prior to a radiation session.
  
  A Quick Reference Guide to Fecal Incontinence
  https://cdn.ymaws.com/member.wocn.org/resource/resmgr/document_library/A_Quick_Ref_Guide_FI__2013_.pdf
  
  Here are some additional links that might be helpful in preparing for pelvic radiation and its side effects:
  
  Types of targeted rectal radiation
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445
  
  Preparation for neo-adjuvant chemo/radiation (rectal cancer patients)
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=63715&p=500312#p500312
  
  Radiation Therapy Side Effects and Ways to Manage Them
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44619&p=321925#p321925

[claudine]

Thanks for all the doc - will read. DH is the last person who would order thing online without discussing with doctors. As for starting Wednesday we’ll see, he woke up with chills and sore throat so we may have to postpone by a few days if it’s covid!

On the good news side of things, the MRI came back with the following results:

Distance from external anal verge to inferior margin of tumor: 8.1 cm
Distance from inferior margin of tumor to top of anal canal: 4.0 cm
Rectal tumor measures 2.7 cm in craniocaudal length.
Location relative to the anterior peritoneal reflection: Below.
Rectal mass shape: polypoid.
Mass centered on the posterior rectal wall.
If non-circumferential, clock face position: 6 o'clock
Mucinous component: No

Tumor Depth of Invasion/Stage:
Extramural depth of invasion beyond muscularis propria (in mm): 0.
MR T-Stage: T1-2
Anal Sphincter involvement: No. Not applicable (tumor above puborectalis sling).
Mesorectal fascia Involvement (MRF):Mesorectal Fascia/Circumferential Resection Margin: Not involved .
Shortest distance between the definitive tumor margin and the MFR (in mm and location): 10 mm (series 8, image 21)
Any tumor implants, spiculations or definitively involved nodes closer to MRF (distance in mm and location): Not Applicable
Extramural Vascular Invasion: Absent.

Mesorectal Lymph Nodes:
Suspicious mesorectal lymph nodes (irregular borders, mixed signal or >8 mm):Absent.

Pelvic Lymph Nodes:
Suspicious pelvic lymph nodes (suspicious = mixed signal or irregularborders, and/or short axis > or less than 10mm) : Absent.

[JJH]

...Next steps are: MRI of pelvis on the 11th; meeting with radiologist same day (but radiations won’t start that day, probably the following week); and meeting with well regarded rectal surgeon on the 22nd..

Claudine -

Now that you have the MRI report with an interpretation of findings, you no doubt know a lot more about the tumor now than you knew before.

This report will be very useful for the surgeon to have in hand as he maps out strategies for dealing with the tumor.

What options for surgery will the surgeon likely consider at your meeting next week on the 22nd? Well, it's hard for me to say, but the main options seem to be:

For rectal cancer, there are a number of surgical possibilities, including AR (anterior resection) LAR (low anterior resection), ULAR (ultra low anterior resection), APR (abdomino-perineal resection), PE (pelvic extenteration), TE (trans-anal excision), TME (total mesorectal excision) TAMIS (trans anal minimally invasive surgery), TEM  (trans-anal endoscopic microsurgery), ESD (endoscopic submucosal dissection), TASER (trans anal submucosal endoscopic resection). The surgeon must determine the best approach to take given the constraints and circumstances.  And for some of these options, a procedure to create a leak-proof anastomosis junction must be incorporated into the overall surgical procedure

In addition, the surgeon must assess whether a temporary ileostomy or a permanent colostomy will be required. And in some cases the surgeon may recommend an additional J-pouch surgery or some other type of reconstructive procedure to enhance the storage capacity of the post-surgery neo-rectum

Off-hand, it looks to me like this new tumor is now classified as a cT2N0Mx tumor, and I have the impression that your surgeon would prefer the TAMIS procedure, but I might be totally wrong.

In any event, if I were the patient I would want to spend some time this week reading up on the available surgical options so that I could follow what the surgeon will be saying at the meetiing.

Also, there is the surgery modality to consider. Will the recommended surgery be an open surgery, a laparoscopic surgery, a laparoscopic-assisted hybrid surgery, a robotic surgery, or what? This is something that needs to be discussed and clarified before signing an Informed Consent form.

[Rock_Robster]

Overall that sounds like a pretty “good” result to me: T1-2 tumor with no particularly invasive or higher risk features, no suspicious nodes. Seems like a very good probability for an R0 resection.

Any mention of Lymphovascular or Perineural Invasion (LVI or PVI?). This is potentially relevant for determining risk factors for adjuvant treatment.

It’s also worth asking roughly how many mesorectal lymph nodes they intend to take during the procedure; I believe studies correlate having at least 15 sampled with better outcomes. I had 27 taken of which one tested positive (so I was pleased it was out…).

