Review – Former lung cancer patient tells her story

Kathy Brandt was diagnosed with non-small cell lung cancer in 2011 at her local hospital. After much research, Kathy chose proton therapy for her lung cancer treatment. Discover Kathy’s story, who is now cancer free.

« You hear the words cancer and it’s truly terrifying. It was basically just a checkup with my pulmonologist because I have emphysema. He sent me for a chest X-ray and that is when they found the tumor in my lung.

It was a terrifying time and thankfully I had strong family surrounding me – strong family helping me make decisions about what kind of treatment I should have. My brother-in-law, who is a physician, along with my pulmonologist suggested I go to Penn Medicine for treatment.

I was diagnosed with non-small cell lung cancer at the end of June. My surgery was the beginning of August and chemo started in September. It was finished in November. I started proton therapy for lung cancer in December, which lasted for 4 weeks.

I decided to go with the proton radiation because of the cancer’s proximity to my heart and spine. I chose proton therapy because I knew it would be more precise and would have less side effects and that was very important to me.

Every day, I would leave work, come home, and my husband would take me to Penn for proton therapy. After the treatment, we’d go home and I’d spend time with my grandchildren and their parents, who were living with us at the time. I really felt wonderful. I continued to work the whole time I had proton therapy – I never missed a day of work, actually. I was a bit more tired than usual, but that was really the only side effect I felt.

When I completed proton therapy, I rang the bell. Everybody in the waiting room clapped, and we went home and I think I had a very big glass of wine after treatment was finished.

Today, I don’t sweat the small stuff. I would tell anyone to feel very comfortable in choosing proton therapy simply because of the fewer side effects and its extreme precision. I cannot say enough good things about my experience. »

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Part 5 – In the search for the best cancer therapy option, “knowledge is power”

The radiation treatment options for their daughter Georgia’s cancer were still being sorted out by Becca and Nick at their Manila home.

They were getting conflicting advice from members of the medical team. One advised IMRT. Another SRS. They were awaiting word from London about Proton Therapy. And out of nowhere another option appeared.

In early October, Becca wrote on her blog, The Helping Georgia Fund: “Today we went to Makati Med [another hospital in Makati City] and met with a radiation oncologist who uses Tomotherapy. We found him to be very informative and helpful. He has only had the machine since March and is really impressed with it. Basically from what we can understand it is different from IMRT because it is helical and can turn 360 degrees around the tumor whereas IMRT delivers a straight line of radiation.

“We did not even know that this option was available in the Philippines until last week when our radiation oncologist mentioned that she had spoken to this doctor and would we like to meet with him.

“Sometimes this process seems so random how we find things out and it is only by constantly pushing and questioning that we go on to find out more information. So the next step is to email the UK with this information and then see what they suggest. Once we have done G’s PET scan we will also pass this on to the Doc at Makati Med and get a full assessment off him.

“We were very struck with the difference between Makati Med and St. Luke’s. Makati Med was so busy and we really felt like we were in a hospital. It was full of noise, people and activity going on all around us. Whereas St. Luke’s has the feel of a hotel and is very quiet and pleasant with a pianist playing in the lobby!

“I think we have been lucky so far as we really like our Oncologist here and it is thanks to her that we learned about the P53 gene therapy. But now we have hit a wall as St. Luke’s just don’t have what G needs when it comes to radiosurgery.

“To know that Tomotherapy is available at Makati Med is reassuring but still we have to constantly question what is the safest option for G. The doctor today said definitely Tomotherapy over IMRT and he did not agree with giving one high dose of radiation. He pointed out that with pediatrics they try and keep the dose low because of the side effects. The higher the dose the higher the risk of side effects.

“I did ask both radiation oncologists what they would do if given a choice as to the best treatment for G and they both said Proton would be their first choice but also pointed out that it is not available to many people.

“The Makati Med doctor also said that if Proton is not available then Tomotherapy over IMRT or SRS. So now we wait and see what the UK and Germany suggest.

“I know the UK is not always a great advocate of Proton as it is not offered on the NHS. But in some cases they do recommend patients for Proton. As far as safety goes, Proton is good as there is — no exit dose. The radiation goes in and then drops off into the tumor and does not exit the body in any other place.

“With Tomotherapy there will be an exit dose but it is low. Is that safe enough considering where G’s tumor is? It is so near to many vital organs and of course her spinal cord.

