Please help re: SABR/SBRT Therapy

[Paige]

Hi all! (Sorry for the long post but wanted to present circumstances and correct information). I really need some help and info. My mom was diagnosed with Stage 4 Squamous Cell lung cancer in January.    4.5 yrs ago she had a kidney transplant that has been doing great, then this. I have been fighting nonstop doctors, insurance, facilities etc. to get her the correct and good care she needs and wants. I am sure to follow all her treatments, medications, lab results, tests etc. (A lot has been overlooked or missed). From the start it took me over a month to get approved to go to MD Anderson  from insurance and MD themselves, even with support from docs here, which ended up being a nightmare, but that’s a whole other story in itself. We finally found a good Oncologist (the one in the hospital when the cancer was found kept asking if she was sure she wanted treatment) after feeling there was no hope. The cancer was found in her right lung and in the pleural cavity, thus Stage IV. She has had 6 rounds of chemo of Carboplatin and Taxotere. In May - 2nd PET scan done at MD Anderson, we were told the results were 90% better!! Couple weeks ago had 3rd PET Scan and told Scan was very similar to previous at MD and the cancer in the pleural cavity basically looked non existent as couldn’t really see. However, mass within thorax, a right middle lobe mass has shrunk but still there and close to airways.  Size is now 26mm x 18mm although maximal SUV did increase from 4.8 to 7.9. (Have researched SUV values but don’t really understand them, if anyone can help explain). Also read SUV values are not a very precise, accurate, or definitive measurement. The doctor was not concerned with this change and not sure correct. The original plan was to continue with Taxotere as maintenance. At appt. the Dr said at “board presentation” of case currently, they actually wanted her to stop chemo altogether, f/u w/ PET scan in 3 months and “see how looks” and whether cancer has progressed or not. (Not an idea my mother or I liked). The Dr explained to us about SABR Targeted Therapy, which he really wanted to do on the mass in the r due to being so close to airways, and stating it would not affect surrounding organs. He was going to get with MD Anderson doc, discuss, see if it might be presented to his board, and possibly move forward. We asked him to please do that, but irregardless we were liking what we heard so far, wanted to do further research, and MD Anderson was not the final decision maker. I immediately began researching and found SABR mostly used in early stages but has been successful in later stages. Long story short, doc never got with MD Anderson, not sure what happened, not being told, but was told “board” is of consensus to just do Taxotere for now, do PET Scan in 3 months and keep other in background for later possibly if needed. I wanted answers and told why. I was told because so far handling chemo ok (not true as side effects awful) and they’re worried about side effects of SABR. I asked what these side effects were as based on the research I did side effects were minimal and a lot less than she has now! Never got an answer. All this transpired over the phone. Therefore, at our next appt I want to be prepared! I’m furthering my research and ANY info that can be supplied would SOOO greatly be appreciated!!!!! I would really like to hear from people that have had the treatment or their caregivers. Info on side effects and outcomes too would be great!!!! I welcome all positive and negative info. We would like as much info as possible! I’m strong willed and willing to do whatever fighting that needs to be done for my mom, as long as she wants me too! She is very interested in this from what we’ve heard thus far. She is fighting this battle of cancer and is NOT ready to give up so I do all the hard fighting she is unable to do!! My mom is 75 and has been doing great since the kidney transplant before all this. I’m worried that due to her age and of course finances ( she has Medicare) she is being brushed aside!!! Thanks in advance for anyone reading this and willing to give input! I also send well wishes to all patients fighting this HORRIBLE disease and I send good energy to all family and caregivers who are FIGHTING the system and fighting others EVERY single day for their loved ones!!!!

[BridgetO]

Hi  Paige an welcome,

I'm sorry to hear about your mom's diagnosis and the difficulties she is having getting the treatment she wants. I don't have any personal experience with SABR/SBRT, but there are are others on these forums who have an you'll probably hear from them. Has  your mom considered getting a second opinion. For an advanced cancer that I had prior to my lung cancer, I went for a seocnd opinion because I had some concerns about my treatment. The second opinion doctor recommended something addtional and my orginal doctor agreed to do it based on the second opininion. Because my insurance is connected to an HMO, I didn't have the option of going out of network for treatment. I paid for the second opinion myself, but it wasn't nearly as expensive as I had expected. Depending on your mom's insurance, she might be able to get a second opinion paid for.  Best of luck.

Bridget O

 

[Tom Galli]

Paige,

Oh my you are engaged in an unnerving battle.  Let me see if I can offer some explanation, but first hope.

I was diagnosed with the same cancer recipe as your mother.  That was nearly 15 years ago, and I've survived surgery, and surgical complications, 18 infusions of taxol and carboplatin, external beam radiation therapy (EBRT otherwise known as conventional radiation), stereotactic ablative radiotherapy/stereotactic body radiation therapy (SABR/SBRT otherwise known as a form of precision radiation), and targeted therapy (Tarceva).  It took more than 3 years of treatment to achieve no evidence of disease or NED.  If I can live, so can your mother.

