Radiation or Surgery

[SouthpawsMom]

Hi all! my 11 yo boy Southpaw was just officially diagnosed with Acro yesterday. He was diagnosed with diabetes in June and after home testing and increasing doses I took him into internal medicine because his numbers didn't seem to be getting any better and we were up to 5u of Lantus. Lo and behold that itty bitty tumor was found on his pituatary. We are now speaking to a bunch of doctors regarding our next steps for treatment and I wanted to get some perspective from those who may have done this.

We are highly considering doing the surgery. My reasoning for wanting the surgery is I want the chance of a cure to get as long as I can out of my boy. I understand the risks of the surgery, including potential for behavioral changes but I am finding it so hard to accept that radiation will only help for so long. I was hoping those of you who have done one or the other could share your experience with me and why you chose the option you did. I am based in the US so the surgery is not as accessible here but we are willing to travel with him. The financial aspect of either is not a factor in our decision.

 

[Wendy&Neko]

Hello and welcome to you and Southpaw.

What place would do the surgery? You want to make sure it's a surgeon with lots of experience. We've seen a couple North American kitties here get surgery in New York, and one member with acro brothers who each went to Washington State U. Royal Vet Clinic in London has the most experience world wide.

When I asked the folks at the Royal Vet Clinic what the average life span was after surgery, it wasn't much different from what my Neko had after stereotactic radiation therapy (SRT). But each cat is different, and survival times vary a lot. As the IM vet said who looked after Neko when she was getting her SRT, these cats are older and often pass from other diseases. Of the other 3 acrocats with active members at the time we got SRT done, and also had SRT done, Neko lived the longest (4.5 years post SRT). But two of them passed from completely unrelated cancers.

Let us know what you decide to do. I like to keep in touch and hear treatment goes. Especially helpful for future acro kitties that stop in here.

 

[SouthpawsMom]

Hello and welcome to you and Southpaw.

What place would do the surgery? You want to make sure it's a surgeon with lots of experience. We've seen a couple North American kitties here get surgery in New York, and one member with acro brothers who each went to Washington State U. Royal Vet Clinic in London has the most experience world wide.

When I asked the folks at the Royal Vet Clinic what the average life span was after surgery, it wasn't much different from what my Neko had after stereotactic radiation therapy (SRT). But each cat is different, and survival times vary a lot. As the IM vet said who looked after Neko when she was getting her SRT, these cats are older and often pass from other diseases. Of the other 3 acrocats with active members at the time we got SRT done, and also had SRT done, Neko lived the longest (4.5 years post SRT). But two of them passed from completely unrelated cancers.

Let us know what you decide to do. I like to keep in touch and hear treatment goes. Especially helpful for future acro kitties that stop in here.

Thank you so much for the response! We would likely be going to Texas A&M to have the procedure. Unfortunately, Dr. McCue in NYC no longer performs the surgery (my sister-in-law is a vet and called him to ask about the surgery and he indicated that where he works now is not set up for it). We're in NJ so that was unfortunate to hear but we preserver regardless. I have an appointment to discuss SRT next week and hoping to consult with Texas soon after regarding the surgery.

I am trying hard not to get caught up in the "survival" rate but it's so hard not to. Like you said, many of these cats are older so they could be passing from completely unrelated issues. Everyone I have spoken to has indicated that the success and survival of these cats whether it be SRT or surgery is all over the place so hard to really base a decision on that. My boy seems to be early in his acro journey so I was hoping for a success with surgery and curing the acre even if it brings forth other smaller issues. It's such a tough choice! I just want to do what's best for my boy that will giving him many more quality years.

 

[Wendy&Neko]

The first thing to ask Texas A&M is how many hypophysectomies they have done on cats with acromegaly. We haven't had any members here go there for the surgery so no experience to point to.

As far as individual cats go, survival times are really all over the place. We've even seen acros with no treatment live for 5+ years. Not common, but it has happened. One even went off of insulin eventually, after getting to an insulin dose of over 50 units. Here is one such long timer's story: Freckles 6 years with acromegaly. The cabergoline medication is also helping a lot of cats, and more cost effective. If you are talking to someone about SRT, make sure to ask about Cyperknife as that also has seen good results. And the original place offering it is Yonkers.

 

[Jodey&Eddie&Blue]

Thank you so much for the response! We would likely be going to Texas A&M to have the procedure. Unfortunately, Dr. McCue in NYC no longer performs the surgery (my sister-in-law is a vet and called him to ask about the surgery and he indicated that where he works now is not set up for it). We're in NJ so that was unfortunate to hear but we preserver regardless. I have an appointment to discuss SRT next week and hoping to consult with Texas soon after regarding the surgery.

I am trying hard not to get caught up in the "survival" rate but it's so hard not to. Like you said, many of these cats are older so they could be passing from completely unrelated issues. Everyone I have spoken to has indicated that the success and survival of these cats whether it be SRT or surgery is all over the place so hard to really base a decision on that. My boy seems to be early in his acro journey so I was hoping for a success with surgery and curing the acre even if it brings forth other smaller issues. It's such a tough choice! I just want to do what's best for my boy that will giving him many more quality years.

