I usually check everything we do. I've grown a little weary/tired and feel I need to step up again as far as vigilance.
My husband is having spot radiation in 3 places. They are all in the pelvic area. Two are very close to each other on the pelvic crest. The other is closer to his lower sacral bone.
The day he got the tattoos I didn't think to check. We have chosen not to do radiation close to organs.. We did an L4 2 years ago and that worked great. We chose not to do upper thoracic because of lung and heart involvement. It wasn't necessary so we didn't do it. He's been okay.
Now that I looked where they put the tattoos for this radiation I see one is less than an inch below his sternum ..
Even if a ray is aimed from the sternum through the interior to get to his pelvic area, it would then involve stomach and intestines to get to the pelvic bone.
This is so hard because docs are so busy these days and really don't say too much ... they seem under more stress than even a couple of years ago in larger institutions.
I don't want to be shy. We struggle with being people who ask a lot of questions. We've survived a stage iv for 12 years now.. something that has surprised our docs.
We feel that our involvement could be a possible factor in this.
What would you all do. I don't want to anger anyone. It's intimidating for me. We need these docs.. they are good and we like them, but we are partners in our decisions and weigh risk reward.
I wrote to the radiologist today but he's not the person who maps this. We may have to put it off one day to alleviate or even change our minds as to not doing all three spots. Has anyone had experience with questions and concerns so soon to a procedure. It'll be light spot radiation for 10 days. There will be some spatter effect which I don't mind as much in the pelvic area.
I didn't even think to ask at the time of the mapping. Going into the future I have to stay more aware..
any thoughts would be greatly appreciated...
thanks
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I don't understand. Are you saying that the beam aimed at one of the 3 spots on his pelvis goes through his sternum? I share your trepidation about radiation hitting the esophagus, stomach, intestines, heart, or lungs. The radiation oncologist should have put together a set of dose constraints for all of those organs at risk. The treatment plan includes a "dose volume histogram" that shows if those constraints are met. Ask your RO to explain it to you, and ask which constraints were not met. He will probably be happy to do so - this is what he does, and he will be happy that you are showing an interest.
Thank you for adding that the RO will be happy that I am showing interest.
We are scheduled for spot radiation in 3 places in my husband's pelvic area.
two are on the crest I believe is the illium.. right next to each other. They were well seen, since we had a biopsy taken to get material for immunology and other information.
The third area is very close to the tail bone..so all are in the pelvic area.
I did take my own photos when we talked to the Intervention Radiologist. We do have disk copies, though thought on my phone I can pull these up easily.
As I said, I just didn't think to look at the tattooed areas. When I looked today one tattoo is very close to the sternum. There are two others on each hip which is fine. Then there's some markings around his abdomen.
First, I need to make sure there are no errors in patients scans.. which I doubt. Then the next question is why the dot up that high at the sternum? So, I basically called a stop at least for Monday until we get very clear about that dot at the sternum. Without knowing anything really about radiation, I thought well maybe to get to that ilium crest they might go in diagonally?? That would mean too much soft tissue and organs involved, so I doubt that. He never mentioned much involvement except there is some scatter.
I was wondering if it's just a positioning tattoo... but that doesn't make sense either.
When you say dose volume histogram, RO said low dose 10 treatments this time with no steroids because he did so well with the L4 over 2 years ago.
Is there something I can read to understand 'that shows if those constraints are met'... and which ones aren't?
I googled and read a little but nothing that gave me any real information.
We like him a lot. I do trust him. I also know that mistakes can happen and this is why I'm stopping until we get clarification. I truthfully felt a little intimidated- yet of course, my husband's well being is needed. Thank you for responding.
I have no idea why they tattooed near his sternum. The tattoos are used for the rough bench positioning at the start of each treatment. Maybe they want to avoid curvature of his spine and pelvis when positioning him?
Just ask the RO to go over the dose constraints to organs at risk and to show you the dose volume histogram of the treatment plan. There's nothing you really can know in advance - it's individual to everyone's treatment. He will be happy to explain all of it.
Thanks I will.. I knew I could come here and at least get some direction. This site is invaluable for all of us.
It can be a lonely trip...
I often think we need doctor friends, paralegal friends... real estate friends..
We have cherry picked everything we've done. It has worked for us.. 12 years with very good quality of life... a lot of hard work... and a lot of help from these forums..
The sternum tattoo only tells the radiation machine the center line of his body. I had 30 radiations on my hip bone after I had had three flecks of gold put into my prostate area. The radiation machine was able to very accurately radiate my hip bones using the tattoo and the gold flecks. That was 6 1/2 years ago now and I no longer have prostate cancer. Radiation does not bend. It goes in a straight line all the way through your body. That is why they give you 3 radiations at each treatment and hit a spot from different angles. Only the cells that are hit many times die off and the ones next to them do not. The 3 gold flecks are in him for life and are in three dimensional positions and extremely accurate. In fact the prostate gland is not attached to any bone structure. When poop goes into your large intestine it can move your prostate gland. If this happens during radiation the beam may not hit the right cells. HOWEVER, the three gold flecks will also move and the radiation machine can follow the prostate as it moves, or shuts off if needed.
