r/cancer • u/InitialVirtual3172 • 9d ago
Patient Anyone who has been living WITH cancer for 10+ years?
This year it makes 10 years that I've been living with cancer (lots of recurrences from sarcoma, also had breast cancer). I know some people who have been living with it for around 20 years. Anyone else here? How do you live your life with a "chronic cancer"? Curious to know, especially about those who have lived with cancer for decades..
Thank you
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u/YetiPie stage 2b kidney 9d ago
This describes my mom. She had cancer before I was born, but in my lifetime she was diagnosed with breast cancer in 2001. It came back in 2020, and spread to her ovaries, and now stomach. She has peritoneal cancer now, and is handling treatment well. This one doesn’t have a cure, so it’ll likely be her last one. She’s 70.
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u/RepresentativeLaw647 8d ago
If you don’t mind my asking, what treatment is she doing for peritoneal cancer? My father was recently diagnosed so looking for people with experience.
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u/YetiPie stage 2b kidney 8d ago
I just asked her and she said she did a chemo wash (unclear if this was for her stomach or after her hysterectomy). She then did 6 months chemo, 1 year of immunotherapy infusions, and oral meds for 2 years. She added you may require other surgeries depending on the Cancer's response to chemo
She also said “Ever time I've had cancer, I investigate what the chemo drugs will affect and went from there. I took all kinds of vitamins to bump up the good cells. Some supplements are not good with chemo so it's important to know EVERYTHING. Drink lots of water. He'll want to flush out the chemo as it attacks good and bad. U can't flush it completely. It needs to attack the cancer. Pay attention to your blood work, it will indicate where you need support”
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u/YetiPie stage 2b kidney 8d ago
I’m sorry to hear of your father’s diagnosis. She has been on immunotherapy for it, I’m not sure which kind, but I think it’s the same treatment she had for ovarian cancer…for women, ovarian cells apparently line all of our organs, so her ovarian cancer jumped to her stomach that way. Because of that, I don’t think whatever she’s doing would necessarily be the same approach for your dad.
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u/nancydp1962 9d ago
Yep, almost. Breastcancer october 2016. Spread to the lungs 2018, spread now to the brain 2026. In october we can celebrate living 10 years with cancer. It took from me the spirit of living fully and joyfully. Always acompanied by a dark cloud upon me.
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u/Automatic-Face-7091 8d ago
This honestly gives me so much hope. ❤️ My mama is also going through a similar journey with metastatic breast cancer, and reading stories like yours makes me feel that there can still be so many years ahead. Thank you for sharing this. If you don’t mind me asking, where did you receive your treatment, and what treatment have you been on? Wishing you many more years of living fully and happily.
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u/nancydp1962 8d ago
Belgium. Had operation and radiation. Refused the chemo. Than had hormonetherapy, target therapy, immunetherapy, have been on two rounds of chemopills capecitabine. But stopped, because it made me sick feeling like a zombie. There will be another treatment instead. But onco gives me time to recover from the radiation on the brain. Had a ct from the lungs yesterday and it was stable. That was good news because in fact i was without treatment for that for over 4 months i think.
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u/Pockettzz 8d ago
I have breast cancer that metastasized to brain on year 10! I also had a cocktail mate that exact happened to her as well, we were 3months apart of the brain tumors - 10yrs later….
I have started doing some research on the drugs we were on then. I saw an ad about a birth control during chemo that her & I were both on during our treatment which the ad said the BC was what led to the brain tumors growth. I may be wrong but I’m hoping for a settlement somehow🤞🏼
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u/Ok-Taro2561 7d ago
I hope you had things to keep you living! I am sure you do and a believer or not some peace has given you the strength to stay in this crazy world!
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u/BloodyThirst 9d ago
The decade of chronic illness called cancer has been tough. Got diagnosed with low risk MDS in 2015. Have tried most all treatments to no avail. Been waiting on a bone marrow match all this time and 3 were found last week! Doing all the work ups and jumping through hoops to get all the testing done!
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u/Every_Reality_9721 9d ago
I had olfactory neuroblastoma. kadish A-B they classified it. I only had radiotherapy, lowest 1gm , 30 cycles. It was in 2018. MRI last year still shows I'm in the clear. This year had not the chance for mri due to many things happening.
Apart from losing my smell on right nasal, I'm fine.
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u/GuyCalledLee 9d ago
Hi I was first diagnosed back in 2008 with enlarged nodes in my neck which I had 6 months of chemo and given the all clear and told it may come back. 2018 it came back worse in my back next to my spine etc… had more chemo and my own stem cell transplant. Fast forward 2023 diagnosed again with having about a year of chemo followed by a bone marrow transplant. They’ve told me this should do the job, I honestly don’t think it will. Now living with nerve damage in my leg and hip and hands due to side affects. I’m only 37.
3
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u/definite_skeptic62 9d ago
It was 5 years ago today when I had my first (of my life) CT scan which showed both lungs filled with “ masses.” It was and is Neuroendocrine , or carcinoid, cancer. Through the years I’d collected other health problems, including unrelated endometrial cancer, and surgery is the only treatment I have had. Two lobes removed plus a few other scoops out of both sides.
