From Doctor to Patient: How I Got Diagnosed with Cancer (Lymphoma) | Robyn’s Story (1/3)

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Robyn S. was always on “the other side” of cancer: the doctor. For years, she was the radiologist, helping others figure out what was going on with their bodies. In 2011, she felt something abnormal - that was the start to a huge shift in her life into cancer patient, herself.
In this first part of our conversation, she shares the experience of going from doctor to patient, how she learned she had diffuse large b-cell lymphoma or DLBCL, a subtype of non-Hodgkin lymphoma, and details her chemotherapy experience (and even booking travel between chemo infusions!).
Thank you for sharing your story, Robyn!
Full story & transcript → www.thepatientstory.com/cance...
Series Videos:
1) From Doctor to Patient: How I Got Diagnosed with Cancer: This Video
2) Cancer Relapse: Chemo, Radiation & Stem Cell Transplant: • Cancer Relapse: Chemo,...
3) Doctor Undergoes CAR T-Cell Therapy Clinical Trial: • Doctor Undergoes CAR T...
The interview has only been edited for clarity.
Join Our Community:
Website : www.thepatientstory.com/
Facebook: @ThePatientStory
Instagram: @ThePatientStory
Twitter: @patient_story
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Contents of this video:
00:00 - Intro
02:12 - Perspective from a doctor on first symptoms
03:05 - Looking at the diagnosis from a radiologist's perspective
03:57 - The realization of the diagnosis
06:08 - How did you know that it was an abnormal lymph node?
06:47 - The search for answers
10:10 - Breaking the news to your loved ones
11:45 - Guidance for other people breaking the news to kids
14:10 - Going through R-CHOP and the side effects
16:06 - Did the side effects get better or worse?
18:58 - Describe the follow-up post chemo
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#lymphoma #nonhodgkinlymphoma #dlbcl #LLS #thepatientstory #patientstories #cancerstories #cancerpatient #cancersurvivor

Опубликовано:

9 июл 2024

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Комментарии : 124

@ThePatientStory Год назад

We’d love to hear from you: what was the biggest lesson you learned in your own cancer diagnosis? Leave us a comment below 👇

@dorisjoseph8269 Год назад

Doagnosed with Stage 4 lung ca in 2019. Felt a supraclavicular node too....had an intermittent cough but was otherwise ok. I'm also a physician. My biggest lesson...dont be afraid of getting a second opinion...nobody knows everything.

@nicoleholding Год назад

@@dorisjoseph8269 It is not the fact that doctors don't know everything it is their attitude and poor communication skills - fobbing people off and not trying to tick off potential diagnoses. As an ex-Registered Nurse I have worked with too many incompetent doctors who think they are God's gift to medicine but know very little. People don't expect the to have x-ray vision but to keep working until they find the answer of the patient's problem.

@Wildrosesmyl Год назад

I just felt a supraclavicular lump right above my clavicle tonight. I immediately came back to this story as this factoid stood out in my memory. I've even taken pics of it, because it's that noticeable. Wham it hit me in the face as the last couple of nights I've been sweaty and just was in the ER on the weekend because my pelvis and the femur on left side hurt so bad that the pain was unbearable after 6 months of getting worse. They performed an x-ray to make sure I didn't have a broken hip. The radiologist reported that it appeared that I had significant in the hip and very significant in the lower lumbar arthritis. I'm getting a hyster for cervical cancer in less than a month. I think I'm going to push for more imaging now.

@janereinhardt4715 Год назад

My dad had the exact same lymphoma, diagnosed in 2011 or 2012. He was in remission for about 7 years before it came back. I moved in with him & took care of him his last 10 months & was with him 24 hours per day. We went everywhere together, including chemo, bank, grocery store, my pedicures & hair appts, etc. He never complained.

@tamiewert808 Год назад

Great video! She was very lucky to be in a position to get a scan next day, because most people can wait months to receive a diagnostic scan! It's really hard to wait and worry!

@SonjaBecky Год назад

As if the elitists would wait.