I’m not sure if TAMIS would be on the table given that tumor height, but can’t hurt to ask. Robotic is an interesting one to discuss - it is generally less invasive with fewer complications, shorter recovery and similar outcomes IF the surgeon is very experienced in robotic surgery. This last part is important - you don’t want to be someone’s training ground if you can avoid it as complication and/or local recurrence rates can be higher than normal surgery if they are inexperienced. If they don’t do a lot of robotic, you’re likely better off with a lapro or even hand-assist lapro. I had a robotic resection with a temporary ileostomy; the surgical scars are amazingly tiny and the post-op pain was pretty minimal (the ileostomy scar is still fairly substantial, of course). I did have a drain that took a few extra days to stop which meant I ended up with 8 days in hospital afterward, rather than the usual 4-6 that my surgeon suggested.

Based on the location of the tumor and planned procedure, it’s worth having an honest conversation about the likely loss and return of urinary, erectile and bowel function. (I should say, all of mine returned to very close to normal but on a time frame ranging from days to years!).

Hope the Covid test is negative!

[claudine]

Thanks guys! I’d be surprised if surgery was robotic - our town isn’t all that big, I’m not sure the surgeon would get the chance to do these a lot, but we’ll see.
My main question right now is whether neoadjuvant chemoradiation will proceed as planned, given that it’s a T2 tumor and no lymph nodes are involved, or if protocol would switch to surgery first, then adjuvant chemo? I will call onc, although I suspect he’ll recommend sticking to plan since this is DH’s second primary cancer, so who knows what may be lurking in there...

[claudine]

You’re a champion, Claudine.

Aww thanks but really, you the fighters are the true champions! Here’s to a great looking scan, prayingforccr!

[Rock_Robster]

Thanks guys! I’d be surprised if surgery was robotic - our town isn’t all that big, I’m not sure the surgeon would get the chance to do these a lot, but we’ll see.
My main question right now is whether neoadjuvant chemoradiation will proceed as planned, given that it’s a T2 tumor and no lymph nodes are involved, or if protocol would switch to surgery first, then adjuvant chemo? I will call onc, although I suspect he’ll recommend sticking to plan since this is DH’s second primary cancer, so who knows what may be lurking in there...

No worries. Neoadjuvant chemoradiation is generally standard of care for rectal cancer regardless of T/N/M stage and other risk factors, so indeed I wouldn’t be surprised if they stick with this in your husband’s case. However his situation is indeed fairly unique so I guess other approaches are definitely possible.

The staging and risk factors usually drive the decision around adjuvant chemotherapy, which of course is again a bit different for you guys.

[roadrunner]

Claudine: I agree with RR that your husband’s situation seems “fairly unique.” I know your husband wants to stay with the locals and doesn’t like discussing things, but would he perhaps consider a remote consult? I know MSK does these, and I believe other major cancer centers do as well. Perhaps he would be ok if he didn’t have to do as much? Sorry in advance for raising this, I don’t want to be irritating, but it really may be beneficial. The reason I thought I should post was that you’re right that radiation or surgery may be a question for your husband where it isn’t for most people. I don’t know what his radiation was before (maybe SBRT?), but too much radiation may be a real issue, locally or systemically. Or for the surgeon. Keep in mind that the immune system keeps cancers in check, and lots of radiation isn’t good for the immune system (particularly wide field radiation with many fractions (which long course would be here)). And that’s just one of many issues here from your posts. Someone else (JJH?) asked about overlapping fields. And are they 100% sure it’s a new cancer? Etc.

I hope I didn’t overstep here. If I did I am truly sorry. My dad faced this the way your husband is, and I understand and fully respect that. It’s just that there are lots of moving pieces here, so it may be super crucial to have them all in front of you. Good luck!

[claudine]

Do not worry at all about overstepping, roadrunner - there's a reason I post here, not my husband, and I appreciate all the input! To answer your questions:

I don’t know what his radiation was before (maybe SBRT?)

He had wide field EBRT for 4 weeks, which didn't really work, then SBRT (3 days), which did. When we met with the radiation oncologist (which is the same one who did the original EBRT; we did travel to a larger hospital, OHSU, for SBRT), she made mention of previous radiation and said that this new one would be tailored to avoid the area that was irradiated before.

And are they 100% sure it’s a new cancer?

This is what the oncologist wrote in DH's chart: " I suspect this is a second primary as this would be an unusual place for metastatic disease"
So, no, they're not 100% sure! I still wonder if it could be where the cancer started (even though nothing was seen there 4 years ago). I guess we'll never know

Despite all this, I do not think my husband would consider a remote consult. He's quite the fatalist and decided from the get-go that "either they'll cure me, or they won't", and he's putting his trust 100% in the local team. To their credit, they are the ones who sent him to OHSU for SBRT, even though they have the capability here - they estimated he would get better care there. So... I'll continue perusing the forum, where I learn a lot, and will keep you all updated - if things don't go great for DH, maybe that will be warnings for future visitors?

[claudine]

YES !!! Called the onc and he agrees that there's no reason to start neoadjuvant chemoradiation until DH has met with the surgeon (the 22). That doesn't mean that it won't have to be done; but it is worth postponing by a week. I'm glad - I was worried things were proceeding too fast, without us having all the data in hand.