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LUNGevityKristin

UPDATED 6/15/20: COVID-19 Information

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Thank you, Kristin.

I read the transcript (vs view the video) and this was helpful. As one of those patients with another small, slow-growing GG tumor, I was told radiation is likely in my future but I need to wait 12 months (per my surgical oncologist) due to COVID-19. My Dr. realized that might be a difficult thing to accept, but I have put my trust in him. I am grateful I am able to do this safely (hopefully... time will tell). I can only imagine the stress that others might be experiencing right now who are actively undergoing treatment. Dr. Donington sounds like a very caring provider. Her statements were clear and understandable. It was helpful to hear her perspective and realize that this is hard for our cancer providers as well - they want to be able to care for us in the most expedient and helpful ways possible. COVID-19 has presented them with challenges in delivering that care to us - and they are doing what they can to protect us not only from cancer but this new virus as well.

You / Lungevity have been absolutely stellar in providing us with information. Thank you. Really reminds me I am not alone in this or my fears!

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Colleen, is it possible to do radiation at a cancer center?  I know there are some community members who are still receiving treatment with much stricter than normal security measures in place.

I'm so glad to hear you have found this information useful! Everyone at LUNGevity has been working hard to keep our community informed as best as possible. :)

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On 4/17/2020 at 1:26 PM, LUNGevityKristin said:

Colleen, is it possible to do radiation at a cancer center?  I know there are some community members who are still receiving treatment with much stricter than normal security measures in place.

I'm so glad to hear you have found this information useful! Everyone at LUNGevity has been working hard to keep our community informed as best as possible. :)

Thanks Kristin... There is a cancer center here in my town, but I'm a little reluctant to seek treatment here. I may not have a choice though.

I had my 2018 surgery in Seattle (about 2 hrs away) and my surgeon has been following me post-op. He is the director of the lung cancer program at the center / hospital where I had my lobectomy; I feel confident in his experience. He was the first to review my most recent scan and his advice was to wait 12 months to see what the next scan shows. He discussed radiation as the next step - if that's what he feels the scan indicates.

The pulmonology clinic in my town then looked at the scan and had one of their doctors call to discuss it with me. He was encouraging me to get a biopsy NOW - this was not something my surgeon talked about at all. I plan on sending a message to my surgeon's office re: this. I've been reluctant to do so simply because I know he and his clinic / the hospital have been heavily involved in treating COVID-19 patients.  The pulmonology clinic, in my experience, has often pushed for procedures that my surgeon has not agreed with. i.e. They pushed for me to have a  biopsy before my lobectomy, which was not advised by my surgeon as the tumor was in a difficult place to reach - he felt a biopsy wasn't necessary and would be just as dangerous as surgery itself - and the outcome (whether positive or negative) would not have affected the decision to go forward with the lobectomy anyway. (How's that for a run on sentence?!)

In any case... I am a bit chicken right now to do anything. Some of it is denial in not wanting to acknowlede another tumor. Some of it is just plain ol' fear of COVID-19. If this is a slow growing, small tumor, I think I'd rather take my chances and wait /ride this COVID virus out a bit more before considering a biopsy. Twelve months seems quite long - and I am concerned that this virus will re-emerge next winter, when I'd be nearing the 12 month mark to get another CT with my surgeon, and cause problems once again.

I also need to do some research and make sure our local clinic has the equipment and skill in providing the radiation treatment I may require. I don't know what the repuation is for the radiologists here. The hospital, unfortunately, does not have the best rep.  Thank you, Kristin.

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Hi Colleen

My heart broke reading this post.  I think we’re all in a similar position when making choices COVID vs Cancer.  We shouldn’t have to be in this position.  Listen to your instinct.  The local yocal centers are in my experience, revenue driven with an inability to recruit the best specialists (which are typically found in the major academic research centers). 
 