@RighteousMum 28 дней назад

I totally agree, and that is usually the case here too. But I went to my doctor Tuesday and I have my scan and biopsy tomorrow. So pleased they could get me in early.

@MTknitter22 Год назад

Physicians often have absolutely changed attitudes forever once they are on other side of the “system.”

@ThePatientStory Год назад

Perspective is everything, isn't it? Thanks, Charlotte.

@lynnmahan154 Год назад

No doubt whatsoever. Books have been written by some of them.

@thomasjensen6243 Год назад

She's not on the other side. She's on the side where she can get things done quickly.

@SonjaBecky Год назад

@@thomasjensen6243 exactly

@JasonCarney. Год назад

No one else would get a FULL BODY CT SCAN after finding ONE enlarged lymph node. Glad for this woman she got top notch care, but just highlights how much medical "care" is about profit.

@cyndijohnson5473 Год назад

I think it’s mostly about doctors losing the ability to be good diagnosticians. They only do what their tests tell them to. But don’t worry! AI will be reading the scans soon, and human radiologists won’t have jobs much longer.

@mandi070210 10 месяцев назад

Am I the only one that is kind of salty that she has people who listen and has the special privileges of being a Doctor to get everything done right away and not dismissed like us that are not doctors that fight to be heard.

@HopeofGlory-qx4lk 2 месяца назад

They look after their own…

@robinszumanski2941 2 месяца назад

Of course. The odds though of this happening to oncologist, probably not so much, but of course she would be green light through to treatment. She literally spends all her time doing what she needed to be done. That's what she choose to do with her life and I imagine worked really hard to be there so yea. I'm not salty it's understandable for me. If it were you; my guess would be you wouldn't say " no,no,no first come first serve". No way would you wait if you have access to it.

@flxmkr Год назад

Any normal non-medical person would’ve shrugged it off. Then it would’ve taken them months to get all the tests done. I think more medical personnel should share their stories so we know which symptoms to take seriously.

@SR-pb8id Год назад

No one is exempt from cancer . Best of luck and health

@motherofthreeb6337 Год назад

Must be good to be able to get the scan the next day! Many have to fuss with doctors to get test done; it's usually "all in your head" when we have concerns! All her tests were "quickly" done!

@gouldgirl1966 Год назад

This is the exact same Lymphoma my Husband had seven years ago. His was in his pelvic area though. His first symptoms were a pinched nerve going from his groin down his leg. Then he started getting night sweats, waking with his side of the bed drenched. I knew that was a bad sign, and sent him to the hospital. After doing a CT scan, they found a tumour 17cm x 8cm, and several other lymph nodes affected. He was stage 2b. He was started on R-CHOP almost immediately. Then radiation for thirty days. Thankfully, he responded well and is now considered to he cured. Sorry to here hers had relapsed. I hope further treatment was successful.

@ThePatientStory Год назад

So glad you helped get him care and that he is doing well now :). -Stephanie

@kathyfortin7227 Год назад

So lucky to be correctly diagnosed and have been able to have treatment so quickly! Wish that was my experience. I waited almost 4 months for surgery, Chemo & radiation.

@lynnmahan154 Год назад

That really sucks. I'm sorry to hear that. My diagnosis was delayed for about 3-4 months.

@doesnotFempute Год назад

And not to have to fight with insurance for precertification and p2p review. Can you imagine one of us peasants getting right back on the CT machine for another scan, instead of waiting months for approval?

@nicoleholding Год назад

If she wasn't in the industry but instead went to a local doctor with a 14mm enlarged node she would have probably been fobbed off, told it was an infection, or told it was all in her head then would have had to fight to be heard and wait weeks for a biopsy. You can probably tell I have no faith in the medical profession after it took me nine months to be listened to. Even my 10 year old at the time diagnosed me but five doctors, two specialists and an emergency room doctor all fobbed me off despite me having balance issues, headaches and the list goes on. In the end I refused to leave until I had an MRI and I was threatened by security to leave. I got the MRI and was diagnosed with five hours with brain cancer but because of the delayed diagnosis have permanent mobility issues. One doctor apologised.