Hello and Welcome to you and Southpaw,
I'm the member @Wendy&Neko referred to with regards two brothers having acromegaly and our journey with both surgery and radiation. Both brothers had transphenoidal hypophysectomy @ WSU with Tina Owen, Annie Chen-Allen and Linda Gail Martin. WSU not doing hypophysectomy and longer but Annie Chen-Allen is performing surgery now at a clinic in Bend, Oregon.

Our journey was long and storied. You can probably find some here, although I think some was lost when the website transitioned to this version. But one thing I want to say, especially with regards the issue of "survival rates": surgeons will tell you up front that the surgery is high-risk but that's just a fact and one decides or not. I think what is important with regards efficacy of either surgery or radiotherapy is the location of the tumour in relation to other brain areas/functions. Silver tabby, Blue, was diagnosed in 2017, had surgery in early 2018 and lived until August of 2023 when he was having an MRI prior to radiation to address a small regrowth. Complications arose because of acromegaly's effects to his heart. His brother, Eddie, has a much more serious placement of the tumour in relation to his brain stem.

I say all this because it might help you to make a decision regarding a treatment plan, which an MRI can help you to determine. It's great that his tumour is so small! And sill on 5u. As for behavioural changes, Blue just seemed to get more chill. He always a Zen master of a cat.

I really wish you and Southpaw all the best. You've come to the right place with FDMB, for sure. Really good people.

 

[SouthpawsMom]

Hello and Welcome to you and Southpaw,
I'm the member @Wendy&Neko referred to with regards two brothers having acromegaly and our journey with both surgery and radiation. Both brothers had transphenoidal hypophysectomy @ WSU with Tina Owen, Annie Chen-Allen and Linda Gail Martin. WSU not doing hypophysectomy and longer but Annie Chen-Allen is performing surgery now at a clinic in Bend, Oregon.

Our journey was long and storied. You can probably find some here, although I think some was lost when the website transitioned to this version. But one thing I want to say, especially with regards the issue of "survival rates": surgeons will tell you up front that the surgery is high-risk but that's just a fact and one decides or not. I think what is important with regards efficacy of either surgery or radiotherapy is the location of the tumour in relation to other brain areas/functions. Silver tabby, Blue, was diagnosed in 2017, had surgery in early 2018 and lived until August of 2023 when he was having an MRI prior to radiation to address a small regrowth. Complications arose because of acromegaly's effects to his heart. His brother, Eddie, has a much more serious placement of the tumour in relation to his brain stem.

I say all this because it might help you to make a decision regarding a treatment plan, which an MRI can help you to determine. It's great that his tumour is so small! And sill on 5u. As for behavioural changes, Blue just seemed to get more chill. He always a Zen master of a cat.

I really wish you and Southpaw all the best. You've come to the right place with FDMB, for sure. Really good people.

HI there! This is fantastic information thank you! The neurologist didn't tell me exactly where the tumor was just that it was very small so I am going to check back with him on its location. What about Eddie? How did he respond and handle the surgery?

 

[Jodey&Eddie&Blue]

HI there! This is fantastic information thank you! The neurologist didn't tell me exactly where the tumor was just that it was very small so I am going to check back with him on its location. What about Eddie? How did he respond and handle the surgery?

Hi back! Eddie had the surgery in December 2020. His surgery was high risk and, tbh, it was really stressful. With Blue hypophysectomy and recovery took just over a week but Eddie had complications and had dehiscence of the incision in the roof of his mouth. It happened twice and he was in hospital nearly a month. But remember the dehiscence was about the surgical complication, not the removal of the pituitary and tumour. His tumour was large and they could remove only 60-70%, which led us to radiotherapy down the road, twice. Surgery was hard on Eddie as was his recovery but he did have some really good years afterwards. I've said it before and I'll say it again: I would travel this 7 year journey with the two of them all over again, in a heartbeat.

Best of luck!

 

[SouthpawsMom]

Hi back! Eddie had the surgery in December 2020. His surgery was high risk and, tbh, it was really stressful. With Blue hypophysectomy and recovery took just over a week but Eddie had complications and had dehiscence of the incision in the roof of his mouth. It happened twice and he was in hospital nearly a month. But remember the dehiscence was about the surgical complication, not the removal of the pituitary and tumour. His tumour was large and they could remove only 60-70%, which led us to radiotherapy down the road, twice. Surgery was hard on Eddie as was his recovery but he did have some really good years afterwards. I've said it before and I'll say it again: I would travel this 7 year journey with the two of them all over again, in a heartbeat.

Best of luck!

This is all such great information and gave me some great questions to ask the dr. when I have our consult. What made you go with surgery over radiation for initial treatment?

 

[Jodey&Eddie&Blue]

This is all such great information and gave me some great questions to ask the dr. when I have our consult. What made you go with surgery over radiation for initial treatment?

