I’m hoping someone could offer some insight or even their own thoughts into my dad’s latest dilemma as I think it’s possibly a rare situation. You all have been so helpful in previous posts, thank you so much! I couldn’t do this alongside my dad without this forum. I can’t find much info on my question in my research. My dad is 64, stage IV NSCLC adeno, low volume tumors, dx 2/28/18, started clinical trial of Carbo/alimta/Pirfenidone pills 3/30/18 for 4 cycles, 2 Alimta maintenance so far and 3rd next Friday with scans. He has 4 areas of cancer right now. One tumor in his right lung pressing some on the bronchus, right atrium of the heart causing mild SVC syndrome. Recently developed a 5” blood clot outside the heart and is on lovenox and it is working fairly well so far for the clot. He has a very small portion of his right 4th rib showing cancer on PET scan but it’s minor and small tumor in each adrenal. Chemo has not shrunk his cancer but HAS kept him stable since day 1 so far
My dad’s oncologist isn’t big on radiation or sees a need in it. At my encouragement, I had dad see a radiation oncologist independent of Moffitt, locally here. This radiation oncologist is fantastic and my dad has come to trust him. The radiation oncologist has reached out to his oncologist to discuss my dad’s case but his oncologist will not return his call, stating he does not need to talk to the radiation oncologist. This is leaving my dad to make the decision himself. So here’s the dilemma -
The radiation oncologist has said he doesn’t feel my dad absolutely needs radiation right now for he SVC syndrome, however if he does radiation he would like to radiate ALL tumor sites on my dad. This would be IMRT to the one tumor in his lung between heart and bronchus, and SBRT to the small area right 4th rib, and SBRT to both small adrenal tumors. I realize this is rare (at least I can’t find much on it) to have a radiation oncologist willing to hit all known tumor sites for stage IV. He did say it’s a gamble, one that could work in my dad’s favor or not. There’s also the risk of radiation side effects which he believes esophagitis and possible scarring is the most extreme possibilities. This would take my dad out of the clinical trial - essentially he would stay on Alimta maintenance but have to stop the Pirfenidone pills, which we don’t know if that’s helping as his cancer is just holding stable and Alimta is good for doing that anyways. It would also eliminate any future biopsy sites for mutation tests in future as his left adrenal is the target lesion. We are getting no help from his oncologist except to say radiation will not extend anyone’s life. I disagree with that as I have seen it many times on here where radiation has helped stage IV. My dad is torn and I’m trying to help give him enough information so he can decide what he should do. Stay on chemo and stable or stay on chemo and radiate all 4 tumor sites and gamble that it just may work in his favor for NED in the long run and come off Pirfenidone in clinical trial. Any help would be most appreciated!!!
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Lisam81
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I am not a doctor and this is NOT medical advice. But if this was my decision, I would avoid the radiation at this point. His oncologist is most likely correct about the benefit vs risk not being worth considering. While radiation CAN have minimal side effects, depending on where and how it is administered, the description you gave about tumor locations leads me to think that your father will end up quite ill as a result of this. I've had radiation once, specifically for a metastasis pressing against my sciatic nerve. It was super painful. It had to be treated. Radiation was the only way to do it and it worked really well, but I did get sick and I lost about 25 - 30 pounds (and I was not overweight, so this was a big problem from which I am still trying to recover six months later, but many factors play into that).
Here is something to mull over: the effect of radiation will not change if it happens now or in six months, as long as the tumors are holding steady in the clinical trial. But it is a FACT that you do not know whether other metastasis are likely to form, and radiation will do NOTHING to prevent that. You cannot be cured of Stage IV disease by radiation, and being NED at this point is misleading. In fact, in MY OPINION, you want to keep the primary tumor intact so that you actually have something to monitor via CT scans. This shows the baseline of your progress. Without it, you have no idea whether anything is working.
My feeling is that clinical trials are worthwhile staying in for multiple reasons and sometimes they even get the patient better, more personal care. That is, of course, if they work and are not causing more harm. I'm in one now and, frankly, I had to consider pulling out due to side effects, but I am glad I am in it and I am going to tough it out as long as possible.
If your dad has good insurance and wants to stay on just Alimta, that could work for a while. I was on it for 40 rounds. But it will eventually stop working, just like other chemo drugs -- the longest I have heard of a patient being on it is seven years, but that was just one patient. I had expected perhaps 80 rounds, but only got half way there. The thing is, whether it is 20 rounds or 100 rounds, as long as it is keeping things stable, it is stretching the amount of time before the next treatment has to be considered. New targeted drugs and better immunotherapies are coming out with some frequency, but the longer you have to wait for them, the more options there will be. Radiating everything pretty much eliminates that choice, because you would not be able to effectively biopsy anything to find the best genetic matches for a new drug.