@jesusis1459 Год назад

I'm waiting currently, for a biopsy of my uterus, and a nodule they found. They haven't scheduled me yet, because they are booked up till December and their calendar doesn't go out that far. I have a growth on my ovary, which they are saying it's most likely a cyst and they will monitor it. I have no faith in medical either, as they brush lots of things off. I'm symptomatic on top of that. They classified my biopsy as "elective surgery" it's not a boob job, for crying out loud! It's terrible

@nicoleholding Год назад

@@jesusis1459 "Most likely a cyst". What, do they have x-ray vision or something. They are just guessing and more often than not they are wrong. I used to a a Registered Nurse working in theatre and by golly I have seen it all.

@jesusis1459 Год назад

@@nicoleholding I don't think they can tell from an ultrasound. I have actually 3 growths. 2 in my uterus. I've been watching cancer testimonies on utube, and many women have said they have mistaken cysts on their ovaries, when it turned out it was ovarian cancer. I even messaged my dr asking if she could send me somewhere else to get in sooner. She hasn't responded. She tried to do a biopsy in office the day I went in with suspicious symptoms, but my cervix is closed? So they need to sedate me now to do it. I'm sorry for what your dealing with. I've had vertigo, and balance issues for 15 yrs. They never found the source of it, so I just live with it

@thomasjensen6243 Год назад

Wow in my town your gonna wait 3 months to see any doctor.....but yet she can get everything done the same day. Some people matter and many people don't matter.

@annA-fl8um Год назад

nothing new

@jmr9735 Год назад

Well, she had direct access to the equipment, which is naturally going to make all the difference. That said, I had melanoma. When my doctor first suspected it, she said it would be really tough to get in to see a dermatologist in my town. She looked a little further out, and I got in to see one a few days later. It turns out, the wait in my town was over 3 months just to be seen initially. Definitely look around.

@kiwipics 10 месяцев назад

I'm perplexed, to say the least because a CT / PET scan gets run with a single enlarged node in the states. I have multiple enlarged nodes in the neck and tongue area, para Oesophageal and para Aortic nodes. I've been investgated for gastric, head & neck, Oesophageal cancer and Lymphoma because of multiple gastrointestinal issues, night sweats, neuropathy, chest pains, back and bone pain, vomiting and regurgitation. The good news is (depending on how you look at it) that I supposedly don't have cancer. What the hell is it, because after 5 years I'm fed up with the standard "the good news is you don't have cancer" line from Drs.

@HopeofGlory-qx4lk 2 месяца назад

She’s “privileged”

@flxmkr Год назад

OK... so who else besides me felt their collarbone for a clavicular lymph node while they were watching this?

@bella3987 Год назад

I actually had a swollen one in that spot after a vaccine about a year ago but it went down after a few days. So no, it’s not always cancer.

@sbocaj22 Год назад

@@bella3987which vaccine was it? Cuz I’ve had that reaction twice; both times to the tetanus booster.

@bella3987 Год назад

@@sbocaj22 Yep once was one of my Covid boosters and the other was a Tetanus booster! Craziest thing!

@mariajones827 Год назад

Sending prayers to you and your family. This is a lot you are going through, but the reward in the end will make it all worth it! You got this!!!

@RighteousMum 28 дней назад

I think it is much easier for doctors in this position to get diagnosed, where someone like myself you have to push to be seen.

@frag_g Год назад

Now, I don't wish cancer on anyone and it's fortuitous that she was able to get ahead of it, but to say she knows what it's like to be a patient, is a massive lie. Because of her employment affiliation, she bypassed the literal Hell every other patient has to go through just to navigate the skeptical physicians and the hospital / insurance bureaucracy on top of a catastrophic prognosis. To say she knows what her patients go through is a bold faced lie.

@HopeofGlory-qx4lk 2 месяца назад

I agree with you!

