Soft Tissue Sarcoma Survivor Shares Entire Treatment Journey | Kara's Story | The Patient Story
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- Опубликовано: 20 авг 2020
- Kara Ladd was just 24 years old when she got hit with her soft tissue synovial sarcoma diagnosis. In this The Patient Story interview, she shares everything from how she knew something was wrong, pushing for a new doctor, going through two surgeries, chemotherapy, and radiation.
Time codes are below! For her full story, check out: www.thepatientstory.com/cancers/sarcoma/soft-tissue/synovial/kara-ladd.
1. Getting Diagnosed
(00:25) 1st symptoms
(2:13) Going to the doctor's
(3:32) MRI scan
(7:45) Doctor's calming words
(8:48) Meeting the surgeon - and not liking him!
(10:06) Tumor removal surgery
(13:20) How the misdiagnosis of "benign tumor" affected treatment
(14:14) Advocating for yourself as a patient
(15:34) Getting the diagnosis
(18:28) Breaking the news to loved ones
2. Treatment Decisions
(21:30) Choosing an oncologist
(23:21) PET scan
(25:10) Overall treatment plan
3. Chemotherapy
(54:00) Getting a PICC line
(26:55) Chemotherapy regimen (ifosfamide, doxorubicin)
(29:47) Outpatient experience, wearing a pump
(32:10) Chemo side effects
4. Hair Loss
(35:54) Deciding what to do with hair
5. Second Surgery & Radiation
(41:10) Next steps
(45:41) Tibial nerve surgery
(47:28) Processing post-surgery news (great news!)
(49:31) Radiation
6. Reflections
(52:13) How did treatment end
(55:17) How to ask people for support
(57:40) Cancer as a young adult, changed life perspectives
(1:00:52) Last message to others
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Lost my son June 29 2021 to this disease. The first growths removed weren’t given a biopsy. When they grew back quickly the doctor’s biopsy revealed the diagnosis. After surgery began radiation, something showed up on lungs, next chemo- it was soo aggressive and my son couldn’t cope with chemo. He died at 43. Still hard to fathom, survived by 4 children. May God have Mercy on his soul. This young lady is truly blessed to survive this horrible illness. May her life continue healthy and strong!!
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I'm so sorry to hear the loss of your son! My nephew is dealing with the same disease and this so hard on the family.
@@babyblue7798 pray he has a good outcome.💕🙏
Praying God restores your nephews bones and body from this disease is awful
I have a very rare cancer Cholangiocarcinoma only 4,000 ppl are diagnosed a yr in the USA! It was very devastating getting my diagnosed April 10, 2023. Especially; for my family!
God bless your family and know Gods wrapping His loving comforting arms around all of you! 🙏
As a uterine cancer survivor in 2009 these videos would have been so helpful to me. Diagnosis of cancer rocks your life FOREVER! Your testimony and these videos are so valuable. Thank you ❤️👍🏻🙏
Hi
The biopsy before the removal is significant. Because many times they will due radiation to help shrink it before the removal of the tumor if it’s cancer. Taking it out with just MRI no biopsy and them thinking it’s benign means they could haphazardly leave cancer tissue behind.
This is the best interviewer I have ever heard. She is incredible! Thank you for sharing your story Kara. You look amazing and I am so glad that you had such wonderful support on your cancer journey.
I'm watching this 12/23 and hoping all is well with you.
Just wanted to say thank you so much for delving into this for
us. You have helped a lot of viewers. So happy for you.
Kara! I came here because I have large tender ‘fatty’ Mass behind my left knee. In 3 years it’s come and gone 3 times.
I don’t know what it is about yet…
But I listened to this entire interview because you are so articulate and open and your final message was so insightful as to what we can learn about ourselves through such traumas.
Thank you so much! I fell in love with you as all your girlfriends clearly did as well!:) I fell in love with them, too:). God Bless and keep you in His care🙏🏻❤️🙏🏻❤️ Dolores - Cape Cod, MA
MRI scan is such a good diagnostic tool but MDs flat out refuse when you ask for one.
Empowering and encouraging in every way ! Thank you both ❤❤
Prayers aa.you move forward.hope your feeling better.im a cancer survivor .
Henrietta, thanks for your kind wishes.
synovial cell sarcoma survivor NED since 2005. Lower abb. Chemo cocktail M.A.I.D .Stay strong and keep fighting
So wonderful to hear you've been in remission for 15+ years! Thanks for the message of support for Kara.