“My head hurts from thinking about it all. We have to do the best we can for G but how do we raise funds for Proton in such a short time if that is what is needed? It was also pointed out that they don’t actually have the clinical research yet to show that Proton is in fact safer as there have not been enough patients to gather this sort of evidence. With Tomotherapy and IMRT, the chance of a secondary cancer due to radiation is apparently 6 percent. So, it is pretty low.

“So we keep going. We keep asking questions and researching and I hope soon that we are given some concrete options to work with.”

Part 4 – In the search for the best cancer therapy option, “knowledge is power”

October 7th was fast approaching for Becca and Nick. That would be the day they would learn if their daughter’s spinal tumor had shrunk in size.

Since mid-June, 3-year-old Georgia had weathered round after round of chemotherapy at St. Luke’s Medical Center in the Philippines. She had endured experimental gene therapy injected directly into her tumor and intravenously. The side effects were miserable.

Georgia’s continued treatment was reaching a fork in the road. Radiation therapy needed to be pursued. But which kind? Photon beams or proton beams?

“…It makes my stomach tighten just thinking about it all as the next step is radiotherapy,” Becca wrote in mid-September on her blog, The Helping Georgia Fund. “But we don’t know what kind and we don’t know where. What I do know is that G’s time just to be a little girl playing at home will be over as she faces the next stage of this journey.”

A few week later, Georgia lay within the MRI scanner. Becca shared the news with her family and friends. “This afternoon we had a text from our doctor saying ‘the reduction in the size of the tumor is remarkable – the radiologists weren’t able to measure it though because the margins are ill-defined.

“The big tumor in front of the spine is almost gone. What’s left are the small parts in-between the spine and some at the back.’ We knew from the scans when G was having the P53 injections that the tumor had shrunk a little each time but to have it confirmed is the best feeling. BUT I am also very cautious and wary of getting too over excited as she still has the tumor in places which are very difficult to reach.

“Our team still think that radiosurgery is the next phase of her treatment, and we know we still have a long way to go, but it is good, good news.

“When I really think about the impact of these words I just feel overcome and want to cry but at the same time we have to keep it together and focus on the next step.

“…I guess anyone who has been on this cancer journey never gets the luxury of fully relaxing their guard ever again, but believe me you do value and appreciate the good times and reading that text today was a good moment and we need to cherish it.”

Days later, Becca continued sharing her thoughts to family and friends: “We understand that doctors have different opinions but at the end of the day we need to know what the safest option for G is and also that the treatment has been done before.

“Our surgeon is very confident about doing SRS but she has never actually done it on a spinal pediatric patient before, only on the brain. As parents we have to look for the person with the most expertise in this area.

“To have two conflicting opinions is just confusing so we will obviously wait and seek more opinions. At this stage we are just thankful that we also have a team in London and Germany looking at G’s case.

“Our radiologist also mentioned that she had spoken to a doctor at Makati Medical (a hospital in Makati City about 10 minutes drive away) and they have something called Tomotherapy which is a CT scan machine capable of giving radiation and that they have used it successfully on spinal tumor patients. She did not know any more details so we are hopefully going to have a consultation with this doctor on Friday so that we can find out more and whether he has done it on pediatric patients.

“Yesterday we spoke to the radiation oncologist at St. Luke’s and she said that after looking at G’s latest MRI scan she still thought that IMRT – Intensity Modulated Radiation Therapy — was the way to go. This would involve 31 fractionated doses of conformal radiation over a period of six weeks. This would involve G being sedated 31 times, but she felt that because of the tumor being so near to the spinal chord and all her vital organs that this was the safest option.

“Later last night we spoke to her surgeon and she said that she felt that SRS – Stereotactic Radiosurgery was still an option. This is one high dose of radiation to the tumor. Her opinion was that the tumor has shrunk enough for her to be able to do this.

“We pointed out that she had the opposite opinion from the radiologist and her response was still that she felt SRS was the way to go and that it would not involve having to put G to sleep 31 times!

“Hmm, it has all left Nick and I feeling rather confused. Our doctor has said that she will go back to the radiologist and surgeon and ask all of the SRS team for their general consensus on what they think is the best option.”

Review – Little cancer baby saved

In March 2012, when he was 5 months old, Eli was found to suffer from pineoblastoma, a maligant brain tumor that arises in the region of the pineal gland, which regulates the wake/sleep patterns and seasonal functions.

Eli’s fontanelle was swollen and looked like a bruise on the top of his head. His worried parents took him to the hospital where the staff found something suspicious. An MRI revealed a mass and the doctors did a biopsy. Then, they had to tell the parents the horrifying news.