@kimberlymarshall3977 Год назад

She had a aggressive, form of cancer. How is it that she can, get test done, diagnosed, and start treatment right away; so her cancer doesn't spread. Then there's the "other people," who have to wait long lengths of time; to even get the first appointment. Then long waits, for everything else. Unfortunately many other people who, had aggressive cancer waited so long; that their cancer spread and they died. Not fair at all, everyone's life matters. It would have been nice, of that doctor to start helping other. She knows what she been through, and she knows how it feels. Help to stop long wait times, give everyone the same opportunity she had. Everyone should be getting help right away, just like her. So many people, just don't care. As long as them and their loved ones are ok, to hell with everyone else. God bless!!! I'm happy she's doing great. It's just unfair, that everyone is not treated the same.

@danacaro-herman3530 Год назад

@Kimberly Marshall. As an an RN, it's imperative to be your own health care advocate. I do the best I can for myself and my husband although there's room for improvement. I know absolutely one thing is for sure there's a huge upsurge in cancers from the "V" . Please be very careful.

@ThePatientStory Год назад

Kimberly, thanks for taking the time to leave your thoughts. Totally agree that there's a lack of equality that needs to be addressed in terms of overall access to good healthcare! Also agree with Dana's comment below that we need to be our own health care advocates whenever possible.

@kimberlymarshall3977 Год назад

@@danacaro-herman3530Lots of people advocate for themselves, and their loved ones. That has nothing to do with, finding something suspicious on your body, getting ex-rayed, biopsy, diagnosed, and start treatment within a week. It's obvious it can be done, she's living proof. So please explain to me, why everyone is not treated the same way?

@danacaro-herman3530 Год назад

@@kimberlymarshall3977 I wish I knew hun, I certainly was not in the same boat as the fortunate doctor. When I was suspected of cancer, believe me, I had to wait as well. However, I had to truly advocate for myself to get tested to begin with, otherwise my pulmonologist was going to dismiss the 5mm nodule on my right lung accidentally found in ER for a diverticulitis diagnosis. It turned out I have a debilitating disease that has affected my organs, ( including my heart), lungs, spleen and eyes called sarcoidosis. Without me pushing for another full CT scan, I would have never known why I haven't been able to work for almost 2 years due to the debilitating fatigue this disease has brought me, that I've had for years undiagnosed. I don't know if that answers your question. Doctors know each other and network.

@apohlson1 Год назад

Exactly! When she said she got a cat scan right away & was able to get off the table and tell the staff to do another scan higher up I felt my blood boil. For a regular person it would take 2 to 3 weeks to see primary doc. Then that doc would probably blow you off. Then you would come back again before they would take you seriously. Then it would take weeks to get a cat scan authorized. Than a couple more weeks to get a cat scan appointment. Then days for the scan it to be read. Probably would be 4 to 6 weeks to get this simple test accomplished.

@lynthompson9100 Год назад

So sorry to hear this! You are so brave…prayers you fight this and come out a winner!

@kathyfortin7227 Год назад

Thank you for sharing your story!

@paulatristan8189 Год назад

I would just like to say many positive blessings to you Doctor🙏🏼💜♥️ you've got this👍🏼🎉

@alohatvj 9 месяцев назад

So happy your Lymphoma was discovered and the scans performed immediately 😍 so you could take action quickly.

@jodiebird1551 Год назад

Thanks for sharing, the kids must have been very scared. Glad you pulled through. I had a lump in my leg years ago and a vet friend was concerned but it was a cyst. Then after a stressful trip to a conference with loved one who has mental health issues, I found a lump in my neck but GP said nothing to worry about likely just an infection. That too went. Had a UTI that was not treated well over Christmas last year and I was wrongly sent for an urgent bladder cancer assessment. Told by the assessor not warranted that was a relief. I developed Urticaria and a septic hand as immune system went out of sorts. But in this life just make the most of each day because we never know if it is our last or what tomorrow could bring. Most of these illnesses seem to stem from our immune system and inflammation.

@ThePatientStory Год назад

Jodie, thank you for sharing your experience - sorry that you had to go through what you did. I hope you're feeling much better now. -Stephanie

@whyujin Год назад

fascinating and informative …if we can have more pointers on what signs to look for like thr lymph nodes above the collat bone kinda thing , could be absolutely life saving thank you!

@CC12398 Год назад

Such a strong woman. I can hear the trauma in her voice.

