How to communicate with a silent oncologist

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This topic contains 28 replies, has 10 voices, and was last updated by  kimo 1 year, 7 months ago.

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December 22, 2012 at 9:10 am  #1251707    

kimo

I have seen my oncologist for more than three years. She seems to care deeply about my well-being, she is never hasty, and she is keenly observant and exceptionally well trained and has many other fine qualities. But I am frustrated that she says very little during my appointments. I’ve had appointments that were scheduled to last one hour, and they last less than ten minutes! She routinely runs 30 minutes ahead of schedule by 11 am, so I think she is equally brief with other patients.

If I ask a question, she will respond in four words. If I press for details, she will respond with two words. If I raise a topic based on something I read in a medical journal (e.g., the possibility that not all tumors grow at a consistently exponential rate), she seems to never be interested in the premise of the article and shuts down the discussion immediately. She never tells me her findings after doing a physical exam except once when she exclaimed, “Your lungs sound better!” She now refuses to discuss my prognosis (in the past, she was certain I would be dead over a year ago). I really do need to know where I stand because I am on medical leave and soon must decide whether to quit my job.

I have read that an unusually high proportion of specialist attendings are somewhat autistic, and that might explain her robotic manner and inability to pick up on social cues, but of course I have no way of knowing. I have also read that some doctors withdraw emotionally to protect themselves when a patient is doing poorly (as I am, depending on your perspective). She was born and raised in another country, and there are possibly language issues, although she is quite fluent in basic English (I avoid American colloquial phrases, just in case they are difficult for her).

If anyone has suggestions for how to have more fruitful discussions, I would be happy to hear them. At this point, I wonder why I even bother going in every month, other than to get my lab work done.

December 22, 2012 at 10:12 am  #1251709    

double trouble

Kimo, I’m wondering if you have a good primary physician. My primary is wonderful. She’s easy to talk to and will call my other doctors (specialists) regularly to make sure she understands where things are with me. Then we can have very frank discussions about everything, including prognosis.

If your onc. is a competent doctor, maybe what you need is a “middle man” or a moderator. If you’ve been seeing her for more than 31/2 years it seems unlikely that she will change her style.

I hope you get it worked out. It is very important for me to be able to really talk things through, so I understand why this is problematic. Good luck.

Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

December 22, 2012 at 11:38 am  #1251711    

certain spring

I agree with Debra that the primary physician could be a useful way in – I have only recently learned about my oncologist’s treatment protocols with Tarceva, and this is because I asked the GP to call and find out.
My oncologist is a friendly and compassionate person and, unlike yours, she is very easy to deal with socially. Where I can relate to your situation is that she doesn’t want to discuss the future or what we might do when the Tarceva stops working. And she certainly isn’t interested in my opinions or any contributions I might hope to share.
I think the answer is probably “Get another oncologist” – for me as well as for you. What gave me pause was my visit to a specialist hospital for a second opinion. The doctor we waited two hours to see dispatched my husband and myself in ten minutes, ruling out various treatment options and showing no interest in my slightly peculiar histology, let alone in keeping me alive. He clearly had the knowledge I wanted, but I wasn’t sure I could cope with someone so dismissive. So I went with the Hilaire Belloc rhyme, “Always keep a hold of nurse/For fear of finding something worse”.
I suppose the commonsense answer is that oncologists, like people, have a range of personalities – that’s evident from the doctors who contribute to this site. I, like you, wish I could find one with whom I could communicate better. My advice would be to shop around for someone who has your oncologist’s good qualities but who possesses better communication skills (my advice to myself is the same!)


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

December 22, 2012 at 2:57 pm  #1251716    

catdander forum moderator

certain spring, Inspire yourself! as you inspire others.


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 2/14.

December 22, 2012 at 5:39 pm  #1251722    

Dr West

I’m afraid that this sounds to me like a personal characteristic that is unlikely to be something you can change, so I suspect that if you want to have these conversations, your most fruitful approach will be to find someone else to have them with, whether a primary doctor or, more likely, another specialist for a second opinion and potentially occasional follow-up visits as needed.

To be perfectly frank, I think most primary physicians are not knowledgeable enough about the specific issues to offer the kind of guidance many people here are seeking. I don’t mean this as slanderous, because I’m not a qualified cardiologist or gastroenterologist or manager of diabetes, and there is just too much medical information for any one doctor to have a good level of competence about a broad range…this isn’t 1890, when all medical knowledge could be summarized in a single leather-bound volume. I suspect that many and probably most people think that their or a typical doctor knows far more about everything in medicine than they/we actually do. Most general practitioners/internists I know of are more than happy to have no role in directing the cancer-related issues, don’t feel qualified to do so, and expect the oncologist to serve that role nearly completely. Moreover, I think that’s appropriate for their level of cancer knowledge.