Let me repeat that: you would not be able to effectively biopsy anything to find the best genetic matches for a new drug.
I am on my clinical trial now because of a mutation that was not treatable when I was diagnosed. Now it is. Two drugs that are often effective targeting it did not work for me at all, but this trial has knocked the primary tumor down to a tiny fraction of its original size and eliminated most of the metastasis, and it did so in 8 weeks. But I had to get a fresh biopsy to be approved for this drug, and that required an active tumor.
Again, I am not a doctor. I have no medical training. But I have been a Stage IV adenocarcinoma patient since 2014 and I have been through, now, 4 different chemical treatments and that one tangential bit of radiation. If you think my experiences might be useful for your father, you can check out my blog at justbadforyou.com/blog and see why and how I formed a lot of my opinions.
Regardless if his ultimate decisions, I hope you keep us informed here on his progress. Wish him well. These are hard choices and we always hope for the best.
Thank you so much for taking the time to respond and help!!! Everything you wrote is exactly my concerns. The one thing is because of the SVC he will more than likely have radiation guaranteed to at least that tumor. It’s just a matter of when as right now it’s stable and not an immediate threat to collapsing his heart ventricle but at some point I believe that one will be unavoidable for radiation. If radiation took care of the 4 areas and my dad did well then the best possible outcome is his cancer doesn’t show up anywhere else and his tumors are dead and/or gone. I am definitely going to spend time reading your blog and pass on all info to my dad, so I cannot thank you enough for your help and advice! It will help him make an informed decision! All my best to you!
A doctor who refuses to discuss possible life prolonging or pain relieving treatments is not acting in your dad’s best interest. A doctor who is confident in his judgements should welcome a second opinion and talk to the radiologist who your dad has consulted.
Consider getting a third opinion. There is an MD Anderson facility on the other side of FL. If your dad can handle the trip it would be worth getting a consult there.
You are not required to keep the doctor you were assigned at Moffit. Consider switching to a different doctor in the practice or firing them and going to a different practice.
With regards to radiation, it works because it destroys the rna/dna of the cancer and prevents it from replicating. For many it works more effectively than chemo alone. My only concern there would be the IMRT on the lung lesion. Especially with the Superior Vena Cava complication. How large is that lesion? I ask because you might want to get a third opinion from a facility that does proton radiotherapy as it is just as effective as IMRT but the rays drop off immediately after hitting the pinpointed spot reducing the probability of damage to surrounding tissue (heart).
More thought: any radiation near the heart should be stereotactic body radiation or proton therapy. Also, I’m not a doctor, if this was my body that’s what I expect I would explore.
Denzie, thank you! I was hoping to hear from you as well as I thought I remembered radiation and chemo helped you become NED?
Yes, I absolutely agree. He’s a good doctor who is highly educated in immunotherapy and research but the care isn’t as personal as my dad would like and refusing to return the radiation oncologists phone calls is concerning to us as well. I got my dad a second opinion back in March at Baptist MD Anderson in Jacksonville with several doctors at once there. When we discussed making it a goal to try to treat to 5+ years out (not that it would happen but just with that goal in mind as it could happen) he looked at me like I was crazy and said in front of my dad “He has less than 5 percent chance to live to 5 years. This IS fatal and he won’t live to see that. It won’t happen”. That was the end of them. The one plus is the dr at Moffitt never stole my dad’s hope but he also isn’t readily available for him either because he’s so busy (he’s the director) and he’s had some issues at Moffitt with others, including the clinical trial coordinator and the PA.
The place we went to for radiation I found for my dad because it is a proton therapy center in Orlando, I think one of only 3 in Florida. We went there with the intent for inquiring about proton therapy but was told it wasn’t the best for him. I tried to understand why and the reasoning but something about because of there is no exit point to the radiation and the others allows it to exit. For some reason he wasn’t feeling it was best for him and the next appointment I want him to clarify more on why.