MD Anderson is a very large and very good lung cancer treatment center.  Sometimes the very large overwhelms the very good and it sounds like your mother's experience is a prime example.  But, MD Anderson is a past event. I acknowledge your mother's troubling treatment experience and it appears many balls have been dropped.  But, let's put that aside for now to generate some ideas for approaching future treatment. Is the doctor you refer to as the "good Oncologist" currently treating your mother?  Is this also the doctor that is worried about "side effects of SBAR".  If so, I'd venture your mother's doctor is a medical oncologist.  Here is an approach.  Get a referral to a radiation oncologist and ask this doctor about SBAR.  I'm not saying the medical oncologist is wrong, but the radiation oncologist deals only with radiation treatment and has a much better prospective on what works and what won't. 

You are not the only one who doesn't understand SUVs or Standard Uptake Values.  I've had many PET scans and my SUVs moved around a lot!  Every PET scan during my metastatic (active cancer) phase showed a different SUV for each tumor.  I learned that less than 2.0, ignore it.  From 3 to about 6, it might be an indicator of metastatic activity. Seven was an "in between zone."  Above 8, presume it is metastatic activity.  I had one at 14.4 and my doctor was absolutely sure of active cancer.  SUV count varies between people, tests, and tumors.  It is a secondary indicator that confirms active cancer when a biopsy is inconvenient or not possible.  If I had your mom's increase from 4.8 to 7.9, I would be concerned about active cancer, not because of the increase but because of the 7.9 value alone. Try and visualize the size of your mom's tumor as a postage stamp.  It is small, not insignificant, but small.  At diagnosis, mine was the size of three postage stamps side-by-side. So you are right to conclude that SUV values are not very precise.  Moreover, small tumors attacked by chemotherapy often have increased SUVs (cancer cell death results in inflammation that inflates the SUV).

You reported that the mass in the plural cavity is gone and the right lobe mass is reduced in size (now 26 mm by 18mm).  It does appear that the 6 rounds of carboplatin and taxotere have had an effect on her tumors.  Given the size and SUV of the remaining tumor, continuing taxotere may be a good medical oncology plan.  Find a radiation oncologist to give you a radiation oncology plan.  I'm not sure that side effects are the issue concerning radiation.  Perhaps the doctor is concerned about the location of the tumor to be radiated.  Bottom line, get a radiation oncologist on the team.  Radiation can be and of is given together with chemotherapy, and it can also be given after chemotherapy or even before chemotherapy so there are lots of radiation options available.   

You've expressed concern about tumor boards.  These boards are common in large cancer center hospitals.  Some independent oncology clinics also use them.  The theory is to have very experienced cancer doctors (surgeons, oncologists, radiologists, pulmonologists, and pathologists) listen to a patient's medical case and deliberate on the best future treatment.  I was diagnosed before tumor boards became common, so I have no actual experience to provide.

You remark that your mom's chemotherapy side effects were awful as were mine.  I hope she was prescribed medication to lesson the impact.  My side effects presented in a pattern that started and stopped the same number of hours after each infusion.  I learned if I took medication ahead of the impact time, I often experience no discomfort.

I hope I've answered your concerns.  This is the place for questions by the way.  Here is some information on radiation that explains the alphabet soup of types. Welcome here and we are always here to help you.

Stay the course.

Tom

 

[Judy M.]

Hi

I've had SBRT type radiation on 4 different tumors. My side effects were simply a bit of fatigue and they worked quite well. Totally eliminated one tumor in my lung and knocked back other two tumors in my lung to below cancer level for over a year. Had it on an adrenal tumor and the effect on that one wasn't as long lasting. Radiation Oncologist told me SBRT is 90% effective on lung tumors and 50-80% effective on adrenal tumors. I wholeheartedly agree with Tom that you need to get a Radiation Oncologist on board. SBRT concentrates a large amount of radiation (very large) on the tumor itself then amount drops off steeply as it moves outward toward other organs, but is still there. So. there will be a concern about where your mom's tumor is located and what other organs are near and how much radiation those will receive. Cannot be done sometimes for that reason, but only a Rad. Oncologist can make that call. Also, it appears your mom is on some pretty strong chemo and it's working. They will sometimes not do SBRT at the same time as chemo because of concern about the patient being able to tolerate the cumulative effect of having both. And your mom is 75. I was 64 and in good health and the Rad. Oncologist would not agree to me having the SBRT concurrently with Chemo. I had to wait until after to have it.. But I had it on all 3 lung tumors concurrently. The treatments are not painful, and take little time. The only other issue I can think of is possible burn to skin at radiation site. I had none from SBRT  but have had some with standard radiation. You just need to take very good care of skin in that area and Rad. Oncologist can tell you how. Or jump back on here and I'll tell you how I did it. I'm a big fan of SBRT if your mom's tumor is in the right place and she's a candidate. Hope some of this helps. I wish you and your mom the very best. 

Judy M

[Paige]

Hi Tom and Judy!

Thank you SO much for all your info and detailed answers. Sorry for the delay in getting back with you but as I’m sure your aware, everyday brings something new and unexpected. If u don’t mind, I do have a couple questions?