Again, I don’t say that as a terrible criticism, since I think those of us in medicine know that specialists are best equipped to handle these complex issues, and few of us are extremely competent outside of our range of regular practice over many years. But I think it’s a mistake to expect a general physician to be adept at answering any but the most general questions about expectations or management of a cancer, and I think most are out of their depth when they try.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

December 23, 2012 at 4:29 am  #1251735    

certain spring

Hmm, but knowledge is not entirely the point. It is a question of communication within the caste. My experience is that doctors find it easier to communicate with other doctors, and are more forthcoming with other doctors. My GP can ask questions and get answers that I couldn’t get. She doesn’t pretend to be a lung cancer expert, but sees her role as a coordinating one – ie knocking people’s heads together and making them talk to one another. In the NHS, she is also the person who is ultimately commissioning the care, so that gives her more weight.
Going back to kimo’s original question, I have encountered three senior oncologists since dx. Two out of three have been dismissive and distant. I feel the problem may lie in medical school and the attitudes that incubate there. I wish GRACE could start a matching system, along the lines of a dating website, for doctors and their patients!


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

December 23, 2012 at 6:10 am  #1251741    

catdander forum moderator

:idea:


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 2/14.

December 23, 2012 at 6:00 pm  #1251770    

Dr West

Well, that point is very well taken. I appreciate that it’s not merely knowledge but connection. I just mean that when people are seeking insight about what to expect or what the options on, they really need both the information and effective, compassionate communication about it, so even someone who connects well may not serve well in that capacity if they can’t answer a patient’s questions.

I don’t see GRACE becoming “onc-harmony.com”, but I completely agree that while one oncologist might resonate well with someone, another patient might not be a great fit. This is why I really don’t buy into the concept of a doc or institution that is “the best”: some people want lots of evidence and a careful discussion of options that the patient can choose among, while other patients may vastly prefer to be directed on how to proceed. One patient may prefer the confidence they get from receiving care at a large institution, while others may be put off by being treated at a very large center and far prefer a more intimate environment. I wonder if doctor rating sites will really catch on. Right now, they still tend to feature just a very tiny minority of people’s views that tend to be either those extremely happy or extremely unhappy with the doctor, and therefore not very representative of the broader experience in that person’s clinic.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

December 23, 2012 at 6:15 pm  #1251774    

aunttootsie001

I think I’d have to scope out a replacement Medical Oncologist if that was possible. Being comfortable with your Oncologist is very important to me! That added Stress isn’t worth it. I was afraid when my first Oncologist retired 7 months after I started with him. He was so nice and personable and gave awesome descriptions of everything we were doing! He made me so comfortable and didn’t think I could luck out twice. But his replacement was a woman and she is as great as he was! Could not tolerate your Dr. Good luck and keep us posted!


DX June 2011, Non smoker. Lobectomy August. 2011. Two TX Carbo/Taxol. 31 TX Radiation 2012. Break no treatment 8mo. Malignant Pleural Effusion discovered Oct. 2012. Xalkori started Nov. 2012. Pleurodisis done April 2013. Last CT still NED.

December 24, 2012 at 1:37 am  #1251787    

certain spring

Definitely not ratings. More something along the lines of: “Polite and generally grateful patient (Stage IV) seeks thoughtful lung cancer specialist with research interests in molecular testing and/or targeted therapies. Must be willing to liaise with cardiothoracic team at another institution. Capacity to tolerate well-informed patients will be an advantage.”


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

January 3, 2013 at 7:00 pm  #1252179    

heartspy

Certain Spring – hahahahaha…nice ad! Sincerely! Thanks for the smile.


My Beloved,43 year old husband passed away on 4/17/13 from NSCLC w/ EGFR+ mutation. My heart hurts with grief, but remains full of gratitude to GRACE .

January 4, 2013 at 12:48 pm  #1252207    

kimo

Thanks, everyone, for sharing your thoughts on my dilemma.

I do indeed have a very empathetic primary care provider who has shown herself to be a vigorous advocate for me even though I’ve actually seen her only once. That’s a great idea to use her as a go-between with my oncologist. A friend of mine who is a doctor (but I never ask him about my case) says it bothers him how often doctors will say, “No one can know” when a patient asks for a prognosis but will nearly always freely give their opinion to a fellow doctor (“That guy can’t possibly last more than three months”).