There is no spatter effect. Radiation beams go through muscle and bone easily. For example when you get an x-ray of your teeth does the picture have "spatter effects"? No it does not. Bone does not spatter radiation. It goes straight through your body. So when I got 42 radiations there were 126 beams total. I had 5 appointments every week. Then I got 30 more which was 90 more beams. I am 73 years old and had no side effects from the radiation. My oncologist told me that cancerous prostate cells can not multiply without testosterone (androgens) in your body. They may attach to the bones where they sink into the bone and are stuck there. They weaken the bone over time and I was given Xgeva shots (an osteoporosis drug). For pain in my hips I asked my doctor and used Tylenol generic 600mg timed release arthritic strength tabs for the drug store. They last 8 hours and let me get a full night's sleep. Many "side effects" of PCa have nothing to do with PCa, but due to other problems or diseases your husband has. So write down what is wrong and check it all out with his oncologist and other doctors. For example my hemoglobin levels were low and it was because my kidneys were in bad shape, not from radiation or ADT. Low energy was from Vit B12 deficiency. His blood tests will tell you what's wrong. Above everything else these doctors are on your side and trying to help him, not hurt him, so just keep truckin'.
Dear Jim, It is beautiful that you do not have PCa.
I would like to ask questions about your post. This is how I learn since I'm not great at reading highly sophisticated medical reports.
First I would like to ask. That tattoo at the sternum you say was used for positioning you properly. Also, your radiation occurred in the pelvic region.
Did they go through your body from 3 different angles. I do know they go in from each side. This is a question I have to ask. Is that sternum marker only for position of you or positioning of the beam. I do think the radiologist would have said since it would mean a lot of tissue and organs would be involved. My RO is well experienced.
The other mention I want to make is the RO and other docs are talking about a spatter effect. They said there is always spatter, but much better at it than it used to be, in fact, so much less dangerous. Also, since the bones are alive and filled with blood I was also told there is a certain amount of radiation that does go through the body.
We aren't concerned about this. We decided radiation is the right course regardless.
I'm also glad you spoke about the B12. He was deficient FYI, within one week his energy picked up. So the B12 was a good thing.
I appreciate your words and compassion. Our docs are our allies though they are being pushed so hard these days, I do notice the pressure they are under.
In the end here, I will ask tomorrow and find out more about the mapping since the last time I spoke to our RO the mapping wasn't done yet. Thanks...
Alright let me explain it better. When he lies down on the table to get radiation they want to be sure he is aligned with the radiation machine. They project a center line line on his body with light. If he is aligned properly the line will go through the tattoo. If not, then the table moves either left or right (the technicians do this from another room). No one else can be in the radiation room except him. Once he is aligned he does not move for 7 minutes. The machine moves around him and zaps him three times: left side, from above his hip, and right side. Then he gets up, goes to the bathroom and leaves. Once a week or so he talks to the radiation doctor. So they do NOT do radiation through the tattoo. The radiation is not directed to the organs. The radiation always goes completely through the body in a straight line. It is so accurate that it can kill certain cells and not kill the cells next to it.
The B12 I used was a chewable tablet of 2000IU. Hold it under your tongue if you can, because it is absorbed sublingually (under the tongue) and digested in the stomach. When his oncologist does a CBC lab test they check for levels of Vit B12. So you can watch levels every 3 months or so. The same is true for Vitamin D3 and calcium, always ask the doctor what you should do. Above every thing else remember to ask questions and just keep truckin'.
Well, the radiation machine uses the metal flecks to determine who the patient is as a second check before the radiation begins at each treatment. Other than radiation location I do not know of any other medical use of the flecks, except they they stay there forever. I had 42 radiations in 2007 with metal flecks and then in 2011 I had 30 more radiation and they used the same flecks.
My husband is having same thing...I could have written your post! They only do 3 areas. He starts radiation next week. He has the tattoos same places. He was diagnosed end 2014. He is more worried about next month when he will be given an IV of Taxol or Radium 223. Reading your post has made me worry about the radiation, too...but am glad you got several replies to help alleviate our fears!
Hi Miriver, I'm not sure when you say they only do 3 areas. Are you saying they beam radiation in 3 areas. I was referring to 3 tumor areas of his body they are radiating. I would have preferred not so many.
Radium 223. I heard here on this forum that Radium 223 only affects the bones that have cancer. I asked our oncologist and he said Radium 223 affects all bones but will kill the cancer in the bones that have it.