My scans are due at the end of the month and I went through a brief decision making process before confirming my scan:

1. The COVID virus has been lingering around KC since early December (based on some of the new antibody tests)

2. I didn’t contract the COVID during this time because I was always a germ-a-phobe, even more with this cancer.  
 

3. The hospital is taking huge precautions by having strict isolation protocols.

4. There are five people in my church that have the COVID, two of them high risk, none of them were hospitalized.

5. I know two other ALK Positive patients who also had the virus with mild symptoms (for real!)

6. I have my own protective garb (N95) and medical grade gloves from my chemo days  

7. Cancer worries me more than COVID.  My immune system is in good shape according to the lab values   

8. I don’t think COVID is going away soon. 

9. Better to seek treatment now in case there is another surge and things get worse  

10.  I believe the COVID odds are in my favor, there are things I am doing to be as proactive as possible, cancer is a bigger problem for me at Stage IV. I would just kick myself for putting off a scan if there were any clinical changes that were not detected early.

That’s my Letterman Ten.   Maybe it’s helpful perspective.  
 

Have you considered asking the surgeon to refer you to a thoracic oncologist?  The thoracic oncologist is an expert in lung cancer who may have a different perspective.  I’m wondering if there could be a virtual appointment so you don’t have to make the two hour trip?  Worth a shot?  
 

@BridgetO gave some very practical advice in another post. You make the best decision you have with the information you got and don’t look back. 

Keep us posted.  I will pray for you! 
Michelle

 

 

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Michelle,

Thank you very much!  Your "Letterman Ten" is an incredibly helpful perspective!  Gosh, I just love you! :-) You always have such beneficial, educated information to offer with a side of humor!

I have long suspected that the "local yokel centers" are revenue driven.  I know they were greatly disappointed when I chose to have my surgery in Seattle vs here with the one thoracic surgeon (past retirement age) available. It was a little disheartening when it finally dawned on me that while they likely cared about me as a patient, they were also trying very hard to sell me getting my treatment locally. I can understand this, but it doesn't mean I have to agree with it. It must be very difficult for medical clinics and hospitals to compete for patients when facilities such as the Univ of WA Medical Center, Fred Hutch and Seattle Cancer Care Alliance are within a 2 hour drive.

RE: asking my surgeon to refer me to a thoracic oncologist... My understanding is that he IS a thoracic oncologist. I was very confused about this following my surgery (I kept asking here on this site where I was supposed to get / find an oncologist).  He is quite well known for treating mesothelioma on the West Coast. I just checked his business card and it lists "Surgical Director Lung Cancer Program Thoracic Surgery Oncology".  When we spoke in March to review the cat scan, he said it had grown but it was still too small for him to even find if he tried to. He discussed that stereo-tactic radiation would likely be the route to go and mentioned something about he would place markers for the radiologist (Tom Galli gave me some info re: this; thank you again Tom!).  My surgeon said he would consult with one of his radiologists in the future regarding this.

But... in any case... your message and list of ten items was very helpful. I need to write up my own list, but I think your #9 made me take pause:  It may very well be better to seek treatment now in case of a surge. I don't think COVID-19 will be going away soon any time either. I tend to be a bit of a germ-a-phobe as well, but this experience has heightened that trait. Until there is a vaccine - and even when there is one - I think I will always feel concern.

On another note:  "I know two other ALK Positive patients who also had the virus with mild symptoms (for real!)"... THAT was really uplifting news! Very happy for them and so encouraging for the rest of us.  I will really be interested in getting an antibody test if possible in the future to see the results. I know they don't know at this point how much immunity one might have if anti-bodies are present, but it would be good to know if one had been exposed and had minor to no symptoms!

Thanks for your response.

 

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CollenRae,

Here is the way I look at things. You had lung cancer: "a lobectomy, no chemo or radiation about 17 months ago". Your cancer likely staged at 1a or 1b and thus no post surgical chemo. But you have another suspicious nodule, and lung cancer, even at an early stage treated curatively with surgery, has about a 33% percent chance of recurrence. COVID is certainly a risk and I don't want to minimize it, but lung cancer is a mortal risk.