I don’t ask even my oncologist questions specific to my rare cancer, and I wouldn’t dream of asking my PCP. There just isn’t much known about it. I ask my oncologist only general questions about the nature of tumor mutation and progression and the like. Right now I’m trying to figure out what is the bare minimum of communication I need from my oncologist. I don’t need hand holding and I don’t really need her thoughts on technical issues in oncology (although I would value her opinion), but I think I at least want her to tell me what she finds when she listens to my lungs. The last time I saw her, she dispatched me for an immediate x-ray. I happened to ask the radiology tech if a pleural effusion could be seen on an x-ray, and she said, “Oh yes. That’s why we’re doing these extra views” (lateral decubitus). So I conclude that my doctor heard something in my lungs that raised this possibility, but did not share that with me.

I still have hope that she can overcome her tendency to say almost nothing because on one occasion, two years ago, she strode into the exam room and immediately declared, “You want to know exactly what I think.” I said, “Yes!” And she laid out her thoughts in detail. I think she must have braced herself to do this. It was my best appointment with her ever, and I hoped it would set a new tone. But, ever since, she has been as quiet as ever.

January 4, 2013 at 9:41 pm  #1252216    

Dr West

Interesting. At least that one episode shows she’s capable of communicating effectively, as you’d hope for. Perhaps a little more direct encouragement/cajoling could bring her around again, at least intermittently. You might get a few more of those very productive appointments.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

January 15, 2013 at 5:12 pm  #1252644    

kimo

Well, I saw my silent oncologist today and employed a new if slightly deceptive strategy to squeeze some information out of her.

Right now, I am on leave from my job. I said to my doctor, “My employer wants to know if at some point I can go back to work and put in at least a solid year. My sense is that that is not realistic. What do you think?” And even though she won’t tell “me” my prognosis, she apparently was willing to tell my employer something through me. She shook her head gravely and said, “No.” Just to confirm, I said, “So I’ll tell them, ‘Thanks for waiting for me, but I won’t be back,’” and she nodded. Well, it’s not a full-fledged prognosis, but it’s more than she has said in a year. It gives me at least a little bit of information to plan around, which is what I want. It’s been driving me crazy to not know whether I’ll be returning to my job.

kimo

January 15, 2013 at 5:36 pm  #1252645    

double trouble

I’m sorry Kimo. Even though we already know, it’s hard to hear.
Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

January 15, 2013 at 8:58 pm  #1252662    

Dr West

I’m sorry for the news, and I’m also sorry that you have to go through maneuvers to extract this kind of insight. It’s a fair question to ask directly and expect a meaningful discussion.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

January 16, 2013 at 4:54 am  #1252669    

certain spring

kimo, I wonder how you feel about this? We are assuming it is upsetting but in a way – as you say – it is good to be able to plan, especially if you have things you want to do outside of work. And you did at least flush something out of her.
It’s worth bearing in mind that most doctors try to help their patients with bureaucracy and the outside world. So my GP signed me off as having less than six months to live, which felt fairly appalling until my brother pointed out that this was a worst-case scenario that would entitle me to various benefits (the eligibility criteria being a life expectancy of six months or less). I wonder if your oncologist has her own ideas about helping you avoid unnecessary stress etc?
For what it’s worth, I gave up the work I was doing on dx and then, to my astonishment, slowly came back to some of it.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

January 16, 2013 at 6:39 am  #1252673    

catdander forum moderator

I think that’s a very reasonable thought cs. It’s very much the same way in the US with insurance companies and federal social security disability.

Your story about returning to work after such close calls earlier on should be heard by everyone dx. I know you, your family, and your Grace family couldn’t be happier that you’re doing so well…plus those who benefit from your work :)


My husband, 53 @ dx of stage 3 squam nsclc R. pancoast tumor 8/09 caused destruction of 3 ribs, touching brachial plexus. 2 core and 1 VATS undx biopsies. Open thoracotomy for 1 positive biopsy (unresectable). Chemorads, 9/09. MRI by pancoast specialty surgeon 11/09 spine met found, stage IV, Rad to spine, Chemo changed from cis/etop to navelbine/carbo. 6 cycles total. Tarceva 2/10-11/10. 3cm tumor L lung, biopsy undx w/collapsed lung. Gemzar, 12/10 through 7/12. NED 3/12, stop tx 7/12. Remains NED as of 2/14.