I understand the worry. I'm sorry if I caused you worry. People treat their medical conditions differently. Some have their prostate removed, never to again have a problem, while others have nothing but challenges that continue. Some people do exactly what the doctor recommends and others research everything...
I'm one of those who tries to know what I'm stepping into. We've had reason to take this route.
Thanks.. and yes, so many responses.. not so alone especially people saying, yes ask!!!
Like I said, If you sit down with the RO he or she will bring up your map showing the location of the mets and how the linear accelerator will hit each met without hitting vital organs. The amount of radiation used on each pass depends on the location of the met vs vital organs like the spine , heart, etc. As you’ve heard the marks are not used to direct the radiation ; only to position you the same way each time in the table . And they are checked again every time. The marks are fixed and the laser used to site the marks are fixed , so once in alignment your body is positioned in accordance with the radiation plan so the mets are hit dead on.
Hi there, it sounds like you are being very thoughtful in your process and it sounds like you are doing all the right things. Making a decision like this is very difficult because it is a kind of « darned if you do darned if you don’t proposition ». My husband’s upper spine in the neck is now fractured and he is in a lot of pain. He is in hospital palliative care but the cancer clinic called to say that they could radiate that area for pain management but that we would have to let them know within a few hours. This would have meant fitting him with a very confining collar, transferring him to the cancer agency fitting him with a very restrictive mesh mask then the transfer back to the hospital. Very hard decision and it was a 50-50 kind of situation. In the end we decided to forego that treatment as I felt it would just be to traumatizing for him. He has been through so much for the past 6 years that I just didn’t feel like taking the gamble. I wonder if I did the right thing or not but this is what happened. I pray for you and your continued vigilance. At this point for us, it is a matter of pain management and release.
I'm in the same boat, somewhat. I'm oligometastatic and should I have the upper spine T3 targeted for SBRT and risk a compression fracture? or go for it. Tough decisions. My prayers are with you.
We go through so much. I feel when I look at things from different angles, ask questions, read, research etc.. and then make a decision.. what else could I do. I truly try not to look back. In this situation we both didn't want all 3 tumors radiated at one time.
The first spot radiation was L4 and it was a breeze. Getting off the steroids was a different story. We titrated the steroids till we got down to putting it in a 2 oz liquid and did drops that last month and even then there was an amazing lack of energy...
I so agree.. much of these things are a gamble.. and risk reward plays a big part. When you are talking about neck, maybe much more time is needed than to make a quick decision. We chose not to radiate the thoracic area and only the lumbar because of risk. We are lucky to have the choice. Thanks very much for your kindness..
seriously considering more radiation to spot mets in his torso and quite honestly I wish he wouldn't do it. The damned if you do, damned if you don't consequences are real, and he feels pretty good now so why risk unintended consequences for an unproven treatment? He sees the radiologist again this week, so we will see what he decides.
I am in the same boat, with a consult this week to consider more radiation to some pelvic lymph nodes that were already hit 6.5 years ago. The potential benefit must outweigh the potential harm to the bowels, a subject that must be discussed with my RO.
Very important question. You have every right to sit down with the RO and ask him to explain the plan he and his dosimetrist team have developed to treat your mets.
I’ve had three bouts of radiation and will have the fourth starting next week.
Bob thanks for the support. I do fight for my husband. Mainly what I do is protect him through the research I do.
I can't say I'm not a little nervous about talking to the doctor. When I ask myself why I feel it's the timing. As soon as he had his mapping I could have done this instead of a week later. I am getting an internal message to make notes once again and not take a visit for granted. To be prepared which I can't say I was. Thanks
I could have written your same post, too! I have a consult with my radiation oncologist on Wednesday to determine if the three areas in my pelvic region may be re-irradiated. Thank you for your post and for generating the discussion and questions from the discussions that I need to take with me for this most critical consultation.
I am told by the way that the illiac lymph nodes, at least some of them, are near the bowels. So this will not be without some risk, which we need to discuss with our ROs. I did well 6 years ago and I believe that additional radiation treatments can be beneficial in my situation.
Hi, I am being told radiation is improving all the time, so over 6 years ago.. they are more perfected now. This may help you to feel better about your decision.
Also, they aren't lymph nodes. There is a tumor on that bone that has already been biopsied for a couple of reasons. One that will greatly help us going into the future with immunology.
This is just a thought. I have no idea of anyone else's situation but ours. We were able to get a biopsy of the tumor area. This is covered by medicare to make sure this was a PCa tumor. So we did do this with an Integrative Radiologist. He took enough samples to not only check for positive or negative cancer, but to be able to use these samples.
I say this because you haven't done the radiation yet. The procedure was a hospital outpatient procedure. The tumors on the crest apparently were able to be reached. If this can help anyone else, I'll be happy...