As a soldier, we were drilled to always engage the most dangerous enemy first. In my treatment days, despite my many complications, that was lung cancer. I would go where ever I could find competent treatment to identify, classify and eliminate this suspicious nodule soonest. 

A point of clarification on reading Michelle's very cogent advice, she used the words thoracic oncologist and your response implied surgeon. To simplify, think of the lung cancer treatment team as thoracic surgeon, medical oncologist and radiation oncologist. If I were in your situation, I'd be seeing a medical oncologist (knowing that you've already consulted a radiation oncologist on SBRT). My GP is fond of saying: "see a surgeon, you'll get surgery as an answer." I believe the answer you seek is: is this suspicious nodule lung cancer.

Stay the course.

Tom

 

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Thank you, Tom.  I can certainly see logic behind your message (but can't say I feel any better... !)

I'm still really torn as I don't know where to find a "medical oncologist" where I live. This has been a hurdle for me since I entered this world of lung cancer. I've googled for someone in this area and I've asked PCP's - but have gotten no-where. I had some names and - unbelievably - they are no longer practicing. Or, I can only find hematology oncologists. It's been frustrating. I've asked the pulmonology clinic but they have not referred me to a medical oncologist. They keep telling me they have a tumor board that will review my scans and make recommendations. Right now, I would really like to have a doctor that I can lean on, ask questions of and who can steer me in the right direction.

I did consult a radiation oncologist before my lobectomy in 2018 (as that is what our local pulomonology clinic was recommending - either surgery or radiation). That radiologist said he would not do anything until he knew for sure that the tumor in question was confirmed to be cancer. The surgeon that I saw here said the same thing.  I had a PET scan which lit up. Then the pulmonology clinic recommended the biopsy - which just posed too many risks and convinced me to just move forward with the lobectomy. I discussed it with two different surgeons in Seattle and they both said the biopsy would be a waste and unnecessary. That is when  I, like many others, went into the lobectomy surgery not knowing if it was truly cancer, but had been advised that it was highly likely. That was a risk I was willing to take, and I am glad I did it

I liked what you said:  "In my treatment days, despite my many complications, that was lung cancer. I would go where ever I could find competent treatment to identify, classify and eliminate this suspicious nodule soonest. " My problem is I don't have many places I can go right now to address this, so I have to wait. For a bit. I can't travel to another city. I can't spend the night anywhere. I will, for now, see if I can schedule a tele-med appointment with someone; I'm just really reluctant to search locally. Traveling to Seattle is not easy for me to do and I am concerned that it will be months before I can see anyone there. If radiation is recommended,  I have to be able to drive myself. Can one receive radiation treatments and drive home alone? Are you allowed to drive yourself after radiation? 

When I spoke with my surgeon he did not suggest any further surgery to treat this; he said radiation would be the course to take, so I did not get the impression that surgery is his answer by any means. He even said he thought they should be able to provide radiation here in our area, but he still asked me to trust him and hold off. He wanted to see what the next scan would show before moving forward. I think his reasons for asking me to wait were two fold: 1) Due to the risk and unavailability for any elective procedures due to COVID; and 2) He's been following this tumor for almost two years now and he was (at least initially) not convinced that it is cancer.

I'm rambling here, and I have to admit I'm feeling a bit depressed now about this. You have an enormous amount of "drive to thrive", Tom. It is so inspiring. I'm just a bit worn out from being a single parent at the moment with an adult disabled son - oh, and this is completely unrelated to cancer - but I have been in telephonic court hearings with my son's father over child support, which has been very stressful. My biggest fear since receiving a cancer diagnosis has been what will happen to my son? He has not seen his Dad in seven years; they have spent less than 30 days together in the past decade. We've had two hearings since February regarding this, with one more - hopefully the last - this coming week. I had my CT scan in mid-March, so I've had to put my plans to address this cancer on the back burner for a short bit. Once the hearing / child support issue is finished I will be able to focus on this next challenge, but I am not looking forward to it. I know I should be a fighter right now - I'm in a good position with this being a small, single tumor at present. I'd like to keep it that way. And yes, my dx after the lobectomy was staged 1a, adenocarcinoma. I knew the recurrence rate was there :-(

I think it's time to take a walk...! Thanks to all for your information and suggestions... It IS appreciated!