January 16, 2013 at 7:09 am  #1252674    

double trouble

My onc is very straight with me. He said today that if we assumed that none of the available therapies were going to work, within 6 months to a year the cancer would take me down. That’s shorter than the 18-24 months I heard in September.

But I remain optimistic. I have Xalkori now, Alimta for later, and second generation ALK inhibitors might be available by the time I need one.

So with treatment, that 6 months worst case scenario can turn into years. Still, I keep in mind that I could step out in front of a bus or have a heart attack or an airplane could fall out of the sky and land on my house too.

I’ve been an advocate of planning from the beginning. I have even reduced the size of my household to the very bare minimum (I could live in a studio apartment) making sure my family got the things they wanted ahead of time so there will be nothing to argue over later. I’ve already done my Hospice paperwork, so when the time comes, we’re all set, and I’m making monthly payments on my cremation, and let them know exactly how I want things done.

I feel more free to enjoy things day to day with this stuff out of the way. The only thing I haven’t been able to do is find a new home for my cat. I have to do it… I don’t want him to end up in a shelter. But I’m pretty attached to him.

Anyway, knowing is a shock, but with knowing comes a sense of urgency and a compulsion to get the planning done, after which there is a freedom that we deserve. To be able to not stress over those issues is wonderful, liberating. At least for me.

Debra


09/10 CT Bil. GGO’s 12/10 L L VATS Segment Adeno/BAC Kras+ 1st Primary Stage Ib
05/11 CT L Stable RU 1.3 cm nodule, 1r & 2r LN 08/11 PET/CT L Stable, mild uptake in R nodule, LN
09/11 EBUS N1, N2 LN Adeno+ 2nd Primary Stage IIIb
10/11 Start chemorad Cisplatin 11/11 Stop chemorad 4 cis/38Gy blood counts
12/11 PET/CT FDG neg 03/12 PET/CT Stable R nodule R hilar SUV 3.4 06/12 Growth R hilar SUV 9.5
07/12 Mayo recommends thoracotomy pneumonectomy EBUS R Hilar Adeno+
08/15/12 Brain MRI Normal 2nd Opinion Duke recommends VATS pneumonectomy
09/12 PET/CT hilar growth, new R 2.2 SUV 1.5 by 2 cm Hilar LN Kras+
Duke Mediastinoscopy R Lung Unresectable, Bronchoscopy #7 LN Adeno+ ALK+
10/12 HRCT 4 RUL nodules (3new) enlarging R Hilar
12/12 PET/CT 12/19 Start Xalkori 02/13 Decreased FDG R Hilar. RUL collapsed 05/13 Stop Xalkori begin rad x10 30gy
05/13 Hospital 6 days postobstructive pneumonia, cavitary abscess, complete rad
06/13 Bronchoscopy RUL RML blocked 07/13 PET/CT Decrease in size and SUV Hilar 09/13 Decrease in size and SUV Hilar, infection resolving

January 16, 2013 at 3:30 pm  #1252686    

kimo

Oh, you are all so kind! It’s true that hearing my oncologist’s one-syllable statement was a sort of threshold moment even though it was exactly what I expected to hear. (She may be exceptionally reserved, but she did manage to pack a lot of drama into that lone syllable, closing her eyes and saying “No” very gently and regretfully as she moved her head from side to side.) It just carries more force when a doctor says it. For someone like me, hearing it “officially” stated that I won’t be returning to work is essential to being able to move on. I’m letting it all roll around in my mind for a few days, and then I’ll tell my employer.

I have a terrific job and colleagues, but it’s not essential to my happiness to keep working. For now, I’m glad to be free of the nagging thought that I ought to be reading to keep up in my field while I’m on leave. I have long since been trying to take care of things to make it easier for others when I die, and now I can focus my limited energy on doing what remains. And, like Debra, I expect that finishing taking care of these matters will leave me more free to focus on living just as I please and more vividly in the final stretch, however long or short it may be. I realize that my doctor’s still-pretty-vague prognosis could be wrong—various other doctors predicted I’d be dead years ago—but I still need to take action based on my best sense of my situation.

Sometimes I feel like I’m losing a thousand things each day, but in a way I welcome this. The payoff is that life seems ever more reduced to its essentials and has a beautiful, if bittersweet, character that is easy to lose track of when caught up in the ordinary humdrum.

I send each of you a cheerful smile, a hug, and my very best wishes. It’s a strange journey we are sharing, but it helps so much to share it with all of you.

kimo

(Debra—good luck finding a new home for your cat. That is so terribly wrenching.)

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