Eli’s mother remembers the call from Eli’s dad. “We need to go to the hospital,” he told her. “Eli has a brain tumor.” “I just sat there and cried and cried,” she said. “I couldn’t even move. It was devastating. I was so scared he was going to die.”

The family packed their car the next day and drove to St. Jude Children’s Research Hospital. By the time they got there, Eli’ tumor had almost doubled in size. His doctors went to work right away.

Eli began a treatment plan that included months of chemotherapy, surgery to remove the tumor and proton beam radiation therapy to kill the last malignant cells of the cancer and ensure it would not grow back.

There was a scary moment after Eli’s surgery. Eli’s parents worried that he had lost his happy spark. “We were very afraid his personality would change after the surgery, and for a couple of days, he didn’t laugh,” said Eli’s mom. “He didn’t smile at anyone. So we were like, ‘Oh no, is he gone?’ And then his older brother, Jude, came in, and he lit up.” Eli is back home now and cancer free.




Part 3 – In the search for the best cancer therapy option, “knowledge is power”

Life was a swirl for Becca and Nick as August concluded.

The ugly side effects of chemotherapy were taking a toll on Georgia, their 3-year-old daughter. Their 7-year-old son, AJ, deserved some quality attention apart from the day-to-day cancer care that consumed his parents. And they were packing up their household to move to a new neighborhood in Manila.

Then, the medical team at St. Luke’s Medical Center in the Philippines surprised Becca and Nick with the choice of several radiation treatment options to continue Georgia’s care.

“…We finally heard back from our radiologist,” Becca reported on her blog, The Helping Georgia Fund. “I had emailed her lots of questions on Monday regarding SRS and Proton Therapy. However, she replied saying that after looking at G’s scan, she now had concerns about SRS and so would not confuse us by trying to explain the technicalities of a procedure that G might not have!

“She failed to tell us what her concerns are and so has left Nick and I feeling extremely worried as we just don’t know what to think and are more confused than ever. She went on to explain that she has to consult with other pediatric radiologists which of course we want her to do but to give us nothing and just leave us hanging has left me with a knot in my stomach.

“So in some ways it is good that our lives are utter chaos at the moment as I have so many things to do with the house that I have just had to get on with that.

“I have emailed back requesting that she fill us in on her concerns. We are hoping to have G’s case summary by this evening so that we can start sending it off to experts.…Of course we have to wait and see what our radiologist says as to why she thinks SRS is no longer an option. Everything I have researched seemed to suggest it is often used in combination with chemo for Ewing’s sarcoma patients so now we are worrying that it might be the size or placement of Georgia’s tumor. But we can’t really second guess at this stage but just have to wait for her feedback!”

Less than two weeks after settling in to their new home, Becca reported on the latest discussion with Georgia’s radiologist: “During our first meeting, our radiologist suggested SRS which tends to be one high dose (no more than five); but now they are saying it needs to be fractionated doses probably over 31 sessions and… they have never done this [before].

“Nick and I had already reached the decision that we would have to move G for the next stage of her treatment but now we just have to work out what is the best form of radiotherapy for her and where to do it. Ewing’s Sarcoma is a very rare form of cancer and we really need experts in this field. Hopefully the doctors in London will be able to advise us once they have studied G’s case.”

Proton Therapy center opening soon in Michigan, USA

The doors will open soon to a « state of the art » cancer treatment center in Genesee County, one of only 35 such facilities in the world, and the only one in Michigan.

Construction is nearly complete at the McLaren Cancer Medical Center’s Proton Therapy Center on Beecher Road. « We are very excited to be able to provide this technology, » says McLaren oncologist Dr. Hesham Gayar, « as proton therapy focuses about at least 60% less radiation to the normal tissue than x-ray therapy. »

Current standard radiation treatments can indeed have side effects, which can be long term and/or potentially leading to secondary malignancy. Dr. Gayar calls the new center « a life saving tool and a quality of life saving tool. »

The McLaren Proton Therapy Center is the first and only proton therapy center in Michigan and is projected to serve patients statewide as well as those from Canada and surrounding states.



Part 2 – In the search for the best cancer therapy option, “knowledge is power”

With chemotherapy appearing to work well, last summer, Becca and Nick had mentally prepared for surgical removal of the remaining tumor on their little girl’s spine.

But the medical team at St. Luke’s Medical Center in the Philippines concluded surgery would be too risky for 3-year-old Georgia. The physicians presented Becca and Nick with several radiation treatment options from which to choose.