 

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CollenRae,

Two points: the medical oncology discipline I’m familiar with are all titled Hematologist and Oncologist. Second, I understand the complexity of your dynamic with your son, court case, and the rest. COVID for sure adds extra drama. 

Only you can determine your priorities and path. My thoughts are only suggestive. 

Stay the course. 

Tom

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Hi Colleen,

You’re life is upside down right now, one issue at a time. I don’t see how you wouldn’t feel depressed with such a full plate.   
 

 Tom was correct in the clarification, the oncologist serves as the team captain after surgery.  I’m very surprised the surgeon didn’t refer you to one.  That’s where I would start. 
 

As for the radiation and the drive, here’s how that would be handled here in KS within the rural community, the KU doc designs a treatment plan (chemo, immunotherapy or radiation) that is administered by a local doctor.  The KU doc makes all the arrangements to find a local doc.  It’s like a hub and spoke type model.  KU is the main cancer center in the tri-state area and they work with non KU doctors in the community. 

If the surgeon is not very helpful the Seattle Cancer Center will have a nurse navigator, their job is to help get you to the right oncologist. 
 

In my case I was initially diagnosed at a very reputable hospital however the pulmonologist had a hunch that my lung cancer was rare since I was 51 and a never smoker.  He understood that I needed something more than their health system could offer but didn’t have any idea who to refer me to.  He contacted the KU nurse navigator and got me referred bingo to the right doctor.  I didn’t have to do any of the phone work at all.  
 

It should be the surgeon who does the heavy lifting here to find the medical oncologist.   You can always call the GO2FOUNDATION for a recommendation as well.  They’re based in San Fran and very well versed in the west coast health care operations. 
 

Brighter days are coming.  A big hug to you!

Michelle
 

 

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Colleen,

I didn’t answer your question on driving post radiation. I had both fractional conventional radiation and precision SBRT. I was fullly capable of driving after SBRT. It was only 3 days in a row, and 15 minutes per session. 

The conventional fractional radiation was an entirely different experience. I had 30 M-F sessions over the course of 6 weeks. The first three weeks, driving alone was no problem. The last three was a nightmare and I could hardly walk from the car to the clinic. 

Stay the course. 

Tom

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Hi Colleen, Here's a semi-relevant answer to one of your questions. I didn't have radiation for my lung cancer, but I did have it for two other unrelated primary cancers, each time for about 30 sessions (can't remember exactly). One was for breast cancer. The other was for a gynecological cancer and for that one my entire pelvic and abdominal area was radiated. For both courses of radiation I drove myself to and from treatment. 

All the best, from Bridget O

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Hi Colleen,

First, you can try the Lung Cancer HELPLine for local resources: https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline

My mom had radiation for breast cancer last summer and drove herself to all of the appointments for a little over a month.  Her fatigue hit after her treatments were finished.  Hope this helps!

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Can't thank all of you enough for your responses, thoughts and shared experiences... This has all been incredibly helpful!  I did not get the best sleep last night, but reading all of these messages has really helped me focus and has given me guidance as to how to proceed - or at least what direction I might head in! So thank you, one and all! :-)

Michelle - Thank you for spelling it out so clearly to me as to how your area would handle this. After reading this, I am surprised my surgeon (or at least his staff) did not take steps in assisting with this. He has never consulted with any other provider, so I really haven't felt like there has been a "team" I can turn to. This helps a lot.

