Worried about pulmonary fibrosis if radiating the metastasis in my shoulder blade

[Mascouche]

When I saw my radio-oncologist a few days ago and asked what is the risk for my lungs if we use radiation against the metastasis in my right shoulder blade. He said that there is a risk that it could cause fibrosis but that it does not impact breathing and that I should not worry.

Today I decided to do a little research and what I see is not as benign as he has made it sound.

"Pulmonary fibrosis is a lung disease that occurs when lung tissue becomes damaged and scarred. This thickened, stiff tissue makes it harder for the lungs to work properly. Pulmonary fibrosis worsens over time. Some people can stay stable for a long time, but the condition gets worse faster in others. As it gets worse, people become more and more short of breath."

In my eyes, having breathing problems feels like one of the worse way to go, kind of like drowning all the time, and I am no longer certain that I wish to have radiation to my shoulder blade anymore.

Has anyone here been treated for metastasis to the shoulder blade or to some other area that is behind the lungs? Are there other methods to deal with the met other than radiation? Surgery? Just ADT?

Could they do radiation from the top down so that the radiation does not go through the lung?

[mrscruffy]

Up and down my spine. No problems

[Mascouche in reply to mrscruffy]

Mrscruffy, I just want to make certain I understood you properly. Are you saying that they were able to radiate your spine without going through your lungs at all by putting the ray machine on top of you?

[mrscruffy in reply to Mascouche]

Machine was able to move around my torso (4 seperate mets) and administered that way. The metal bed was able to move somewhat to manipulate my spine. Previous mets were lower spine so this was a different approach. MO was worried about spinal chord during this last treatment

[tango65]

Pulmonary fibrosis is a disease which includes the whole lungs and eventually leads to honeycomb lungs.

The fibrosis caused by the radiation will be a limited fibrosis which most probable will not caused any problem with your breathing.

[Tall_Allen]

Since there is no known benefit to irradiating metastases, there is no reason to risk pulmonary fibrosis.

[God_Loves_Me in reply to Tall_Allen]

Learning questions - I know terms call recurrence, but radiate such a spot to delay the progression. Does it not call benefits when someone can delay progress using radiation?

[Tall_Allen in reply to God_Loves_Me]

What makes you think it delays progression? There is no convincing evidenc e for that. There is no convincing evidence that destroying a local metastasis delays progression.

[Mascouche in reply to Tall_Allen]

TA, you wrote "There is no convincing evidence that destroying a local metastasis delays progression.".... Is the shoulder blade not considered distant rather than local? Does that change anything or there is simply no evidence that destroying any metastasis delays progression?

[street-air in reply to Tall_Allen]

I realize you are saying there is no good studies showing a benefit. I seem to remember you also said debulking cancer in prostate in stage 4 doeant help once its out as mets spread from other mets. So why wouldnt knocking out mets reduce/slow/hinder/delay metastatic spread? hypothetically.

[Tall_Allen in reply to street-air]

Early on, prostate-to-met progression is the cause of metastases. At that stage, eliminating the cancer in the prostate (called "debulking") may delay progression. But after there are more than 3 distant metastases, debulking no longer works. We have Level 1a evidence of this:

prostatecancer.news/2018/09...

By the time that distant metastases are detectable on a bone scan/CT or even a PET scan, there are perhaps thousands of metastases in tissue reservoirs everywhere. Even the best PET scans cannot see metastases smaller than 5 mm. It is NOT like pulling weeds out of a lawn. It is like plucking morels from under an oak tree. The real plant is the mycelium that extends everywhere throughout the soil and into the roots. You do not slow down the plant by harvesting morels that pop up.

The data so far show that if there is a benefit in irradiating oligometastases, it is not very big. OTOH, we know systemic therapies (hormonal, chemo, and radiopharmaceuticals) work. That is the major treatment. While we wait for more data on oligomet treatment, my opinion is -- if safe, why not? But if safety is questionable, there is not enough data that it is worthwhile to potentially compromise the patient's health.

[God_Loves_Me in reply to Tall_Allen]

Great explanation

[Mascouche in reply to Tall_Allen]

Hi TA, the article you've provided discusses mainly the effectiveness of debulking the prostate when you have a few distant metastases.

Do you have one that delves into the effectiveness of doing radiation on the distant metastases themselves?

[Tall_Allen in reply to Mascouche]

I was replying to street-air's question about debulking.

[Tall_Allen in reply to Tall_Allen]

See this link for a discussion of the topic.

prostatecancer.news/2020/07...

As you can see, there is no proof yet that it accomplishes anything (other than pain relief, if there is pain).

[Mascouche in reply to Tall_Allen]

Much appreciated TA.

So to help my Radio-oncologist understand why that there would be only risks and no really benefit to irradiate my right-shoulder blade because it is situated in the mediastinum. And I should refer him to the HORRAD Trial to make him understand that adding radiation to Orzigovix+Xtandi would not add any statistically significant difference than just using Orzigovix+Xtandi .

Think that will do the convincing or do I need more sources?

[Tall_Allen in reply to Mascouche]

No, HORRAD was about debulking the prostate, not about MDT. The article I just linked describes all the MDT studies.

If your RO believes he can irradiatiate your scapular met safely, why not? He will run a dose/volume histogram showing the dose to your lungs. If he can't do it safely, you shouldn't do it.

[Mascouche in reply to Tall_Allen]

He has not asked me if I have asthma or recurring bronchitis (which I do) so I am lacking confidence on how safe my lungs would be from the radiation. And he could be blowing smoke up my .... as I would not know what dose, if any, is safe for my lungs. Without having had any radiation through the lungs so far (aside from scans), I already consider my lungs to be far from ideal since they are so easy to irritate.