I have a synovial sarcoma on my left foot I went to surgery on May 4th at ucla but surgeon told me it wasn't removed all the way still positive around tissue now they want to amputate so I need a second opinion
@@marinopena92 check out the "Sarcoma Alliance " web site.They have a list of sarcoma centers and Dr's. also Dr Amato is someone I love and trust You want find a Better Dr and Person sylvester-doctors.umiamihealth.org/provider/Gina+Z+D'Amato/896806
@@marinopena92how are you doing today? My daughter has SS in her foot and they recommending amputation and chemo at ucla. Is hope you are well!
@@marinopena92How are you doing? I have leiomyosarcoma in my left ankle. It isn't in the bone. About to start radiation before surgery. Not wanting my foot amputated I chose to have the tumor removed an try to get a clear margin. I have went to see a plastic surgeon my orthopedic Dr recommended. She was not for just removing the tumor. She really wanted to amputate,but it was such a shock to be thrown at you. She was like healing from this surgery is going to be difficult an amputation is probably what will happen. You could save yourself a lot of pain and know amputation would get all the cancer. But this cancer spreads thru the blood, not lymphatic system. So it can spread any time.Guess I could go ahead with amputation but at my age I'm seriously thinking of just living out what time I have and stop all treatments.
She is so beautiful.. sorry for going through cancer.
Sorry to all of you that is touched by this awful disease most of my family has been touched by this in one way or another I think you and all that support you at this time as well as the person with this should have a big gold medal and lots of care but I do wish the government would see this as an illness so they could claim sickness benefit so they could get better and concentrate on what they need to only some going through this have to work and go through this as well it must be so hard to go through this and do this too it's not fair I think if you are not well with this you. Should be able to do this it's awful worrying about money when going through this should not have to be doing this if you need time off work because of being sick there are people out that's never worked get them working not sick people if they want to or need time off while getting better god bless you all and all those that are helping people like this thank you everyone and the nurses and doctors
Hi Kara,
Fellow Coloradan here. First of all what and incredible journey. Listen to you i would give you all of the days I have left. You’re going to do a lot of good things and help a lot of folks. As for me the picture is not so bright. I have soft tissue sarcoma and have just finished round one of chemo, after surgery and radiation in my case. Mine was very similar to yours, in July I climbed Pikes Peak, (just what all 65 year old workout nuts do) and July a virtual appointment with my Dr. said the bump on my calf was probably nothing. I see him 2 weeks later, mri next day, surgery 8 days later, stage 3 tumor, pet scan negative, however and there’s always a however, cancer in tissues around tumor. Kara, your description of the emotions and spot on, wheaten your 25 or 65 we still are in shock. So even though after completing the treatment I’m only a 50/50 for 5 years. But hey, I’ve lived a great life and I’m so happy you are going to be around for those 40 years or more. This is an interesting observation that I’ve made since getting cancer. I use to feel very sorry for the folks in a nursing home. I thought how terrible, how pathetic. Now I envy everyone of them, how great it it would be to live to 90, even if the last few years would be in a home. How lucky they are...and I wish I was one. Scott in Colorado
Scott, thank you for your wonderful message to Kara and for sharing your own personal story here. We are sending you best wishes over in Colorado!
Please change your lifestyle.. Sedentary lifestyle, eating habit (go raw for 6 months, no cook food), support with black seed and garlic a lot. This for immune and WBC. Take with little honey that helps you to swallow with water.
Get a trainer and go to gym regularly to avoid lazy muscles and makes them all activated from cachexia. Hope God helps you InsyaAllah having strength and no regret to fighting. 🙏🙏
Just a question to all,
Still having problems with a stiff calf after radiation, chemo, and surgery a year later. My doctor just said “your lucky we didn’t cut off your leg”. Anyone else getting relief from the stiffness and leathery feel of post radiation limbs. I know that without part of my calf it will never be the same but I would just like my trip to bathroom at night not to be so painful.
Thanks to all, and God Bless,
Scott
@@RSO-IV Please stop with false advice. Diet won’t prevent metastasis.
Scott, i am a retired Marine and maybe if u have time u could help me understand why u would like to live as i said even at 90 on a nursing home? I want to understand so maybe i have that drive to live. I raised my kids and now just working on my house. I see no point in wanting to live if i cannot function without assistance. I hope you do understand and maybe give me an healthier prospective on wanting to live to be older
Thank you so much
Thank you for your personal story. I was just diagnosed with MPNST and I am not prepared. But listening to you gives me hope. Thank you.
Robert, I am sorry to hear about your own diagnosis and am glad Kara's story was helpful. If you are looking for more stories, you can find it at www.thepatientstory.com. Thinking of you. -Stephanie
My brother died last year at 36 of ewing sarcoma pnet
I was recently diagnosed with MPNST
Fight hard! MPNST is VERY difficult. It can be beaten. We had a patient beat it. She is 21 years NED!
Now i am thinking MPNST.
