Author Topic: Another Cyber Knife Patient  (Read 1582 times)

Ken35051

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Another Cyber Knife Patient
« on: August 17, 2019, 10:20:35 am »
I am 72 years old and live in the Birmingham, Alabama area. I have had a hearing disability and tinnitus for the past 50 years as a result of military service and have worn hearing aids in both ears for about 20 years now.

I was diagnosed with an Acoustic Neuroma in my right ear about 5 years ago and I was in “watch and wait” status until this month (August 2019). When it was discovered, my tumor measured about 5 x 4 mm, or so I was told. I didn’t worry much about it at first since doctors were telling me that it was so small that it might not ever amount to anything or cause me any problems. I had MRIs and audiology exams to monitor changes on an annual basis at first and then later every 6 months.

By October 2018, my tumor had grown to 8.5 x 4 mm and the Otolaryngologist that I was seeing at the time suggested that I consider doing something about it. That’s when I got serious about learning more about ANs and what my options were. My biggest help was in joining the ANA and reading about Forum members’ experiences and what they learned in their journeys.

Early on in my research, I decided against a surgical option even though my Otolaryngologist suggested he perform the Translab procedure. He was a little too casual about it when I raised the issue of a complete loss of hearing due to the surgery and he told me “You can’t hear anything in that ear anyway”. My thoughts were that even though my hearing was bad, I could still hear something with hearing aids and I was not ready to give it up. Of course, I had other concerns about surgery and possible recovery problems as well.

I made an appointment with a radiation oncologist at the University of Alabama at Birmingham and met with him in January 2019. He was very personable and seemed quite confident that he could perform the procedure without any problems. He proposed using UAB’s Linear Accelerator (The Edge) with a Single Fraction Radiosurgery (not fractionated). It was my understanding that their Linear Accelerator had been upgraded in recent years for use with brain tumors and he claimed that it was far superior to a Cyber Knife or Gamma Knife. He also encouraged me to consider getting the procedure done as soon as possible to save what I could of my hearing. He told me that I cannot regain what has been lost but the sooner the tumor is treated the better the chances of saving my remaining hearing in that ear.

My April 2019 MRI summary noted that my tumor was now at 9 x 5 mm and that “The right cochlear and facial nerves continue to display anterior displacement”. Furthermore, my audiology test results showed that my ability to understand words in my right ear had deteriorated from 60% in August of 2017 to 44% in April of 2019. I was also starting to have some balance issues and it seemed that I was becoming less steady on my feet. I decided that it was time to get something done even though I had not noticed any other serious symptoms yet.

I still had some doubts on having the procedure done at UAB so I sent my records by Fed Ex to The Barrow Neurosurgical Second Opinion program. There is a $100 charge to get a second opinion from them. I was very disappointed with their response. It was hard to get anyone to answer the phone or respond to voice or emails and they couldn’t even find my records until a week after Federal Express said they had been delivered. I had to make a follow-up call to get them to look for my records in their mail room. When I finally got a report, it was somewhat generic and seemed to stress more of a surgical approach (I guess their name should have been a clue to me on that). The person who did the report was a neurosurgeon.

So, I realized that if I wanted to talk about radiosurgery, I needed to find an individual who specialized in that field and had a known reputation for dealing with Acoustic Neuromas. In going through the ANA Forum, Dr. Steven Chang’s name at Stanford comes up quite often. So, I put together another package of my past MRI’s and audiology test results and sent it out to Stanford. I was told when I called to get the mailing address that Dr. Chang does NOT do consultations over the phone. That was a change from what some earlier Forum members had reported.

The next morning after Fed Ex said the package had been delivered, Dr. Chang’s nurse called me and said that Dr. Chang had reviewed my records and he recommended a Cyber Knife treatment in three sessions. She suggested that I make an appointment and come in to discuss the procedure in more detail.

So, my wife and I made an appointment in early July 2019 and visited Dr. Chang in Palo Alto. It was a good trip and we were very impressed with Dr. Chang and his team. I had prepared a list of questions for my appointment and my list including Dr. Chang’s response is as follows:


1.   From my last two MRI’s, does the comment that indicates the tumor is pressing against the facial nerve and cochlea affect the type of procedure that should be done? Can the tumor be effectively treated with radiation without damaging the facial nerves or cochlea?

Answer: Any AN will press against a nerve. So, my situation is no different than any other. Nerves and tumors have different tolerances for radiation and the nerves are less likely to be affected by the radiation than the tumor.

2.   Even though my tumor is relatively small, do you see any advantage for continued Watch and Wait?

Answer: No. The size of the tumor as it is now is ideal for the CK procedure. Further Watch and Wait will not improve my symptoms and are likely to result in further loss of hearing (on a more rapid basis) and the development of other symptoms.   