The tumor in his right lung that’s causing the SVC is 4.3 cm, the right 4th rib is small, and the adrenals are approx. 1.9 and 2.4 cm if I remember correctly. I did have a bit of concern when he said IMRT. I wanted to do a bit more research and while it’s good I have found it does allow more low dose radiation to the surrounding areas. He doesn’t seem overly concerned but said the scar tissue does concern him some as while he would like to offer this to my dad as he has seen a benefit, he doesn’t want to make my dad worse. The tumor in lung is located pressing a bit on the right atrium of the heart as well as some of the bronchus.
If this was you, knowing what you know now, would this be something you would have considered for yourself? Or would you have stayed in the clinical trial since cancer is still stable? Just purely curious about your personal opinion and nothing more but I do know everyone is different. I keep asking myself what I would do if this was me and I go back and forth. The best I can do is give him the good, bad and ugly of each decision and let him decide what he feels best about.
I wonder why they would say that about proton radiation. It’s just as effective as IMRT. The difference being that they concentrate their intensity in the lesion and then falls off immediately. With standard IMRT the X-rays continue on through the body (somewhat reduced after hitting the lesion) and cause damage and scarring. In the case of SVC the scarring could potentially be on the heart.
This may all be something for later down the line. If his treatment is controlling the cancer and not permitting progression you may want to stick with it and keep the radiation on the back burner.
Radiation of all types have side effects, you might want to make that thought a priority in the decision making process.
4.3 cm may be too large to treat with stereotactic body radiation.
Thank you, Denzie! I am going to investigate further into why no proton therapy. I also thought this would be the best so close to his heart and I don’t fully understand the reasoning behind it. I know that once his cancer progresses, if and when, this course of treatment of radiating all known tumor locations for low volume tumors will be null and void. So I know this needs to be decided while it’s still low volume and his cancer is being held stable.
I know some people go through radiation with fatigue and minor issues but otherwise do well and some who don’t so the hard part is not knowing how my dad will react to the radiation or handle it. I also feel that radiation can be a very powerful and important treatment towards possibly making my dad NED. It’s that possibility of what if he does and what if he doesn’t that is causing him tremendous stress. He doesn’t want to miss an opportunity that could make a huge difference in his life but it’s such a huge gamble either way and no way to tell.
The risk of radiation may be life-saving for him or could hurt him further. I just know that this is a rare opportunity this radiation oncologist is giving him and it’s not common practice for stage IV. We can’t help but wonder if it’s worth the risk..
Thank you for that info. I need to file that away. Cyberknife uses highly focused X-rays. I still don’t understand why they claim proton radiotherapy isn’t acceptable.
When and if you have time could you please take a look at my latest post to GMC1 two posts below with latest update today on my dad’s scans? Interested to also hear what you think now in regards to radiation based on latest scan info. Thank you!!
Nor do I. I always recommend it. Perhaps if they confir with Jax. Proton center they will get a better picture. We have been so well cared for in the 5 years since treatment there.
I definitely agree with Denzie. Chemo did nothing for my husband. He had SBRT on the one adrenal, zap it was gone. He has had 2 Steriotactics on his brain and they were gone. He had Proton Therapy left lung, but mass was small and behind his heart. That was in 2013.
It has just enlarged, tried chemo and no change. He is on Opdivo now and doing well. Fingers crossed.
I think some people do well with chemo and others do well with radiation. Do not understand why a medical oncologist wouldn't talk to a radiation oncologist. Does not sound very ethical. Go for 3rd opinion. My husband had Proton Therapy in Jacksonville by Dr. Bradford Hoppy. Can't say enough good things about him and the facility. I heard they were putting a Proton center in Orlando. If other areas can be treated easily and quickly with radiation, why not! We had looked into Cyberknife but mass is too large now.
Thank you so much for the info! My dad had Alimta maintenance today as well as his scans (been on Alimta maintenance since 6/29/18). As of the scan today he has NO new cancer sites still, however his cancer has increased 19 percent. The chest tumor went from 4.2 to 4.9 cm and both adrenals enlarged slightly. Now his oncologist is in agreement with the radiation (palliative only he said) to the chest tumor to pull it off the SVC and bronchus but isn’t convinced enough to change his treatment and pull him off chemo yet. Since the cancer isn’t spreading anywhere else yet, but the 3 tumors he has had since day 1 are starting to slowly enlarge makes me wonder if he is one of those who would benefit from radiating all 4 areas? The small part of the rib lesion is stable and unchanged. He is going to the proton therapy center in Orlando but that radiation oncologist recommended IMRT to chest tumor and not proton therapy, for which I’m unclear on why. Oncologist keeps saying palliative, radiation oncologist is willing to do all 4 if my dad wants it but isn’t sure if it would help him as he said it’s a gamble. As for now, no new cancer lesions but appears chemo is starting to slowly fail and allow the 3 to slowly get larger.
