A big mystery solved?!?!

[claudine]

Agenda - no but I assume he’ll go over the biopsy results, and discuss the next steps (chemoradiation or not, MRI or not, etc) then facilitate appointment with surgeon. The cancer team has weekly meetings during which I’m sure he discussed DH’s most recent findings.

[claudine]

Interesting metering with onc. In his opinion, This is neither the original primary nor a met, but a brand new cancer! He doesn’t think the original primary would have been « missed » for 4 years...
Regardless, he suggests we go after it aggressively, with curative intent (yay!). Chemoradiation for a while, rest, then ressection, as was the case for you Rock Robster. Unfortunately because DH has permanent neuropathy caused by oxaliplatin, chemo will be Xeloda only; hopefully that’ll do the trick anyway.

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 22. Rock Robster (and others who’ve had neoadjuvant chemoradiation too), if I may ask - how bad was it, were you able to keep working? Onc thinks that shouldn’t clobber DH too much.

[Gravelyguy]

Hi Claudine,

Any chance DH can get to a center that uses proton beam radiation? I did short course of proton beam at Mayo Rochester before surgery and it was a breeze, relative to everything else.

Dave

[claudine]

Thanks for the suggestion! It seems that the center closest to us is Seattle - and that’s still quite a ways away. How many visits did you have? My feeling is that DH will prefer to stay local for this, in order to continue working...
And of course there’s always the questions of whether insurance would approve or not.

[MadMed]

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 22. Rock Robster (and others who’ve had neoadjuvant chemoradiation too), if I may ask - how bad was it, were you able to keep working? Onc thinks that shouldn’t clobber DH too much.

Yes, I had 6 weeks of chemoradiation, 28 treatments only on weekdays. The first 4 weeks were a breeze, no effects from radiation, minor effects from xeloda. The last 2 weeks were rough, but only when I had a bowel movement, the rest of the time i was fine. I work from home and am at my desk a lot. That was no problem. Now mind you, i have a very low RC. So my whole bottom was radiated and would be painful. Another patient that had higher RC fared much better painwise. Might be noteworthy, i had IMRT Vmat radiation. It's more precise and does less collateral damage.

Best of luck going forward, a lot of people have their cancer completely wiped out from nCRT. Hope that's your DH's case too.

[claudine]

Thank you Madmed, it’s great to hear from those who’ve been through this! I’m not sure what kind of radiation will be administered, but we’d should know a lot more next Friday - both from the MRI (staging) and meeting with the radiation specialist. Wow, never a dull moment...

[Gravelyguy]

Thanks for the suggestion! It seems that the center closest to us is Seattle - and that’s still quite a ways away. How many visits did you have? My feeling is that DH will prefer to stay local for this, in order to continue working...
And of course there’s always the questions of whether insurance would approve or not.

Short course was 5 days then I had surgery a couple days later. Proton beam is very focused and also the depth of the beam can be adjusted so it can be aimed very precisely and avoid surrounding organs and tissue. This is a big deal for rectal cancer!

Dave

[claudine]

Meeting with radiologist has been pushed to Wednesday, I will definitely mention it; I know she's very open to sending patients to larger hospitals. When DH had EBRT for his L4 tumor and it didn't really work, she made recommendations for him to go to Portland for SBRT.

[roadrunner]

Claudine:

IMO this may be a very high-leverage point in your husband’s treatment. There are lots of options with lots of different implications. I can’t address everything here, but I will point at some issues:

(1) Type of RT: ERBT (wide field) used to be the way this was done, and I believe it still is in many places. It can be effective, but has more side effects and does not allow for optimal dose in many cases. Healthy tissue and structures receive more radiation than in other approaches, and the side effects can be significant and permanent (some include radiation proctitis, sexual side effects, urinary side effects, and immune issues (the pelvic bones are large)). IMRT is a better option, as it spares more healthy tissues and carries fewer side effects. Especially with an engaged, talented, caring radiation oncologist at the helm. Dave is right that proton beam therapy is a great option if available—it might well be the next SOC, but it sounds like it might be a challenge for you to access. I did IMRT and it worked very well. I have limited side effects (a few interesting bathroom experiences and a little lingering chronic radiation proctitis), and I achieved a near-complete clinical response (nCCR). YMMV, of course, but from what I’ve read, I’d want at least IMRT for this.

(2) Length of RT: The options are short-course (SC) or long-course (LC). LC was SOC to achieve greater response, with SC offered to folks who were frail or were unlikely to achieve a large response, but I believe that’s changing (at least in Europe), with some recent studies showing equivalent if not better results with fewer side effects for SC (but that’s just an impression on my part). I’d certainly ask about this though, or research it. LC is the 28 fractions referred to above in this discussion, SC is I think 5 or 6 fractions. Dose is also key: higher is better to achieve a complete response, but can increase side effects and complicate surgery if the rad onc doesn’t get it right. I did a max dose LC with IMRT, boosting with targeting at the end of treatment.