I will come back after we see our RO. I believe that since mapping was done after our last visit I can clearly ask him how the team decided to use radiation. Actually one person on the team is a physicist which was interesting to me.
I SO hope this doesn't get complicated and that tomorrow we are received in a good way with our questions since the radiation was supposed to be tomorrow. We may have to delay a day.
Listen to your gut also .. although fear does follow all that we have to do.. it can be a companion, something I am tired of.
The next hurdle for me is understanding different immunology centers and now another area of medicine that is more foreign than the last. It's a plate that just IS.... and I'm grateful to be able to do this.
Thank you everyone.. and I am glad this topic is helping... here's to strong health and lots of patience...
Thanks so much for your reply. I care, so please let me how tomorrow's consult goes.
My RO consult is on Wednesday. MY RO called me today with the message that he will probably turn me down since he already irradiated the lymph nodes in question (for my case) and there is great risk to injuring the small intestine. I am bummed out about this and uncertain what I will or should do next.
I’m no doc but when I had two hot iliac nodes I had ALL pelvic nodes radiated by IMRT since two visible nodes ( by MRI) usually means invisible nodes throughout the pelvis. It was a long process due to the need to avoid surrounding organs. Fifty sessions at a total of 75 grays plus ADT3 and metformin. No recurrence three years later and no notable side effects. Dr Dattoli in Sarasota was the RO.
Amazingly, all my mets have been in different locations not treated previously , two or less in number( oligomets ) and pretty small. I credit use of new ct pet scans for catching them when small and few. And I guess luck!?
We just heard from the nurse today. The RO said that sternum tattoo is just for positioning. The RO has to sign off on everything and will do that before my husband gets the radiation. We are going to go much earlier. I need to satisfy one more thing. They are very open to questions. Thanks and wish us luck. These are 10 spot radiations ....
I would like to wish all of us who are 'dealing' with these challenges- strength, strong health... gratitude...the sharing that contains in it so much support. Thank you... I'll keep you updated.
Well, we began this today. I called Loma Linda a couple of years ago. Do you happen to know more about proton beam. Where they offer it because none of this is mentioned where we are..
Sadly...
If I had thought about it we would have looked into it.
When I called them they said they don't use the thin beam that is used with the prostate, and medicare will cover it.
I will hope this will work without side effects. I need to make some connections in case we need more. Thanks very much...
Question about proton beam. Does anyone have correct information about proton beam that it will pass through organs or tissues without damage?
Also, when I did call they were very clear their palliative radiation is different than their proton beam for the prostate gland without met involvement.
I will check and report back. I'm just wondering if anyone has a lot of information about it being safer than what say UCSF is using.
I had proton beam therapy at the National Cancer Center in Seoul, South Korea in 2013. Proton beam radiation releases all its radiation/energy within 2mm controllable by the operator. It does not affect other organs. I wrote two books on the subject which are available on Amazon. Proton beam radiation is seldom used for 'palliative' type radiation, even though some have 'pencil beam' capability.
SBRT is used to zap spots and does minimal damage to surrounding tissue.
Alan, thank you. First congratulations and kudos to you for writing two books. When I called Loma Linda they pretty much said they could use proton beam but the palliative type would be different. I didn't understand at the time, nor do I at this moment either except I believe I can get the gist of it.
The proton beam used for the prostate gland in lieu of removing it is one type of radiation. The nurse said for the tumors inside the prostate, if they were to get close enough to the rectal wall or grow larger they could radiate but it would be a wider beam??
Is this what you are referring to when you say 'pencil beam' capability.
I just looked up SBRT. We have no idea what type of radiation my husband is getting right now except he did have a similar radiation over 2 years ago. It was to L4. It relieved pain.
Though it is lighting up on a recent scan. They said they could radiate again if needed.
We aren't there at this time.
Right now he is having 3 spots on the bone in his pelvis radiated with 10 sessions, very short... minutes... he has no side effects at this time and we are 1/2 way through. We aren't even using steroids for inflammation. SBRT or IBRT is something I have to learn.
I just looked it up and I got the sense that IBRT is a stronger dose.
It's very difficult to learn each and every area of treatment in order to make good decisions, even with good doctors. We do a lot of work prior, although this particular radiation, it seems I just trusted who we had worked with before with good results.
We are also currently seeing a Chinese herbalist who comes highly recommended. We are using herbs to help keep his immune system strong and I do believe it helps keep the body from heating so much. Does this make sense? Thanks very much...
Since my last comment I found out about Vitamin D 3. Low amounts can cause tiredness. So ask the doctor about his Vit D3 levels. My Vit D storage was at a very low level, so they gave me a prescription for a very high dose once a week for 13 weeks. This will raise my Vit D3 level and give me more strength. So ask your doctor about how much Vit D3 your husband should take along with Calcium.
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