What to ask the radiation oncologist about prostate cancer?

Posted by surftohealth88 @surftohealth88, 1 day ago

Tomorrow we have zoom call with radiation oncologist that was recommended to us by prostate surgeon. Our meeting with surgeon was somewhat confusing since we did not expect to be told that my husband's case is not "urgent" and that we should talk to radiologist and as well to a doctor that does focal treatments. We were convinced that RP was the best approach, as we still think that RP is a way to go with cruciform and IDC but since we were told that we should have consultations with radiology, we agreed. I can say with whole honesty that we were like two deer caught in headlight after we were told that there is no rush, and we both failed to react with NEW questions and stared at "old ones" on our paper in confusion. So, in preparation for tomorrow's appointment I am asking for help with possible questions - any suggestion and advise is welcome. Thanks so much in advance < 3

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I’ve accumulated these questions over my time on this forum —> Questions to ask regarding prostate cancer external radiation treatments

You will want to weigh the risks, benefits, preferences, and outcomes of various treatment options; these can help guide your decision and help you start an open and candid conversation with your oncologist.

> What are the different external radiation treatment options (IMRT, SBRT, Proton) for my condition?
> Which kinds of external radiation therapy would treat my cancer best (IMRT, SBRT, or Proton)?
> Which are available at this facility?
> How many have you done?
> What are the procedures (When/Where/How) for each type of radiation treatment?
> What are the expected side and after-effects and risk factors with (the specific form of) radiation treatment?
> Will I require hormone therapy (Eligard, Lupron, Orgovyx) as part of my treatments?
> What side-effects should I expect from the hormone therapy?
> Is there a way to minimize the side-effects from the hormone therapy?
> What are the chances that I will suffer from complications during or after treatment (from either the radiation or the hormone therapy)?
> What are the chances that I will have GU, GI, ED, incontinence, bowel, rectal, problems during or shortly after, treatment?
> Should I be worried about side effects years after treatment has ended?
> What advanced technologies do you offer at this facility that can help reduce the risk of side effects?
> For (the specific form of) radiation, will I use a rectal spacer? If so, what type (SpaceOAR, Barrigel, or BioProtect)?
> Is there a chance the cancer will come back after treatment?
> What will the preparation for each treatment look like?
> What will the duration of each treatment be?
> Can you describe the entire treatment plan?
> Will there be an impact on my daily routine?
> Will I be able to continue to work?
> What activities will I still be able to do?
> What activities are not recommended during each type of treatment?
> How soon must a decision on treatment be reached?
> Is there anything that I didn’t ask that I should know?

Hope that helps!
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This helps immensely - thank you for finding time to give me list of questions < 3 .

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PS: I now see that autocorrect changed CRIBRIFORM to CRUCIFORM - too late to edit, so I apologize *sigh

On the other hand they might as well be named "cruciform" since their presence implies probable future complications.

If anybody knows how one can edit post after designated time, please let me know .

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The link below (which I think you have read) raises some specific questions regarding IDC patients who received RT prior to RP so the impact of the RT on IDC cells compared to adjacent adenocarcinoma cells could be evaluated. I would want to understand the RO'S thoughts on this for both a primary and salvage form of treatment with the various forms of RT available.

As far as ablation therapy, there have been many comments about partial and whole gland Tulsa Pro treatment. If I were starting over, I would certainly ask about its possibility as it leaves the surgical and RT treatments on the table. IF, as the study linked below suggests, RT isn't all that helpful in cases of IDC, perhaps treating with Tulsa first would at least kick the can down the road for surgery, RT and ADT. Perhaps Tulsa is used in conjunction with ADT (as is sometimes done with RT) either before or after treatment to enhance the efficacy and, again might postpone or eliminate the need for RP and RT.
https://www.sciencedirect.com/science/article/pii/S0893395222002629#:~:text=Herein%2C%20we%20analyzed%20radiorecurrent%20cases,relative%20to%20the%20pretreatment%20state.
Hoping for a positive and productive meeting for you two!!
Bill

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Thank you Bill so much for writing , I was hoping that you will help me. Those are all great points and great ideas for tomorrow discussion !

When surgeon suggested that we talk to a specialist for localized treatment we decided to contact Stanford U. because they have TULSA. They looked into our case and told us that unfortunately the lesion is toward an outer area of the gland and in that case TULSA is not very effective. TULSA has the best results when cancer is located close to urethra since probe is placed inside urethra. They also told us that we could be good candidate for different localized treatment which we will explore, but I personally do not see how those other options beside TULSA could have any good result in our particular case. They all think that because there is one single core with crazy pathology that localized treatment is an option. BUT, I am so scared of IDC and cribriform 🙁 and their weird resistance. TULSA sounded possibly attractive since destruction in that case is physical, literary "cooking" the tissue and not using radiation.