When the secondary spot appeared in the adrenal, I felt immediately it needed to be zapped by Steriotactics. The area was small but took a week.
I would listen to Oncologist at Proton center. I am not sure why the IMRT, except I think that treatment is faster. I am not sure what IMRT is, but wonder if it is like Steriotactics or Cyberknife. Couldn't they do Steriotactics (SBRT) on all of the other spots? I do not know the side effects of (SBRT) but my husband had none. I admire you tenacity and willingness to fight for your dad's recovery. I have been fighting for 5 years and will continue to do so.
Thank you for the name of your husband’s radiation oncologist in Jacksonville. I am going to talk to my dad about driving to Jacksonville and getting a second opinion from the doctor you mentioned. If nothing else, it will confirm the opinion in Orlando or confirm the oncologists opinion at Moffitt. He had said IMRT to chest tumor and SBRT to small rib portion and both adrenals. I still question why not proton since this is a proton therapy center. I really think he needs another opinion to help him decide what to do. My mom has shingles from all the stress and I’m an only child so it’s up to me now to help him as I have been doing since day 1. I won’t give up! My prayers go out to you and your husband. I can only hope that I am able to still fight for my dad 5 years from now, so I believe all the fighting you’re doing for your husband has been fully worth it and has gotten him to where he is today!! Fighting is all we can do for those we love because giving up is NOT an option! 💗
I gave you the name of the doctor at the Proton center in Jacksonville, but now in the wee hours of the morning, I am not sure I spelled it right. It might have an "e" at the end and I said a "y". I have a lot going on these days.
The main reason I am writing is to tell you while my husband was telling the radiologist yesterday that this his 5 th year of survival, he mention the name of his Proton doc in Jacksonville and the doctor said that was a well known and respected name in radiology. Apparently his dad taught radiology at one time and might still be teaching and perhaps has even achieved more important things in the field. I was impressed and grateful to have found young Dr. Hoppe.
Thank you so very much!! I have definitely told my dad about this doctor and he wants an opinion from him once he gets the radiation to his chest tumor, since it is an immediate issue now with the SVC syndrome and cannot wait. I wrote the name down for him and he has it. In probably a month when he’s done with the chest tumor we’re going to try to get a second opinion from Dr. Hoppe! I apologize as well if I missed any posts. I am being pulling in so many different directions and I’m trying to keep up. Thank you so much again!! You have been an immense help to us. Prayers to you and your husband!
I understand why you’re so conflicted. Was it the proton radiologist who recommended IMRT or thaw radiologist at his regular hospital. I do know that if a facility doesn’t have a treatment mode available through them they are not going to recommend something they can’t offer.
If this was my dad I would urge him to have the proton therapy near the heart then see how he recovers before deciding what to do about the others. If one of the other 3 lesions is accessible for biopsy I would ask for a new one to learn where the cancer mutated itself to get around the Chemo.
Thank you! Yes, it is the Orlando proton therapy center who is recommending IMRT to the chest tumor and my gut keeps going back to proton therapy instead since it is right on the SVC of the heart and bronchus. In fact, as of Friday they are trying to approve it through insurance to start the mapping but I feel kinda frantic in the back of my mind on this wondering if they should stop approving immediately and try to approve proton therapy instead due to the extreme proximity to the heart etc. I do not understand enough about IMRT to know why he would say that over proton for that particular tumor. I’m assuming you agree that proton therapy that close to the heart and bronchus is much preferred over IMRT there? Oncologist said radiation to chest palliative only 2-3 weeks radiation. I’m trying to figure out why palliative only to the tumor near heart instead of full blown trying to get rid of it there, since that tumor alone growing can collapse his heart ventricles and be fatal to my dad long before the cancer would be fatal. He already has tons of veins popping out of his chest from the heart rerouting to other places due to the tumor on the heart. Why palliative radiation there instead of trying to get that one gone or shrunk as much as possible?
Okay, so proceed with radiation to chest and leave the adrenals alone for now and open to biopsy to find out why they are slowly growing? It has not spread yet but there has been an increase in size since stopping the Carbo and going on Alimta maintenance. The growth by the heart concerns me because it can and will eventually collapse his heart ventricle. Thank you!!