@elisabettapaddon6470 Год назад

Praying for you beautiful 💜

@sonnysnavarro6860 Год назад

Congratulations 🎉

@laylabrown7407 Год назад

I was diagnosed with a stage 2b and already in lymph nodes 5 yrs ago , and i was almost devastated if not for my friend and with the help of a herbal doctor. Today I'm strong ,Hear me you can fight this no matter what. Stay strong out there.

@elizabethmcleod246 Год назад

What worked for you? Thank you.

@calliecooper99 Год назад

Praying 🙏🏻❤️

@kevanhubbard9673 Год назад

DLBCL is one of the more common, the most common I think, non-Hodgkins Lymphoma.The B Cell ones are better understood but the T Cell ones are much rarer and very hard to cure.

@lisakrajewski4699 Год назад

My Primary, gynecologist, optometrist, and my endocrinologist get me in right away. I have a soft lump above my clavicle. My Primary had me taken care of quickly. I seem to get really good Doctors. I'm doing well. Praise JESUS ❤❤❤(Praying for you)

@lisakrajewski4699 Год назад

....My husband had cancer. Doctor's and nurses took really good care of him. We had to go to Shands in Gainesville FL for high dose Chemotherapy. Two Bone Morrow Transplants, etc. I'm just so happy He is still alive. His Surgeon's name was Dr. Allgood! Lol! Yes, Dr. Allgood! And he was awesome! (Roman's 8:28)❤😊❤

@debbyc8722 Год назад

How big was your soft lump? It’s gone now? Thank you

@kmerrillschaecher984 Год назад

The thing that I don't understand is people keep saying I was healthy, I was healthy. We were all healthy till we are not!

@MF-ty2zn Год назад

They mean, "I wasn't morbidly obese, smoker, or alcoholic."

@kmerrillschaecher984 Год назад

@@MF-ty2zn I know what they mean.

@cancerJEDI Год назад

#CancerJEDI thanks for sharing your story . 🙏 praying for you warrior

@WilmaAlvarado-me7wp Год назад

Okgracias yFelicidades

@kmtaylor88 Год назад

Wow 14mm, glad it was addressed early. The description below the video needs to be edited 'figure out what's going on with their bodies'?!

@RalucaBlajut Год назад

Is an infraclavivular lymph node as dangerous as a supraclavicular one? I know the Supra almost always means cancer, but what about a swollen infraclavicular node? How dangerous is it and how quickly do I need to get it checked out? Thank you!

@ThePatientStory Год назад

Hi there, we don't provide medical advice like that - definitely get it checked out with professionals if you are concerned. Best of luck to you. -Stephanie

@RalucaBlajut Год назад

@@ThePatientStory Thank you, Stephanie! I made an appointment with a hematologist to check it out!

@ThePatientStory Год назад

@@RalucaBlajut so glad to hear it!

@giom5264 Год назад

@@RalucaBlajut any update?

@mandyscott175 Год назад

I sorry to hear this but at the same time why do doctors get seen to the next day when we have to go on waiting lists .we are all the same human . Glad you are ok

@rdizzy1 Год назад

Because they have friends that can do scans immediately, not as a normal patient, but as a friend.

@vanessahaddad8782 Год назад

I have had a puffy swollen left side clavicle for over a year now but without any lumps or bumps. A month ago a hard lump was noticed by myself. Went to Doctor and she felt another lump a little lower. I’ve had an US done on the area and of both my breasts. Now just waiting for results. My gut tells me somethings not right.

@HDWorldclass Год назад

Hope you’ve had good news ❤

@vanessahaddad8782 Год назад

@@HDWorldclass thanks for replying. I had an FNA that came back clear. Went to ENT which they put a camera down my nose and they said clear also. They also told me that the lump is nothing and the puffiness is nothing and my doctor got it wrong. Nothing needs to be done. Went back to my doctor and she has asked me to see a haematologist but I told her I don’t want to waste their time. I’m worn out and with all the clear outcomes, makes me feel like I’m crazy. I said I’m just going to leave it alone. I don’t want to look stupid.