3.   Even though my hearing is not good in my right ear, I do still have some function there, especially with hearing aids. Since the tumor is still small, is it likely that I will retain most of my present level of hearing in that ear after a procedure? Will it be likely to deteriorate in the future any more rapidly after the radiation?

Answer: Dr. Chang does not expect the CK treatment to affect my hearing one way or the other. It is likely that I will continue to lose my hearing over time but it will not be any worse than if I did not have the CK done at all.
 
4.   My understanding is that you would propose to treat my tumor with a fractionated series in three sessions. Will they be on three consecutive days?

   Answer: Yes.

-   What is the advantage of doing the fractionated FSR approach rather than a single SRS delivery?

Answer: To reduce chances of hearing damage and swelling.

-   How much radiation would be delivered in the three sessions? I have read that anything over 13 Gy can result in additional hearing damage.

Answer: The three sessions will be a little over 6 Gy each, however the cumulative effects are not the sum of each day’s dosage. The three sessions given one day apart provide an equivalent single dosage of about 11.5 Gy.

He provided an interesting analogy for this.
“If you were out in the sun for 45 minutes, you may be likely to get sunburned. However, if you spent time in the sun for 15 minutes on three consecutive days, your chances of sunburn are greatly reduced”.

-   How long will each session last?

Answer: Monday will be about half a day with getting a new MRI and CT scan. There will also be a fitting for a mask on the first day.

The actual CK procedure will not start until Wednesday and the total time each day with the setup would be about an hour but the actual time on the CK machine will be about 20 minutes. Prior to starting the procedure each day, I will be given a steroid to control swelling and an anti-nausea medication.

-   Can you generally deliver more radiation if the doses are smaller?

Answer: (See comment above).

5.   I assume that you have a team of specialists who perform the procedure. How many people are involved and what are their specialties?

Answer: There will be four people involved; Dr. Chang, Dr. Pollum (radiation oncologist) and two mathematicians to determine the settings for the Cyber Knife. 


6.   It is my understanding that Dr. Chang also performs surgeries as well as Cyber Knife procedures. What percentage of the procedures that he performs are surgical and if he were to do surgery on me, what technique would he recommend?

Answer: About half of the procedures that Dr. Chang performs are surgical. If he were to do surgery on my AN, he would choose Mid Fossa.

7.   I have spoken to a Radiation Oncologist at UAB (Dr. Bredel) in Birmingham and he proposed using a Linear Accelerator (The Edge) in a single session of 12.5 Gy.

-   How do you compare the Linear Accelerator to the Cyber Knife? Are they comparable as far as accuracy and collateral damage avoidance?

Answer: Stanford also uses a Linear Accelerator as well as the Cyber Knife. Dr. Chang said that the Linear Accelerator has a wider beam than the CK and he feels that he can pinpoint the beam with greater accuracy with the CK than he can with the Linear Accelerator. Stanford uses their Linear Accelerator for larger cancerous tumors.

-   My understanding is that the Linear Accelerator at UAB in Birmingham was upgraded several years ago and has only been used to treat Acoustic Neuromas for about the last 4 years or so.

Answer: My thoughts on this (not Dr. Chang’s) are that maybe the reason the LINAC was upgraded, was so that it could provide better accuracy. Dr. Bredel at UAB said his Linear Accelerator was more accurate than the CK. So, it is probably just a matter of preference and what they are used to.

8.   What are the chances of re-growth after radiation and what would be my options if that were to happen? I have read where some have been told that surgery after radiation is not a good option but that additional radiation is seldom an option either.

Answer: For my case, less than 2% chance of re-growth. Regrowth chances are greater for larger tumors. If a re-growth did occur, Dr. Chang would not rule out additional radiation.

9.   What are the chances of future malignancy due to the radiation?

Answer: About one in 20,000.

10.   Will my tinnitus and balance issues likely go away or lessen after a Cyber Knife procedure?

Answer: No. Actually, tinnitus is not a symptom that is located within the ear. It is in the brain. So, surgery or radiation to the ear will have no effect on tinnitus.

-   My understanding is that lost hearing will not be recovered

Answer: That is correct.

11.   What side effects should I expect? …. swelling, headaches, fatigue, etc.
 
Answer: Possibly some minor swelling and headaches. Some people experience fatigue but Dr. Chang thinks that may just be due to anxiety of the patient rather than anything related to the CK.

-   Will air travel after a procedure be affected (cabin pressure, etc)?

Answer: No.

-   Will it affect my ability to drive a car? Can I drive to and from my sessions?