[Tall_Allen in reply to Mascouche]

He will determine your lung dose before he gives it to you. You can ask to see the dose/volume histogram for your lungs after you get the CT planning study.

[Mascouche in reply to Tall_Allen]

I will try. When I asked his intern to see the histogram for my 38 radiation sessions with curative intent to the prostate/pelvis, she replied that they do not provide that. It was too much hassle so I did not insist further at the time but with my lungs at play, I will be more insistent when we next talk.

[Survivor86 in reply to Mascouche]

You should. It’s your life and part of your medical record. All best wishes.

[Mascouche in reply to Tall_Allen]

I had my appointment yesterday so they could do their CT scan they use to create the model from which they will decide how to radiate my shoulder blade.

The RO was not present, only technicians.

They told me that I will get a call in the next 3 weeks to let me know what the schedule will be for my radiation sessions.

I asked them whether the radio-oncologist will be there when I go for my first session. They said no, it will only be technicians there too.

I've told them that I am concerned for my lungs and that it would put my mind at ease if the RO could walk me through the dose/volume histogram to show me how he is protecting my lungs.

I was told, we can't give you that document. I said I don't want to take it home, I just want to be walked through it to get some peace of mind.

They looked at me as if I was the first person to ever make such a request. They admitted they did not know what to do and suggested that I try to get schedule an appointment with the RO.

Now I am concerned that if I manage to find a number to speak with the RO's secretary, all that will end up doing is possibly delaying the start of the radiation session. Either that or he will take this as a challenge to his know-how and he will think that I do not trust him. I wish my RO was as open as my MO as this would be so much easier.

[Tall_Allen in reply to Mascouche]

ROs are seldom asked, but are usually delighted to show it. They don't attend the actual treatment, because their entire job is completed in the planning stage. It's all computerized and automated.

[Justfor_ in reply to Mascouche]

Yes, this was one of the reasons I elected RP instead of RT as my primary treatment. There are high chances that the super-duper surgeon will do only a part of the operation and leave the rest to their assistant, but less chances they won't show up at all. As to the argument that the work of the RO is over after planning is finalized, this is high grade BS for the masses. As an engineer I have done the designs of many installations of varying scale and importance, the construction of which I have personally supervised, as the norm has it in this line of business and no serious project owner will hire a "tourist".

[HikerWife in reply to Tall_Allen]

TA, I thought I remembered reading here that irradiating bone mets is used palliatively to relieve pain - is that incorrect? Or to relieve pain when a met is impinging on a nerve? Thanks.

[Tall_Allen in reply to HikerWife]

Yes.

[ragnar2020]

Proton beam radiation can be administered to avoid going near one’s lungs

[God_Loves_Me in reply to ragnar2020]

100% Agree

[wilcoxsaw]

With proton beam therapy they can eliminate radiating your lung because the proton particles can be stopped at the tumor in the shoulder blade. I had a spot on my left 6th rib treated with protons, the lung was directly behind that rib, because the protons could be stopped at the rib there was no lung involvement and zero lung side effects.

With conventional radiation the beam will pass through the shoulder blade in your case and any anatomical structures beneath that so yes there would be a chance of damage to your lung.

[Mascouche in reply to wilcoxsaw]

Thanks for the info. When I had checked with my hospital 3 years ago, they did not have a proton beam machine. I'll inquire again to see if they have one now.

[wilcoxsaw in reply to Mascouche]

Proton centers in US :

protonbob.com/about-proton-...

[Mascouche in reply to wilcoxsaw]

Thanks for the link but I live in Canada

"As of April 2019, there were 81 operating proton beam therapy centres worldwide, 41 under construction and 20 centres in the planning phase. 2 Canada is the only G8 country without a hospital-based proton beam facility in operation or under construction."

[wilcoxsaw in reply to Mascouche]

You would have to travel and likely pay out of pocket.

[NecessarilySo]

Please read my bio. I have eliminated many metastases using heat. One was on my spine between shoulder blades. By doing this on your own using hot, hot showers, you can immediately improve your condition and reduce your fears.

[Mascouche in reply to NecessarilySo]

When I read your bio, my mind was thinking in Celsius since I am in Canada. So when I came across the section where you said "I used very hot water on my skull, during a shower, which I did not measure temperature for but now I would estimate it was in the range of 110 to 120 degrees", I was telling myself this is non-sense as your skin would peel off. That is because 120 Celsius would equate 248 F :). It made more sense once I used the intended measuring system. Anyway, thanks for the tip.

[vintage42]

I think PF from radiation is static damage whereas the disease is progressive. A friend died of IPF that got worse over 5 years.

[Mascouche]

Just as an update...

I've told my oncologist on the phone to let my radio-oncologist know that I am not willing to do the radiation to the shoulder blade just yet as I fear for my lungs because of its location. I also told him that while I am ready to try out his Orgovix + Xtandi combo, I first want another PSA test to see where my PSA is at with just Ivermectin + Hydroxychloriquine now that it will have been a few more weeks. He has scheduled the PSA test for June 5 and he is to call me with the result on June 6.

At that point I will likely take just Orgovix for a few weeks in order to see its side-effects and to later assess if the side-effects get worse once Xtandi is added to it.

And when I am next seeing my oncologist in person in late June, I will ask him to twist the radio-oncologist arm so that he agree to show me the dose/volume histogram for my lungs and reassure me on why there is no way the radiation could impact my lungs.

[PSAed]

Not an easy decision to make,I sincerely hope you get the outcome you want.