Tom, Bridget & Kristin... Thanks to each of you re: if I can drive myself after radiation treatments. I'm so glad that I will likely be able to drive myself. Whew! Sharing your experiences helps others, like me, so very much. This is a huge relief; you have no idea!

That has been a big concern, not having anyone to lean on (okay, now I've got Bill Withers's song in my head...) I have tried to encourage my son to drive but realize he knows better than anyone if he is able to handle that responsibility. It's probably better for all of us that he isn't on the road!  I really need to make some friends I can turn to... We had just moved here to our town - we knew no-one in this area - and four months later I had my first lung CT and was told I likely had cancer. I was very reluctant to make friends at the time, fearing how people would react if they knew I had cancer. It just didn't seem like an ideal time to forge any friendships; I didn't want to appear needy to anyone! :-( So I have been very grateful for all of you here.

Kristin... I hope your mother is doing well. She must be very proud of you! Please tell her that we find your assistance invaluable!

Again, thanks to all of you for your explanations, suggestions and for educating me. I am amazed at how much you have all learned and coped with throughout this journey. It might sound a bit hokey, but you really are my inspiration and my heroes.

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UPDATE: 4/20: 

bit.ly/33LE0zp

In this week’s update, we address the following important topics:

Role of telehealth in the era of COVID-19

What is telehealth?

How is the use of telehealth changing during the COVID-19 pandemic?

What are some of the barriers to broad uptake of telehealth during the current crisis?

How do I know if I am eligible to obtain telehealth services?

Impact of COVID-19 on lung cancer clinical trials

How is the FDA allowing the use of telehealth for lung cancer clinical trials?

If a patient is receiving their drug through a pharmacy at the clinical trial site, can they now receive the drug through home delivery without having to change the protocol?

If a patient is receiving a drug given through infusion, can they now receive the clinical trial treatment through home infusion?

93563604_10157907247427860_7235148881451810816_o.png

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If you're wondering how different professional societies and organizations are addressing lung cancer screening and treatment during the COVID-19 pandemic, you'll find answers in this week’s update from lung cancer advocacy organizations -> bit.ly/33LE0zp

update 4-27.png

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LUNGevity spoke with well-known Washington strategist Monica Popp to bring you the latest update on policy changes as a result of COVID-19.

You can see the interview here as she explains the political climate and what’s coming, along with actions individuals can take to keep lung cancer a priority -> https://bit.ly/3c0D1yR

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Information overload is emerging as one of the major COVID-19 challenges for cancer patients. In this week’s update, leading lung cancer advocacy organizations provide important developments about the virus coming out of #AACR, including a framework for evaluating new information. https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/weekly-updates-on-coronavirus-covid-19-from-lung

may 4th.png

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Join us for a #COVID19ExpertConversation with Oncology Nurse Navigator Cheryl Bellomo as she dives deep into the changing world for cancer patients. Hear her advice on navigating #COVID19 for #lungcancer patients and their loved ones. Watch the full interview here as she answers the questions that are on the minds of our community.

https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/conversations-with-healthcare-experts/covid-19-9?fbclid=IwAR1xKZYR91FzlSF1X3QafiDPiJv475SuY9TyPbMIqjIQvXYtDVedYH_MNI8

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UPDATE 6/15:

States are in different phases of reopening and shelter-in-place restrictions and lockdown have been eased in almost every state in the USA. With restrictions being lifted despite the upsurge in new cases, this week’s update answers a critical question: Is it safe to return to routine activities for members of the lung cancer community?

https://lungevity.org/for-patients-caregivers/covid-19-and-lung-cancer/weekly-updates-on-coronavirus-covid-19-from-lung

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UPDATE 6/30: With many US states seeing a rapid escalation in COVID-19 cases and hospitalizations, we answer: How can you protect yourself? Get important updates on antibody response & immunity, COVID-19 outcomes for cancer patients, and guidance on public health precautions from this bi-weekly joint statement.

http://ow.ly/gElQ50Am8QB

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