One other thing - I am considering urging my dad to seriously consider doing proton therapy on the chest tumor AND the small portion of the right 4th rib bone and LEAVE the 2 adrenals alone for now and open for biopsy. He recommended SBRT for the small portion of rib bone, so maybe that’s better for the rib? It makes sense to me to hit the rib bone and the chest tumor though. Do 2 out of 4. If the small portion of the rib bone can be easily taken care of with proton, why not get rid of the only bone spot now??
Lisa, I agree with everything that has been posted. However, I really think it is important to think about an oncologist who is so less than helpful and will not speak with others. The comment that you did only had 5% and that will not change is very concerning. I had a whopping 6% chance of living up to 5 years after liver cancer - but I have to tell you that my oncologist did everything possible to be positive and accepted and asked for help. I am now 16 years out from that prognosis!! Someone who is not open to input from others is very concerning to me. I would be getting another opinion and most likely looking for another oncologist who is willing to put in the time and energy to maximize things instead of protecting his ego and being so adamant about not having hope.
Thank you! 16 years!! That’s so very wonderful!! The oncologist who said this to my dad was from Baptist MD Anderson in Jacksonville, Florida. We left and never went back. He is going to Moffitt though this oncologist says radiation will not extend my dad’s survival time any and is a waste to do on him. He also refuses to talk to the radiation oncologist and hear him out. Even though I believe my dad fits the oligometastatic disease definition that radiation would be beneficial for. All my best!
Lisa, I hope you followed your gut and got a second/third opinion for your father. A short story as to why... I was part of a young girl's journey through lymphoma. Her parents did not quite understand just how bad her doctor - at the same National Cancer Institute I go to, really was until I started being a part of their team and went to every meeting. It finally came to the point where, if her father had not been physically blocking my access, I would have actually slapped the doctor, he was so cruel and off base. New doctor and a whole new outlook. Lyds didn't make it, and I still believe it was the first doctor's fault because he did not do his job properly. His doom and gloom attitude means he did not put his all into saving her life. There are bad apples even in the best places. We need to know that we have the right to fire them and get someone more competent and with a better outlook. My liver oncologist cared enough that he went worldwide to find a solution to my case - because he cared enough to do his job, I am here to type this!!
I hope for the best for your father - fight for him!!
Thank you for your help!! We were able to work out some kinks today with his oncologist and I think we were able to get somewhere. He is in agreement with the radiation to the chest tumor for palliative radiation only to pull it off the SVC. It appears Alimta maintenance is slowly starting to fail now as today’s scans came back that he has NO new cancer sites but the 3 tumors have enlarged slightly and the rib has stayed stable. Chest tumor went from 4.2 to 4.9 and adrenals enlarged a small amount. He is not convinced yet to pull him off chemo. This makes me wonder if my dad is one of those candidates that radiation to all tumor sites will be to his benefit since it’s not spreading yet but is slightly enlarging now on chemo.
Lisa, I am in full agreement with anrean’s post; at the very least get another opinion
, at once, from a qualified independent oncologist. As good as Moffitt usually is I am not at all comfortable with this particular oncologist’s attitude, whatsoever. Will not bore you with details, but I am a 6 year survivor of stage III A/B lung cancer. Had maximum radiation to cancer site, lobectomy of top right lung lobe, and 2+ years chemotherapy infusion. Please do this. All Best Wishes to your Dad, and to you.
Thank you! 6 years!! So much hope from you all! That’s wonderful! What kind of radiation did you have? I know the radiation oncologist wants to do IMRT to his lung tumor right next to his heart and bronchus but I can’t help but feel it should be proton therapy (it’s a proton therapy center he went to but he said no on it for my dad). Chemo is wearing on my dad and he’s tired, SOB etc. I’m also afraid what adding radiation might do to him. The radiation oncologist thinks he can handle it to all 4 areas but said he also doesn’t want to make my dad worse. This is so stressful on my dad not knowing the right decision to make. It’s terrible when you’re faced with 2 different opinions and treatments and knowing one may be the life-saving decision or the worst possible decision. All my best to you!!
Hi Lisa, sorry for late reply as I just now saw your question. I had focused, targeted radiation daily for I believe 4 or 5 weeks. They put a very small mark on your lower body, one on your upper body and one on your chest ( in my case , for the lung cancer )where they direct the radiation. The marks on the upper and lower body are not really legible to the naked eye, but they ensure your body is placed exactly the same for each session . We are all different, but I found radiation much less burdensome than the chemotherapy. Please keep us all posted as you move forward. All Best Wishes, judg69
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