“All any parent wants is to make the right decision for their child,” Becca observed on her blog, The Helping Georgia Fund. “We don’t ever want to look back and have any regrets about our decisions, and so the only way we can do that is to find out as much as possible and keep asking questions. We know we can’t just take the first opinion that we are given. We have to ask for a second and third opinion. We have to get this right for little G.”

That August weekend, Becca wrote: “I spent all day yesterday on the computer doing research and Nick and I have just sent a long e-mail to our team of doctors with lots of questions and asking them for a case summary that we can send to international experts.

“…I have read a lot of good things and even listened on-line to a radio program about MD Anderson Cancer Center in Houston, Texas, USA. They offer Proton Therapy for pediatric patients with spinal Ewing’s sarcoma. I was able to read a survivor’s story about a little boy with Ewing’s sarcoma and everything in my gut tells me this is a great place for treatment.

“I have also read about the Rinecker Proton Therapy Center in Munich, Germany, which has been established since 2009. This center was the first to be set up in Europe that is ‘exclusively for the treatment of patients and is not a modified research facility.’ Both centers look amazing in what they have to offer.

“I have also been researching SRS ‘CyberKnife’ and where the best place to go for this is. It concerns us that St. Luke’s has never done this radiosurgery on a pediatric patient in the spinal area. If there are places out there that have done this and have lots of experience, surely that is where we should take Georgia?

“BUT then we have the risk of travelling with her whilst on chemo and if we can find somewhere here that has done SRS should we expose her to that risk?

“…I have read about the University of Pittsburg, Pennsylvania and they claim that ‘UPMC has one of the largest experiences in the world in treating spinal tumors with radiosurgery.’ They use ‘CyberKnife,’ which is an image-guided stereotactic radiosurgery (SRS.) I read that ‘the CyberKnife aims each beam independently, without a fixed isocenter.’ If the target moves, the process detects the change and corrects the beam pointing in near real-time.

“I like the sound of that, as even whilst sedated for P53 [gene therapy], G has been known to move. That would be lethal with radiation. So of course, this is one of the many questions that I have been asking our doctors: Is the technology for SRS the same wherever you have it done?

“I also read about the Mount Sinai Medical Center hospital in New York using the ‘Novalis Shaped Beam Surgery system’ on spinal cancer. They state that ‘Novalis is the most advanced Stereotactic Radiosurgery (SRS) technology available to treat cancer tumors in the spine.’ Again is this the same technology? Is this what every hospital uses for SRS?

“…Of course we also need to think about raising the funds. SRS is expensive but is not the same level of expense as Proton Therapy as this is done over a longer period of time.”

Proton therapy to treat breast cancer

Proton therapy is currently used to treat brain, spinal and prostate cancers, as well as many paediatric tumours. Another potentially significant application is the treatment of patients with breast cancer, as proton beam therapy may offer them the benefits of radiation without some of its serious side effects, which include heart disease.

Breast cancer patients who receive radiation therapy face higher risk of heart attacks and other heart-related problems in the long run. The risk is particularly pronounced for women who receive radiation treatment for their left breast because of its position right above the heart. This is where proton therapy shows a worthy advantage, as it precisely targets cancer cells without damaging surrounding healthy tissue.

About 230,000 women are diagnosed with breast cancer in the U.S. every year. Those who receive radiation therapy fare much better on average than patients who forgo radiation, as they have lower rates of cancer recurrence. However, they also face a higher risk of secondary complications.

Indeed, patients who receive radiation therapy in the left breast have a much higher chance of having constricted blood vessels in the front of the heart, as radiation oncologists treat the cancer by aiming the beam at an angle across the chest, inadvertently exposing parts of the lung and heart to radiation. These patients are consequently at much higher risk for heart attacks and/or heart muscle damage.

Proton therapy largely sidesteps this problem by offering depth control: “It goes in a certain distance and stops. So we can treat the chest wall as the patient receives less radiation dose and we can also avoid the heart and the lungs,” Dr. William Hartsell, medical director of the CDH Proton Center.


Part 1 – In the search for the best cancer therapy option,“knowledge is power”

April 8th can’t come soon enough for Becca and Nick. That’s the day PET scans and an MRI will be done to see if their 3-year-old daughter’s tumor is gone.

The scans will be conducted at St. Luke’s Medical Center in the Philippines where Georgia undergoes chemotherapy. They’ll be evaluated by her medical team in Manila and her proton therapy team some 1,600 miles away in Seoul, Korea, at the National Cancer Center’s Proton Therapy Center.

Diagnosed with an aggressive tumor on her lower spine just days after her birthday last June, Georgia received proton beam treatments at the National Cancer Center from November 19 through January 7.