In the beginning, which was 2017, it was difficult to find information on acromegaly as it was new to me and I didn't know where to look. I spoke at length with the IM vet here and with the vets at WSU. It really seemed the best way to go and the only radiation available in 2018, that I was aware of anyway), was fractionated radiotherapy, which Blue ended up having as he had a small regrowth six months after surgery. It consisted of him having to be at WSU for nearly 3 weeks and have modest doses of radiation every day for 5 days and have weekends off. I drove to Pullman (8 hours) to visit him midway. It was effective insofar as it lasted years...

 

[SouthpawsMom]

In the beginning, which was 2017, it was difficult to find information on acromegaly as it was new to me and I didn't know where to look. I spoke at length with the IM vet here and with the vets at WSU. It really seemed the best way to go and the only radiation available in 2018, that I was aware of anyway), was fractionated radiotherapy, which Blue ended up having as he had a small regrowth six months after surgery. It consisted of him having to be at WSU for nearly 3 weeks and have modest doses of radiation every day for 5 days and have weekends off. I drove to Pullman (8 hours) to visit him midway. It was effective insofar as it lasted years...

That makes perfect sense. Originally, the neurologist we see told me that was the radiation option and I was a little caught off guard when he told me it would be 5 days a week for 4 weeks. However, after he spoke to oncology he informed me that SRT would be the treatment here. I really appreciate your input as I navigate this stressful decision. Hearing from people who have actually experienced this is helpful especially since it seems that each dr. I speak to has a different perspective on treatment. I am so sorry for your loss of your kitties but it sounds like they couldn't have had a better family.

 

[Wendy&Neko]

SRT is typically one day of CT scan, then either 1 or three days of radiation therapy. Three days is more common but some places do 1 depending on circumstances. Neko had SRT twice - her tumour came back after 3 years and I had it done for another cat for a different condition. As long as your cat is reasonably healthy, you drop the cat off in the morning and they stay with you overnight before going back in the next day. Neko's experience and the other kitty's at a completely different location with different doctors, was very similar.

The 5 days a week for 4 weeks is a very old protocol for this. SRT had beams coming from different directions, limited the amount of damage on surrounding tissue. Since the pituitary is part of the brain, this is very important.

A couple older posts you might want to poke through, many people have had to make decisions on treatment - note there may be more up to date information since they were written:
unpublished UK paper on 68 hypophysectomy cases

Mister has very high IGF-1, what are my options?

 

[SouthpawsMom]

SRT is typically one day of CT scan, then either 1 or three days of radiation therapy. Three days is more common but some places do 1 depending on circumstances. Neko had SRT twice - her tumour came back after 3 years and I had it done for another cat for a different condition. As long as your cat is reasonably healthy, you drop the cat off in the morning and they stay with you overnight before going back in the next day. Neko's experience and the other kitty's at a completely different location with different doctors, was very similar.

The 5 days a week for 4 weeks is a very old protocol for this. SRT had beams coming from different directions, limited the amount of damage on surrounding tissue. Since the pituitary is part of the brain, this is very important.

A couple older posts you might want to poke through, many people have had to make decisions on treatment - note there may be more up to date information since they were written:
unpublished UK paper on 68 hypophysectomy cases

Mister has very high IGF-1, what are my options?

Thank you! The oncologist we spoke with today said he does SRT 5 times over 5 consecutive days. He claims by doing it 5 times he can give a 20% higher total dose but 25% lower dose per day to mitigate long term issues. When I asked him about recurrence he really didn't have an answer. He said he has never treated any recurrences which seemed odd to me.

 

[Wendy&Neko]

Neko was the first kitty CSU ever treated for recurrence, but not their last. They said they knew of others, but people don't always decide to treat again. Like Jodey with Blue and Eddie, we don't represent the norm. A lot depends on how well they are doing at the time. Not sure it's been well studied for SRT. I think there might be numbers for recurrence with hypophysectomy.

Neko's second SRT she only had one dose. After her CT scan they had problems with pulling her out of anaesthesia including heart block, so they didn't want to do multiple days. Thankfully CSU is a teaching school and had a cardiologist on staff. There are risks to anaesthesia with acro cats. Neko had a clean echocardiogram 3 weeks before her second SRT and the heart incident. Reducing the number of times of anaesthesia is good. Make sure he has an echcardiogram first. Though Neko showed that things can change quickly.

 

[Jodey&Eddie&Blue]

That makes perfect sense. Originally, the neurologist we see told me that was the radiation option and I was a little caught off guard when he told me it would be 5 days a week for 4 weeks. However, after he spoke to oncology he informed me that SRT would be the treatment here. I really appreciate your input as I navigate this stressful decision. Hearing from people who have actually experienced this is helpful especially since it seems that each dr. I speak to has a different perspective on treatment. I am so sorry for your loss of your kitties but it sounds like they couldn't have had a better family.

Just one more thing: while that fractionated radiotherapy was all that was available at the time, both Blue and Eddie did have SRT down the road. Eddie had SRT twice and Blue had it once. He was going to have it a second time but went down under anesthesia. It's complicated with the heart; prior to this occasion his echocardiogram showed no irregularities like @Wendy&Neko . And Eddie's was ok as well. Of course, Eddie's heart was not the problem. Just make sure the echocardiogram is first on the list. All best.