@tomdean104 11 месяцев назад

@@vanessahaddad8782keep pressing

@mandi070210 10 месяцев назад

Yup same and I've been fighting for almost a year for people to listen got denied by the interventional radiologist to do my biopsy that was ordered by my oncologist

@shawshank6015 Год назад

just wondering after she said she had the lymph node by the collar bone who automatically started feeling their collar bone 🤔 🙈

@lesleyhubble2976 Год назад

Straight away

@shawshank6015 Год назад

@@Glayd0161 same here 🙊

@4fatty2x Год назад

Neupogen/Neulasta stimulates WBCs to help fight infection - not RBCs to decrease anemia. She should know that

@nicoleholding Год назад

I thought the same.

@nicolemarieb.7044 Год назад

I had swollen supraclavicular nodes after a vaccine, so it happens. However, they were painful so thats usually the immune system doing that

@shawshank6015 Год назад

was that after the coved vac

@danacaro-herman3530 Год назад

@Nicole Marie B. No it's not, as an RN that's not true, it's only been happening with this recent C "V". Do not listen to the medical establishment. These inoculations are u n s a f e!!!

@lindagallagher2794 Год назад

I have swollen nodes in my breast and I was asked if I had the Covid vaccine. I am having another scan in a few months

@danacaro-herman3530 Год назад

@@lindagallagher2794 Be careful Linda, if you've read my above comment. Be careful, God bless🙏

@adulaide Год назад

so... she has 1 single lymph node and a doctor goes "omg you have a lymph node, (...) CT scan"... i told my doctor that, a 1.5 years ago i had 1 lymph node on my neck and a mass on my breast. and also, when i went to the appointment, it was already tons of lymph nodes all over my neck... he touched the neck stuff, and not the breast mass... cause he was a man and i'm a girl, and he didn't have a nurse there at that time... as if "asking for conssent" isnt a thing... anyways... He said it was likely benigne (and completly ignored the fact that they are "spreading" and that i said i was losing weight - he just said "oh, that's normal" and didn't even asked anything about it - and i did NOT have any infection)... Now, it is already in my groin, and i feel weak, like if i was 50 (i'm 21)... still waiting for the ultrasounds' date and the appointment, cause health appointments take so looong to get scheduled :// And... wait a second... Nausea is a cancer thing too??? Cause i never used to get nautious in cars ever... now, ever since a few months ago (post feeling the neck lymph nodes and the breast mass), i NEED to go on the front seat, not look at anything for too long, avoid reading anything at all, head always looking front... or else i'll get nausious... Whoopsies... Guess i gotta tell that to the doctor too...

@JuanDiazSilvermyst Год назад

I want to take that galleri test to see if i got cancer

@marthaschoendorf8505 Год назад

Dog Dewormer. Look up the info. I hope it helps. God bless U.

@SonjaBecky Год назад

I. Am. Disgusted.

@MF-ty2zn Год назад

My spouse had 3 rounds of the red devil and it caused kidney failure.

@Gurlhmong 8 месяцев назад

Although I appreciate this story and her experience and her knowledge. IT’S NOT THE SAME, one does not get a ct/pet scan the next day and then a biopsy needle within days. She is oblivious to her entitlement. Secondly, she should just speak from a patient stand point and stop inserting her “experience” , “work”, or “radiologist” with every sentence, I can see why the comments are annoyed with her. 😂

@HopeofGlory-qx4lk 2 месяца назад

“Privileged”

@brucemaher7621 10 месяцев назад

I wonder if Robyn still eats sugar being how Cancer loves sugar...

@lady4191 Год назад

Don't worry the jab didn't have anything to do with it

@danacaro-herman3530 Год назад

@Lady. I hope that was a sarcastic remark because you tube keeps deleting my posts about this topic.

@rubyiskira8939 Год назад

Did you even listen that she got sick over 10 years ago

@cyndijohnson5473 Год назад

I know I’ve never felt the same after the shot. But not all cancer is caused by it. We have tons of other toxins in our environment that cause cancer.

@MTknitter22 Год назад

Physicians often have absolutely changed attitudes forever once they are on other side of the “system.”