Thank you for this video. I am just in the process, waiting for high-dose chemo and I just need some evidence that all of this can have a happy ending and that it does worth it. Thank you, brave.
We're thinking of you! If you want to read more survivor stories that are in-depth, check out www.thepatientstory.com. Sending you best wishes :)
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Your not alone I start treatment in two weeks.
@@frankpadilla5380 I guess you are starting now. Best wishes. I am right now at hospital with high dose chemo, so we both are on the way. Strength.
@@lindadrothwell237 That's the same treatment Plato used to treat cancer when he thought it was caused by black bile imbalance lol. He called it crabs or cancer because that's what the tumors resembled with the blood vessels Looking like Pinchers. His treatment had a 5 year survival rate of zero and you're taking advantage of desperate people by selling them useless stuff as a cure. Shame on you!
Yes! You aren’t required to tell anyone or everyone.
Its so odd and unfair how cancer hits totally unexpected to some people. Heres a totally very healthy 24 year old obviously incredible genetics, the last person u would think at that age would develop any type of health issues let alone cancer. If i get cancer I deserve it being 52 and having bad habits but I’m still here??
I don’t understand, non the less i am so happy u are doing so much better and survived it all. Maybe God put u though all this so u could help others though the struggle recovery process
Tell me about it! I was also diagnosed with synovial sarcoma when I was 24 years old 💔 I felt so betrayed.
There's no god. Some cancers just happen, due to sheer bad luck
God bless you!
Thank you for sharing. I was diagnosed January 2020.
Please give updates with you
Hope your well, sending tons of blessing
I'm a sacorma Survivor. My tumor start on Nov 2020 and it was a the size of a profoot ball by the time is was removed June 2021. 3 YEARS NED. I did loose a right bicep.
I hope Kara is doing well now Stephanie. Do you have any updates?
Thank you for sharing your story. My wife was diagnosed with a sarcoma mass on her spine. The pain she is dealing with is horrendous. They have her on a pain patch and oxytocin witch helps but only for a short time. We are waiting for 2nd part of test for genetics of this tumor. They started treatment immediately do to the speed and damage this is doing to her spine. They also want to do radiation to the large mass. We are so scared
May God give you and your wife the strength to persevere through such a difficult time. It’s wonderful you have each other.
How are your wife now ?
I have the same symptom in my leg but no bumps anywhere gonna get it checked soon
So glad you are getting yourself checked out! Best wishes to you.
Sounds like this woman went through the mill before she was properly diagnosed! It's scary when doctors dismiss something as minor prematurely when it is something serious, and especially troubling to hear that even a PET scan can miss it, as that is one of the most advanced scans one can get. I have had a lot of bad experiences with doctors so now I am hesitant to get something checked out when I need to. I was led to this video because a few months ago I noticed that my thigh was getting some numbness on the outer side about halfway up and I thought it may just have been the way I was sitting or lying on it at night, but then I went through a period that it was itching like crazy deep in the muscle. Now it is numb almost constantly and over the past week or two I started having sharp tearing type pain in it when I move certain ways and it is generally sore when I feel it, but in the process of feeling it I've been noticing lumps, some of which are pretty deep. It's getting to the point that I probably can't wait for it to go away any longer. I'm on Medicare and Medicaid so God knows what kind of care I will get.
I am so sorry to hear about your bad experiences trying to get medical care. You are not alone, and hopefully you will continue to advocate for yourself by pushing for the right medical attention. You deserve every bit of it, and we're the only ones who will do this for ourselves 100%. Sending you hugs. -Stephanie
I am in same position as well. It’s really difficult to advocate for yourself if no one wants to do the procedures necessary for a sincere and confident diagnosis. In my mind, I like to say “You can’t tell what’s wrong with the leg by merely looking at the leg, you have to look into the leg.” Since I’m having a lot of leg issues, especially with the muscles, I keep urging for a MRI and they simply refuse to give me one. It is frustrating because then you feel unheard and ignored. It’d be great if professionals truly listened to their patients and instead of going by what’s common, go by what the patient is telling you. They are 2 experts in the room, not only one.
@@Laura-vl6db i am having the same problems. The doctors flat out refuse when you ask for an mri! Why? They want to delay and dismiss. It's awful.
I have a soft tissue sarcoma in my left ankle called leiomyosarcoma. From my resesrch chemo doesn't help with this cancer. Radiation and surgery .Then maybe immunotherapy. Oncologist said we would wait and see how Radiation and surgery goes. Amputation of my ankle was the first thing i heard . I wss in shock so I'm going fir limb saving surgery,but i will need a plastic surgeon i have already talked to. Things are going slow for me i don't know why. Saw Radiation department almost two weeks ago. No call yet when they want me to come start. They have already mapped out my ankle for it. I'm a senior and feel they don't care. But i have grest insurance an i know they gonna do a lot of tests. I can't begin to tell you how many CT MRI pet scan biopsy,blood tests. But no actual treatment yet. I started this journey in December 2023. It's now April.