However I turn it over and over in my head and whatever I read, it seems that when IDC and cribriform are present, the best way is to take the whole gland out and keep the radiation as an "ace"up the sleeve for secondary treatment if needed. But since we were advised to have consultations and hear about all of the available options, we are doing it. Surgeon is not available for RP procedure till the end of summer so we have time to explore suggested options (although I do not see how we have them when they are sub optimal in our case). We also think that it is good opportunity to make acquaintance with radiologist since we might need him in the future (god forbid).

I just want to be really ready for tomorrow with good list of questions and make sure that we stay on topic since last consultation was really dilettante on our part *cringe .

Also, thank you very much for the excellent link you sent me ! It just confirms our belief that RP is the best way forward, actually the only way forward in our case.

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@surftohealth88
First know that a surgeon advising you to see a R/O is very very good. Most urologist surgeons who are surgeons usually promote surgery (RP). Your surgeon wanting to make sure you get consultation on radiation treatments is like I said confirming you have a very professional and patient first attitude.

You did not mention your Gleason Score, or any other tests you have had and that would help us provide questions.

You mentioned they stated no rush. That is because most prostate cancers are slow growing. There are some high risk ones and that is why I asked about Gleason Score. By mentioning no rush would most likely indicate not spreading outside prostate and not high risk but really have no idea. However as you can see we just don't have too much information to really help you with guidance.

Asked your R/O about all the options available for radiation treatments. Ask about the pros and cons of each. You did not mention if your surgeon is recommending hormone treatments. If R/O mentioned it make sure you go over all the side effects of them. You also need to discuss the low dose and high dose options of radiation.
The side effects of radiation for some are minor and for some very annoying and difficult. It really comes down to the individual.

RP is a major surgery with many side effects. Radiation does not have the same degree of side effects. Thus, your surgeon wanting you to meet with R/O first is again really good. You did not mention your age. And again, what your Gleason score was and any signs of cancer outside prostate (did you have a PSMA).

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@surftohealth88

Thank you Bill so much for writing , I was hoping that you will help me. Those are all great points and great ideas for tomorrow discussion !

When surgeon suggested that we talk to a specialist for localized treatment we decided to contact Stanford U. because they have TULSA. They looked into our case and told us that unfortunately the lesion is toward an outer area of the gland and in that case TULSA is not very effective. TULSA has the best results when cancer is located close to urethra since probe is placed inside urethra. They also told us that we could be good candidate for different localized treatment which we will explore, but I personally do not see how those other options beside TULSA could have any good result in our particular case. They all think that because there is one single core with crazy pathology that localized treatment is an option. BUT, I am so scared of IDC and cribriform 🙁 and their weird resistance. TULSA sounded possibly attractive since destruction in that case is physical, literary "cooking" the tissue and not using radiation.

However I turn it over and over in my head and whatever I read, it seems that when IDC and cribriform are present, the best way is to take the whole gland out and keep the radiation as an "ace"up the sleeve for secondary treatment if needed. But since we were advised to have consultations and hear about all of the available options, we are doing it. Surgeon is not available for RP procedure till the end of summer so we have time to explore suggested options (although I do not see how we have them when they are sub optimal in our case). We also think that it is good opportunity to make acquaintance with radiologist since we might need him in the future (god forbid).

I just want to be really ready for tomorrow with good list of questions and make sure that we stay on topic since last consultation was really dilettante on our part *cringe .

Also, thank you very much for the excellent link you sent me ! It just confirms our belief that RP is the best way forward, actually the only way forward in our case.

Jump to this post

Your age may also be a factor in your surgeon's recommendations that you also consult a radiation oncologist. The other thought is that they advising a slower, deliberative process before deciding on a treatment decision rather than rushing toward RP and that too is good advice regardless of what you ultimately decide.

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Mack Roach MD USSF Radiation oncologist dis comment on a PCRI.org video that it is a myth that radiation first precludes surgery later. Elsewhere it has been shown that High Risk non metastatic PC may be treated with
External beam radiation,

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We have app. in 2 hours, I will let you know if anything interesting transpires regarding future treatment .

JC - there was only one core of 14 with finding of 4+3 (gleason 7), and two with 3+3 . All of the rest was clear. BUT, that 4+3 contains cribriform and IDC formations. My husband is 69 and very fit and healthy.