Answer: No problem with driving. Some people who live around locally go to work after each session.

-   What about long term affects?

Answer: None that we have not previously discussed.

12.   If we do the procedure there at Stanford, how long should I expect to stay in Palo Alto?

Answer: Come in on Sunday afternoon and be ready to start the Prep (MRI and CT Scan) on Monday morning. Then nothing for me on Tuesday while they do their calculations and make up the face mask. The actual CK procedure would be on Wednesday, Thursday and Friday and I can plan to go home on Saturday.

13.   When they do the MRI, do they use a contrast dye without Gadolinium or other agent that could affect the kidneys?

Answer: This question was asked of both Dr. Chang and Dr. Pollom. Their response was that they were not aware of another contrast dye that did not contain Gadolinium. (I did not ask what they used if a patient DID have kidney disease).
I was told when I got my last MRI at UAB that they used a different contrast dye than previously and that this dye would not affect kidney function. I have since checked my MRI report summary and noticed that they listed the contrast dye as being “ProHance” and it is the same dye as was used at the previous three MRI’s. The difference was that the dosage was 10 ml this last time and previously it was 20 ml. Also, this last time they did NOT do the blood test to check kidney function.

14.   When should I expect to have to return to Stanford for follow-ups after the procedure is done?

Answer: Probably no need to return to Stanford for follow ups. Follow up MRI’s can be done in Birmingham and sent to Dr Chang for review. He would like to see them at 6 months and 12 months following the procedure.

-   After the first year, would you recommend follow ups every one to two years?

Answer: Yes.

15.   I have my medical insurance through Medicare with an AARP Supplement which is administered through United Health Care. I want to make sure that my medical costs will be covered by my Medicare policies.

Answer: Stanford accepts Medicare and all Supplement plans.


So, based upon my confidence in Dr. Chang and his team, I made an appointment to go through the Cyber Knife procedure next week (week of August 19) and I will report that experience with my next post. I am hopeful that, with my tumor still fairly small, my post treatment issues will be minimal.

Ken

Ken

notaclone13

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Re: Another Cyber Knife Patient
« Reply #1 on: August 17, 2019, 01:55:25 pm »
Hi Ken,
I know I speak for many in thanking you for sharing such a detailed account of your decision process. I think you made the right decision as Dr. Chang appears to have treated more ANs by CK than anyone else in the country. In fact, AN patients from all over the world travel to Stanford for their treatment. We  look forward to getting your updates as you go through the treatment and healing process. Hope you have smooth sailing and the best possible outcome.

M.A.

jami

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Re: Another Cyber Knife Patient
« Reply #2 on: August 18, 2019, 01:11:13 pm »
I echo the thanks, its helpful to see the thought process.

Re: air travel - I always wondered this and even though all the medical professionals told me there would not be an issue, I worried. My experience - I had surgery last year and then CK 6 months later, and so far have traveled 93K air miles in 2019 (I lead a global team and do some travel due to that). I have had really bad headaches a few times, but i think they may be due to the noise (surgery, white noise) and a sense of being overwhelmed. Never had a problem with the pressure. (the end of the story -- I now have a medical exemption that allows business class so its easier to rest on the 12+ hour flights, and I give myself an extra day to adjust to time zones).
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

Ken35051

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Re: Another Cyber Knife Patient
« Reply #3 on: August 27, 2019, 07:22:48 pm »

My Cyber Knife procedure with Dr. Chang at Stanford Health Care in Palo Alto went very well last week (August 19th through 23rd). Everything happened pretty much as expected and scheduled. On Monday, I had another MRI and a CT scan. The MRI showed that my tumor had grown another millimeter since last April (now at 10 mm) but I realize that could have just been because it was done with a different MRI machine in Birmingham.

On Monday, they also made up my mask. It was shaped from a mesh type plastic sheet (with perforations/slots) that was placed over my face and stretched to snugly fit while it was still warm and workable. Picture the face being shrink wrapped. The eye holes were large enough so that I could barely see the edges of the mask and so there was no feeling of claustrophobia. A flange was fitted to the back side of the mask to anchor it to the table and restrict movement while the Cyber Knife is working. If, at any time, I had a need to stop the process, I would raise my hand and signal to the operator.

On Wednesday, Thursday and Friday, I had my sessions with the Cyber Knife. The CK machine was very quiet with a barely audible humming sound as it traveled around my head. It was nowhere near as noisy as an MRI machine. I was given a choice of music to listen to and, other than that, the room was very quiet. On the first day, I was asked if I wanted a steroid or nausea pill but I was feeling fine so I told them that I did not feel the need for it yet. I did not take any meds on any of the three days. Each of the sessions took about 45 minutes or less including the 20 minutes that was actually under the CK machine. I was given 6 Gy of radiation in each of the three sessions for a total of 18 Gy.
 