I also have a soft tissue sarcoma on my right vocal cord and have had my right vocal cord cut.
Are you right now.
Has your treatment completed or not and what is the situation right now..
My concern with these videos is that everyone is a survivor - that’s not reality
Neulasta pain is absolutely crazy.
Hi Arin, I've heard this many times and experienced it, myself. This isn't a medical advice-giving site but from patient to patient, I took Claritin and it helped me (though it doesn't help everyone!). Best of luck! -Stephanie
I had Clear Cell Sarcoma Cancer ♋️ tumor removed from my foot very rare Cancer I was looked after immediately in Toronto Ontario @ Princess Margaret Hospital. Radiation & amputation.
Your an absolute warrior as are all the other individuals that get such a shocking and life altering diagnosis. Any chance you may be up for helping a young mum out with some information about your journey with CCS ? I have looked on the internet at many websites but i would very much prefer a first hand account. Will totally understand and respect your choice if you say no. Sending my thoughts and prayers your way 🙏🏻
ive had half a dozen MRIs and i have never been allowed to sit up during one
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how is she doing now?
You didn't get any painkillers for Neulasta pain? Without OxyNorm (opioid) I could not have bared the whole treatment. Went to it gradually from other substances. Before it was introduced at me I was a regular ER customer. Gosh, without it it felt like chest wall was just about to explode! I mean wow if you went through without proper painkillers for the Neulasta pain.
Thank you for sharing your experience!
My son has Ewing Sarcoma. Is Keto diet recomended for this tipe o cancer? Or is vegan and juicing a better option?
It's June 9th 2024 I start chemo on June 12th for ewing sarcoma. Mine is on the fleshy tissue not the bone. I've got alot of treatments to go and a long row to hoe.
My doggy son Butter Bear has Grade 2 Soft Tissue Sarcoma and he is getting his front limb amputatated. He is 10 1/2 Told it is the Cure
Hello. Can someone pass me a contact or clinic or doctor that could help us.
My friend has fibrosarcoma and in her country they are sayibg that there is no cure.
If i understand well the tumor is in soft tissue under the fat cells but not in bone . It is near the hip area.
They said cutting the whole leg will not help.
She had 2 years of chemo and now something spread to her lung.
Can anybody send us a contact?
Hi Keith, we don't provide medical center recommendations at the moment. We encourage reaching out to your major medical providers for first, second, third opinions. Sending you our best wishes.
Sarcoma depends on luck. No ppl will try to help. Even doctors also will run.
I have dealt with a lot of sarcoma patient. If you can do surgery, go for it. Chemo and radio will not help. If you can avoid chemo radio, do that.
None of studies will help much. If cancer experts also not going to study since 1960, what about you. I hv gathered thousands of documents from the web, be it videos or web or pdf, all will die so far. Some success with 3-8 years relapse. When relapse, you only got 6-11 months to find cure. All by yourself. Any sort of ppl also not able to help. Find it by yourself. 🤣🤣🤣
There are Facebook groups for DFSP (dermato fibrosarcoma protuberans) that your friend can join to get support.
It’s usually something that can be removed surgically with no radiation therapy required after. Again, depends on where it is , can they remove it all with good margins , how long it’s been there etc.
@@RSO-IVHello, My mother is suffering from mysofibroscarma, she has done 3 surgery but now the doctor is saying for amputation whole limb but it has come in the pelvis area also. Now we met with MD oncologist, he said for chemo Doxorubicin and ifosfamide, will it help, She is 67 years old
Totally confused....there is a "cure" for synovial sarcoma?
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She is preety !
Inside and out! Kara is a true advocate for others.
My father is facing Soft tiasue sarcoma under or between the neck. Plz praye for him.. Is their any chance of recovery plz tell me.,,,
Who is the person asking questions
Hi Pearl, my name is Stephanie, a non-Hodgkin lymphoma survivor. The newer interviews show my face - back then during this interview, we had a different set-up. Thanks for watching! -Stephanie
Did anyone lose weight, before being diagnosed.
Avoid NYU!
Can you not say GOTCHA? Extremely annoying!!!
So much tal,ing really sounds fake $$$$
What's tal,ing mean?
Why are you watching an interview then?
Headed for my third surgery with sarcoma on my leg. Also had 33 radiation treatments.
Wish I knew what causes this cancer. I’ve spent my life farming with exposure to chemicals.
Retired 82 year old female educator. 21:10 21:12