First pathology stated IDC, and second opinion stated "possible IDC", both agreed about cribriform. Nevertheless, that one core puts my husband in "intermediate high risk" group.

PSMA showed cancer being contained in the gland and in that one single spot in prostate.

One lymph node was inconclusive but the scan was examined again by extremely experienced radiologist who told us that it is actually negative, and it was also confirmed by surgeon. So, hopefully it is negative.

All in all, unusual case with having one single core with such aggressive features :(. If it was 4+3 without cribriform and IDC decision would be more straightforward and easier. Cribriform cells tend to escape and metastasize and IDC sometimes make micro environment which almost protects cancerous cells inside those ducts. Nobody proved it yet but some studies show that most relapses after initial radiation actually happen to patients with those features and in this paper that was posted by Dailyeffort it looks like some patients that were without IDC and Cribriform before RT end up having them after failed RT. In another study IDC patients had better success with RP than RT for metastases free survival.

All in all, IMHO RP would give the best chance for elimination of aggressive features that are present at this time. What future holds only heavens know ...

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@surftohealth88

Thank you Bill so much for writing , I was hoping that you will help me. Those are all great points and great ideas for tomorrow discussion !

When surgeon suggested that we talk to a specialist for localized treatment we decided to contact Stanford U. because they have TULSA. They looked into our case and told us that unfortunately the lesion is toward an outer area of the gland and in that case TULSA is not very effective. TULSA has the best results when cancer is located close to urethra since probe is placed inside urethra. They also told us that we could be good candidate for different localized treatment which we will explore, but I personally do not see how those other options beside TULSA could have any good result in our particular case. They all think that because there is one single core with crazy pathology that localized treatment is an option. BUT, I am so scared of IDC and cribriform 🙁 and their weird resistance. TULSA sounded possibly attractive since destruction in that case is physical, literary "cooking" the tissue and not using radiation.

However I turn it over and over in my head and whatever I read, it seems that when IDC and cribriform are present, the best way is to take the whole gland out and keep the radiation as an "ace"up the sleeve for secondary treatment if needed. But since we were advised to have consultations and hear about all of the available options, we are doing it. Surgeon is not available for RP procedure till the end of summer so we have time to explore suggested options (although I do not see how we have them when they are sub optimal in our case). We also think that it is good opportunity to make acquaintance with radiologist since we might need him in the future (god forbid).

I just want to be really ready for tomorrow with good list of questions and make sure that we stay on topic since last consultation was really dilettante on our part *cringe .

Also, thank you very much for the excellent link you sent me ! It just confirms our belief that RP is the best way forward, actually the only way forward in our case.

Jump to this post

"However I turn it over and over in my head and whatever I read, it seems that when IDC and cribriform are present, the best way is to take the whole gland out and keep the radiation as an "ace"up the sleeve for secondary treatment if needed. "
If TULSA were ruled out, then RP would be my choice to allow for pathological examination for somatic alterations which would open the door for immunotherapy for a second option given that RT might not be as effective as desired. The following is from this link: https://www.mdpi.com/1422-0067/22/23/13125#:~:text=Abstract,prevalence%20of%20germline%20BRCA2%20mutations.

"The vast majority of IDC-P tumors result from adjacent high-grade invasive cancer via the retrograde spreading of tumor cells into normal prostatic ducts or acini. A subset of IDC-P tumors is rarely derived from the de novo intraductal proliferation of premalignant cells. The presence of IDC-P in biopsy or surgical specimens is significantly associated with aggressive pathologic features, such as high Gleason grade, large tumor volume, and advanced tumor stage, and with poor clinical courses, including earlier biochemical recurrence, distant metastasis, and worse survival outcomes. These architectural and behavioral features of IDC-P may be driven by specific molecular properties. Notably, IDC-P possesses distinct genomic profiles, including higher rates of TMPRSS2–ERG gene fusions and PTEN loss, increased percentage of genomic instability, and higher prevalence of germline BRCA2 mutations. Considering that IDC-P tumors are usually resistant to conventional therapies for prostate cancer, further studies should be performed to develop optimal therapeutic strategies based on distinct genomic features, such as treatment with immune checkpoint blockades or poly (adenosine diphosphate–ribose) polymerase inhibitors for patients harboring increased genomic instability or BRCA2 mutations, as well as genetic counseling with genetic testing. Patient-derived xenografts and tumor organoid models can be the promising in vitro platforms for investigating the molecular features of IDC-P tumor.

Bill

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