Each session was painless and I felt absolutely nothing. Afterwards, I kept expecting some minor headaches or stuffy head issues as some individuals on the forum have reported but that did not happen with me. Because the procedure was given around mid-morning of each day, there was time to do some sightseeing around the area afterwards. As of this writing, I have had no need for any anti-inflammatory meds or steroids and my head still feels normal.

I had not realized that the CK machine would travel all the way around my head and actually could direct the radiation from the left side of my head, through my brain and to the tumor that is on my right side. That was a little bit disconcerting to me but I suppose they had to get to the tumor from all sides.

On Friday, after my last CK session, I had a wrap up meeting with Dr. Chang. He did not expect that I would need to come back to Stanford for any follow up appointments. He does want to see MRI’s taken at 6 and at 12 months after the CK session. He will be sending a prescription-like reminder to take to a facility near my home to have the MRI’s done locally. Then, I can send him a CD with the results. He cautioned that the first couple of MRI’s may show that the tumor has actually grown some but that will likely be due to swelling from the CK and that could take a year or more before the swelling dissipates.

In summary, I am very pleased with my choice of Dr. Chang and his team at Stanford to perform this procedure. I know there are a lot of proponents of “Watch and Wait” on this Forum but I firmly believe that when you know the tumor is growing, having the procedure done while it is still small will greatly increase your chances of a successful outcome with minimal post treatment side effects. Time will tell for me and I will update this post from time to time if anything changes.

Ken

Ken

Freelander

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Re: Another Cyber Knife Patient
« Reply #4 on: August 31, 2019, 09:05:20 am »
Good information and thank you for sharing it with us.  Best wishes on your journey!

jami

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Re: Another Cyber Knife Patient
« Reply #5 on: September 02, 2019, 02:24:10 pm »
Thanks for sharing your details - hope recovery is still going great!
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

Ken35051

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Re: Another Cyber Knife Patient
« Reply #6 on: September 03, 2019, 07:29:20 pm »
Thanks for asking Jami, Freelander and Notaclone13.

I'm almost two weeks post CK now but have not noticed any problems yet. The tinnitus may be a little louder but that's hard to say since it often varies in pitch. So far, I have been able to go about my day to day activities without any difficulty or discomfort. I'm still quite pleased with my trip to Stanford and Dr. Chang's team there.

Keep your fingers crossed for me.

Ken
Ken

jami

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Re: Another Cyber Knife Patient
« Reply #7 on: September 07, 2019, 01:13:13 pm »
So glad to hear you are doing well!
Jami
-----
5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment
10/23/19 0.7 x 0.3 x 0.8 cm

SP

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Re: Another Cyber Knife Patient
« Reply #8 on: October 03, 2019, 08:00:54 pm »
Hi Ken,

Thanks for posting such a detailed account of your experience and the Q&A with Dr Chang. I had the same treatment at Stanford in August 2015, so it was interesting to remember that experience through your post. I was also disconcerted when the CK machine was located and working to my right side when my tumor is on the left! A good thing to note for those going in to do CK.

I'm very glad things went well for you & wish you the best of health & wellness  :).

Stella

2.9 cm Left AN (Mar 2019)
2.9 cm Left AN (Aug 2018)
3.1 cm Left AN (Aug 2017)
3.2 cm Left AN (Aug 2016)
3.2 x 3.0 x 2.5cm Left AN (Aug 2015) ==> CK @ Stanford, August 17 - 19, 2015 (Drs. Chang & Soltys)

azdreamer

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Re: Another Cyber Knife Patient
« Reply #9 on: December 07, 2019, 03:59:52 pm »
Ken
I too am 72 years old.  I discovered my M tumor located in my left CPA in 2016 and it continued to grow until it reached 1.77cm and I was told now or never for best results with CK.  So in August 2018 I had 3 sessions of CyberKnife which sound very similar to your experience.  My last MRI was the one year mark and it showed the tumor still swollen but "stable", not growing.  I had my CyberKnife treatment in St. Paul, MN at MN Oncology which is part of the United Health Network.  My Radiation Oncologist is Dr. Ellen Bellairs.  My NS is Dr. Leslie Nussbaum also of St. Paul, MN.  These doctors worked as a team to treat my tumor.  If anyone is living in the area and looking for an opinion regarding radiation treatment of their brain tumor, I highly recommend these two doctors and the entire CK team at MN Oncology.  My experience sounds almost verbatim to yours at Stanford. 

 


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