 

Tom, You stated you achieved “no evidence of disease or NED”. Sorry to be so clueless but what is NED?😆😆

 

The good Oncologist we’re currently seeing is a medical oncologist. However, he is not the one that stated he was worried about side effects, he stated it, as I believe as an excuse, from “The Board”, thinking I would just accept it and let it go. In actuality, he had already told us the board didn’t want mom to do ANYTHING at this point, including maintenance therapy, do a repeat PET scan in 3 months and see if it progressed or not? Mom and I both thought that sounded like an ABSURD idea!!

 

In actuality, it was this dr that presented the idea of the SABR treatment, even though the board felt the way it did. He sounded excited about it and explained it to us to see what we thought. We thought it sounded great! He stated he would get with the dr at MD Anderson that day, who “might be able to present it to his board”, and if they agreed, he’d set us up to see the radiation oncologist.  We asked him to please do this but we wanted him to know that MD Anderson was not the final decision maker! Also, I wanted to further research it.

 

This is why I think there are “politics” in play here somehow. I was informed he never spoke with the dr at MD Anderson re the radiation. He just sent him an email thanking him for all his help and passed the idea of “Taxotere maintenance” only. When I pushed as to why, I was then told because “it was a concensus with the board” and when I pressed he came up with the board being concerned about side effects. 

 

What’s interesting is I pushed further asking if I missed something because  I did research based on the info he gave us, and I didn’t see a lot of side effects, especially nothing like she was having now. He NEVER answered my question! At that point he sounded rather frustrated and said if we wanted to see a radiation oncologist we could and he would go ahead and email MD Anderson.

 

Since my original post, I received a call from a nurse, not him, just like the first two calls I got before I insisted he call and discuss why radiation was not being discussed anymore. The nurse informed me that the local dr, the one all this was happening with, asked her to call and tell us he has not heard back from MD Anderson and we needed to tell them “yes” or “no”, did we want to see a radiation oncologist? I told them absolutely yes we wanted to at least meet with the radiation oncologists and discuss options. I was told they would forward the info and someone would get back with us. We r supposed to be doing another Taxotere treatment on  Sept 5 and having our appt with him at that time too. I’m sorry but the whole thing is VERY VERY suspicious and concerning! We have NO idea what to think which is why we are moving forward on our own, which we have had to do before or would not be here now! Mom might already be gone if we had not pursued, AND she wants to be here! She is doing pretty good and is not close to death or hospice or anything close to that! Sorry—-just so frustrated!!!!

 

My final question to you both? I’m going prepared with research I’ve done as well as other people’s experience with this type of radiation. When we meet with the radiation oncologist, can you tell me from your experiences what specific questions you would ask and what your biggest concerns would be?

 

I am so grateful for u taking the time to read my posts as well as offering such wonderful info and advice! The info on SUVs was soooo helpful!!!!

 

I am so glad u both overcame such difficulties and are doing so much better. U really do offer us hope!!!! Thanks again and have an excellent day!! 

 

Paige

[LexieCat]

Hi, Paige,

I don't have any suggestions regarding radiation or your research/treatment issues, but NED is short for "no evidence of disease."  Since it's impossible to say for sure someone has been "cured" of cancer (because there could be cells lurking somewhere that will cause an eventual recurrence), we use the term "NED" to mean there is currently no sign of active cancer.  Which is the best result any of us can really hope for.

[Tom Galli]

Paige,

Lexie defined NED - no evidence of disease. We use this term as opposed to "cure" because lung cancer recurs so frequently after treatment that supposedly "cured" it.  

I wouldn't know about politics in the medical profession. Let me see if I can make this simple.  Unless your mother's insurance requires it, you do not need a referral to see a radiation oncologist. Google them up in your hometown and call for an appointment.

You mom was diagnosed with Squamous Cell at Stage IV.  She's completed first line chemotherapy -- Carboplatin and Taxotere -- according to your first post.  She did not receive conventional radiation with adjuvant chemo which is the normal first line treatment for Stage IV Squamous cell.  Do you know why conventional radiation was not included in her first treatment?

Be mindful I'm not a doctor but a doctor thinks your mom needs to have more chemotherapy (Taxotere), and a change in recipe is not unusual if a tumor is still present after first line treatment.  So, if it were me, I'd have the Taxotere while I was seeking out a radiation oncologist to consult with. Therefore, I wouldn't cancel the September 5th treatment.  Yes, there may be adverse side effects but there also may a positive impact on her tumor.

Among questions I'd have for the radiation oncologist are: (i) is the tumor in a position that allows for safe treatment by conventional or precision radiation,;(ii) can radiation be administered concurrently with Taxotere; (iii) what type of radiation will yield the best results; (iv) are there any complications with radiation treatment given your mom's current state of health; (v) will radiation have a better chance of eliminating the tumor than chemotherapy; and (vi) if you (the radiation oncologist) were in my mother's situation, would you have radiation or chemotherapy or both as a second treatment.

Stay the course.

Tom

[LaurenH]

Hi, Paige,

How are you and your mom doing? Please post an update when you can. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Judy M.]

Paige

Tom pretty much covered the questions to ask the Radiation Oncologist thoroughly so I have nothing to add. Hope you've gotten to see one by now. Please update us on how things are going. 

Judy M.