Becca and Nick’s journey with Georgia and their son, AJ, has been so much more than the miles between Seoul and their Manila home. It’s been about finding — and at times fighting for — the best cancer treatment available for Georgia, “this little beautiful spark of life.”

And it was no easy path.

“As this process has taught us every step of the way, knowledge is power and we need help to overcome these challenges,” Becca observed on her blog, The Helping Georgia Fund. “We need to research all our options and we need to do it sooner rather than later.

“…All any parent wants is to make the right decision for their child. We don’t ever want to look back and have any regrets about our decisions and so the only way we can do that is to find out as much as possible, and keep asking questions. We know we can’t just take the first opinion that we are given. We have to ask for a second and third opinion. We have to get this right for little G.”

When they first diagnosed Georgia with a rare Ewing’s sarcoma, physicians at St. Luke’s Medical Center predicted a 20 percent chance of survival. At their recommendation, Becca and Nick moved quickly to get Georgia on an intense regimen of chemotherapy and experimental P53 gene therapy. This combination therapy would prove to be fairly successful at shrinking the sarcoma.

In August, about seven weeks into Georgia’s therapy, Becca and Nick were surprised to find a new person added to her medical team: a radiation oncologist. Up until then, surgical removal of Georgia’s spinal tumor was likely to occur in early October, following completion of a sixth round of chemotherapy. The medical team no longer supported surgery. The tumor was just too close to the spine.

“Our heads are now spinning,” Becca wrote on her blog that day. “It was explained to us that if the tumor has shrunk and is small enough the best option is to do SRS, which is Stereotactic Radiosurgery. This is like surgery but without a knife; it is known as ‘cyberknife.’ A laser beam is used via a CT scan from outside of the body and it puts a high dose of radiation into the tumor. It is an effective and fairly precise way to treat spinal tumors if they are relatively compact and not too large.

“So here is the problem: What if her tumor is too big to treat using SRS? We don’t want to do traditional radiation as that goes through the body killing anything in its path. We have to find the most precise method of radiation to treat G’s tumor with the minimum damage to the surrounding vital organs.

“I have been trying to research Proton Therapy (not easy unless G decides to have a sleep). This is also an external beam that delivers a high dose to kill the cancerous tissue without damaging the surrounding healthy tissues. The difference from SRS is that it can be given over a longer period of time in small doses and is used to treat bigger tumors.

“The problem is that there are only a few countries that offer Proton Therapy and that does not include the Philippines or the UK [where Becca and Nick’s families live]. If you have insurance or are an NHS patient, Proton Therapy is covered, but of course we have neither. We have not researched the cost yet but a figure of 120,000 pounds was mentioned and that is the treatment only. You also have the cost of travel and staying in the country for six weeks.

“The other problem is that we won’t know what size the tumor is until October and then we have to act fast and of course have a plan in place.

“The radiologist also mentioned today that she has used SRS for brain tumors and that the treatment has been used here at St. Luke’s for two years. But she has not used SRS on a spinal tumor on a pediatric patient before; Georgia will be her first time.

“Everything that I am reading about centers that offer Proton Therapy, these procedures have been done many times before.”

Prostate cancer patients happy with proton therapy

An exhaustive study surveying prostate cancer patients treated with proton therapy determined high overall satisfaction with the treatment. The report released last week at the National Proton conference in Washington, D.C., included 2.000 patients treated for prostate cancer with proton therapy from 1991 to 2010.

99% of surveyed men said they made the best treatment decision when they chose proton therapy. “The data represent the kind of patient-based outcomes analysis that is highly valued by clinicians and is needed to inform decisions about treatment options,” said Leonard Arzt, executive director of the National Association for Proton Therapy (NAPT). “Meaningful data like this have been missing in prior research on proton therapy. The study is highly unusual in that it includes results from approximately one-fifth of all men receiving proton therapy for their cancer treatment.”

Proton therapy, which delivers high doses of radiation to a precisely targeted area, is often used for treating prostate cancer because it has the ability to spare surrounding healthy tissues and minimize side effects like incontinence and impotence. Medicare even reimburses proton therapy for prostate cancer treatment.

92% of the respondents considered that physical health or emotional problems did not interfere (or very little) with their social activities, and that their urinary, bowel, and hormonal Health Related Quality of Life (HRQOL) measures compared to healthy individuals.

The Brotherhood of the Balloon, a group of about 6,400 men who received proton therapy, conducted the survey. They examined satisfaction with care, quality of life, emotional and physical health limitations; and urinary, sexual, bladder, and bowel functioning.