(3) Result/treatment plan. Usually chemorad is done to shrink tumors before resection (often TME). In recent years, a “watch & wait” (no removal of the rectum) protocol for complete responders has been developed, and is used in some places. Generally, you need a complete clinical response (CCR) to be put into that protocol, even if the center follows it. A small minority of patients achieve this (I think it’s around 15%, but I could be a bit off there). Results of this protocol are very good for those who qualify, and it avoids the often very significant side effects of surgery. (But note that surgical outcome itself depends on location of tumor (higher is better), skill of surgeon, and the approach to radiation, as well as biology.) Note also that if there is significant response it may continue to increase for a while after treatment, so interval before surgery should also be discussed.

Overall, you and your radiation oncologist should be aligned with your surgeon on your long-term treatment plan now, at the outset of chemorad, so you are all shooting for the same goal. (Choices made now matter.)

A caveat is that your husband had chemo before and may (I can’t tell) still have active disease beyond the rectum. I’m not sure how that would get folded in here, but I would discuss it with your team in connection with the above points.

Finally, chemorad is usually done with Xeloda regardless of prior treatment I believe.

[claudine]

Thanks for all this Roadrunner. I’ve no idea if IMRT is available here, but the short bio for the radiation oncologist says that she is trained in it. Will definitely ask on Wednesday! DH still has a lytic area in his L4, stable though. The PET and CT scans didn’t find anything else at this point.
And yes, onc said chemo would be Xeloda. DH has permanent neuropathy from oxaliplatin so that one is out.
Am very anxious to get MRI results. I wish he could get one sooner than next Friday, but in our covid-depleted hospital it seems difficult to get things scheduled sooner...

[beach sunrise]

Isn't RR awesome?!

[Rock_Robster]

Fantastic response from roadrunner; I have little to add. I would definitely look for IMRT or VMAT at a minimum. I did long-course IMRT (5 weeks); the first 3 weeks were very easy, the last 2 were pretty uncomfortable at times, but painkillers helped and there’s lots of tricks we can suggest when the time gets closer. Recovery afterward is fast thankfully. They will usually give a reduced dose Xeloda protocol (or 5FU infusion) along with it as a radiosensitiser. I had a complete metabolic response to radiation - meaning I was NED afterward on a PET, but still had pathological signs of disease in the resected tissue.

I would strongly consider researching short-course radiation. As roadrunner says it only takes a week, and results are looking to be very similar. It is the standard approach in Europe (it was offered to me when I was diagnosed in Amsterdam). But the big benefit is you don’t have to wait the 8-10 weeks afterward for a full response before surgery, so you can go to resection almost straight away. Some folks say side effects are a bit worse, but it’s all over much faster. I believe a lot of major centres (including MSK) are now offering short course, particularly to deal with resource constraints during Covid, and reduce number of visits and exposure time. If I was doing it again I would probably be pushing for short course IMRT (unless you’re really trying for a CCR to avoid surgery via W&W).

[JJH]

... Will definitely ask on Wednesday! ...

Another thing that DH could ask for on Wednesday is the name, model number and age (date placed in service) of the hospital's radiation equipment (linear accelerators, etc). This would be good to know because you could then look up the specifications on the Internet to see what you would be dealing with.

The same goes for any imaging or scanning equipment that the hospital may use (e.g., CT scanner, PET scanner, MRI scanner, Doppler ultrasound, etc.)

Sometimes what happens in small hospitals in remote locations is that they buy their equipment on the second-hand market so they can at least say that they have the capability for scanning, radiation, etc., but the technology underlying the second-hand equipment is not currently state-of-the-art.

Large cancer-center hospitals don't usually have this kind of problem because their equipment is often acquired with the help of large Federal grants to the doctors/researchers working at the hospital. Small, county hospitals don't usually have this kind of support, so they make do with whatever equipment they can afford.

Also, DH should be aware of different acronyms used by different radiotherapy equipment manufacturers to describe what their equipment is capable of doing, for example, 3D-CRT vs. IMRT, or VMAT vs. IMRT:

https://www.physicsforums.com/threads/3d-crt-vs-imrt-in-radiotherapy.819619

https://www.leevercancercenter.org/care-services/treatment-options/radiation-therapy/imrt-vmat/

[claudine]

All good suggestions, thanks JJH. Even though we're surrounded by grizzlies and mountain lions, we still have a fairly large cancer center so hopefully equipment is modern!

[Rikimaroo]

Hi Claudine,

Glad to hear they found it, sad to hear it might be new cancer, glad to hear that they have an action plan. Chemoradiation was brutal, the first 2 weeks was a breeze, the last 2 weeks were horrible and then 2 more weeks after that for things to get back to normal. When I pooped it felt like someone taken there hand and rubbing it all over your sunburned back/shoulder, intensified by 10x. It was really painful, painkillers helped, but not when your pooping, he is going to be grabbing the air when he poops, but he will get through it like so many of us.

Sorry for being so brutally honest, but I can't play it down, it really hurt!!!

Yes I went back to a bag, my life is so much easier with it, no more feeling tied to the toilet or random poop myself, or burned butt from going to many times. I gave it a year, and maybe if I waited longer things could of been better.

I wish you and your husband all the best and hope they get this one and it goes away. One mistake I made was that after 28 days chemoradiation (2017 for me) which was Xeloda/Radiation, my cancer was gone. I decided not to do surgery (LAR) and did get surveillance of the area 2x within a 6 month period and no cancer, however it came back after the 6 month cause I noticed blood in my stool again (if you know my story, which you probably do <3)

Keep us posted.

Rikimaroo