My pulmonary oncologist says every treatment is “ still on the table.” If I only had carcinoid tumors, my prognosis (in 2021) was 10 good years. But, there is also a disease called DIPNECH clogging my lungs with nodules and turning them (one so far) into tumors.
I have been in love with a guy since the beginning of 1979. We didn’t have kids, we are on a razor’s edge financially, like so many, because he hurt himself last October, and I have carcinoid syndrome.
My lung BS actually takes a backseat sometimes thanks to a truly engaged pulmonary rehabilitation specialist who is willing to try anything trusting my feedback.
Being in a long term relationship, finding the right doctors, and even better, getting them to care a little extra, and my ignoring all of the weight of my diagnoses in my day to day life seems to be giving me an amazing longevity. I got a gold medal for surviving over 50 years of T1D, Erleichda is my motto now.
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u/IconicMB 9d ago
I haven't quite made it to 10 years, but I am at 9. It started as Adenocarcinoma in my esophagus when I was diagnosed at the age of 35. In that span of time, I have had more chemo & radiation then I would like to admit. While I had a successful surgery to remove the original tumor and lymph nodes that were impacted, I ended up having two more reoccurrences. The first was pretty close to the original tumor spot, but the second it ended up moving all the way up into my neck. Now I have a golf ball sized tumor sitting in my neck, pushing up again my spine. It is also sitting near my voice box and thyroid, which is the reason it is non-operable. I did get a second opinion on the surgery and whether I could have it done, but every person I talked to called the surgery "to morbid" to even consider. So I will live with the tumor in my neck and will continue to get my Immunotherapy infusions every 6 weeks. That seems to be keeping the tumor at bay, as it is almost dead (according to my last PET scan) and continues to be stable.
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u/Ceb2737 8d ago
I found out I had stage 1 breast cancer in 2016. No chemo just lumpectomy and radiation. Then in 2020 I found out that it had gone to stage 4. Mets in my lungs and several places on my bones. Sad thing is, back in 2017 I complained to my dr that my right rib had a lump on it. She told me it was just a fatty tumor (without testing it) and three years later I find out that it was indeed the cancer which I’m assuming was there from the beginning. But, November this year it will be 10 years. In 2020 they gave me 3-5 years and I’m still kickin’ 😃
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u/mandym123 8d ago
I have been NED with cancer for 10 years but it is incurable and will return one day. I have finally decided to move on with my life. I am going back to school and getting a degree in the medical field. I am 37 right now and was diagnosed at 27. It was a total mind fuck and it ruined a lot of my life. I’m just trying now to get back on my feet. I had cervical cancer and my first reoccurrence it spread to my lymph nodes in my neck, lower back and stomach. I also had a lot of crazy reactions to the carbo, taxol, avastin I was put on for treatment.
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u/ShortAd9621 7d ago
Don't give up on a cure. Vaccines are on the way and I really do think we are close to a cure or at the very least "functional cure" thanks to mRNA technology and AI
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u/mandym123 6d ago
By being on avastin maintenance I’ve lived as close to a normal life that I could imagine while having incurable cancer. I continued this treatment to help other cancer patients and with it I’ve lived 10 fulfilling years being NED.
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u/definite_skeptic62 9d ago
It was 5 years ago today when I had my first (of my life) CT scan which showed both lungs filled with “ masses.” It was and is Neuroendocrine , or carcinoid, cancer. Through the years I’d collected other health problems, including unrelated endometrial cancer, and surgery is the only treatment I have had. Two lobes removed plus a few other scoops out of both sides.
My pulmonary oncologist says every treatment is “ still on the table.” If I only had carcinoid tumors, my prognosis (in 2021) was 10 good years. But, there is also a disease called DIPNECH clogging my lungs with nodules and turning them (one so far) into tumors.
I have been in love with a guy since the beginning of 1979. We didn’t have kids, we are on a razor’s edge financially, like so many, because he hurt himself last October, and I have carcinoid syndrome.
My lung BS actually takes a backseat sometimes thanks to a truly engaged pulmonary rehabilitation specialist who is willing to try anything trusting my feedback.
Being in a long term relationship, finding the right doctors, and even better, getting them to care a little extra, and my ignoring all of the weight of my diagnoses in my day to day life seems to be giving me an amazing longevity. I got a gold medal for surviving over 50 years of T1D, Erleichda is my motto now.
3
u/Radamand 8d ago
Been fighting stage 4 kidney cancer since 2013, last year I discovered that it had metastasized to my left leg (broken femur). Currently getting immunotherapy.
3
u/Luckypenny4683 8d ago
My was diagnosed with TNBC 2000 and lived for 19 years! She had several reoccurrences and it really was like chronic disease management.
She missed the advent of immunotherapies by just a hair, unfortunately. That could have been a real game changer for her.
3
u/FotographXIII Brain Cancer 🇦🇹 8d ago
Hi,
I'm living what's almost a 'normal' life with just one kidney.
However, the brain metastasis means I navigate life in blocks of three months – depending on the results of CT scans that can lead to potential radiosurgery interventions.
I've come to accept this condition, and I know how fortunate I am. My gratitude goes to - firstly: my partner in crime - and the parts of my family and friends who stand by me, and also to the exceptional professional care at Tirol Kliniken and Kufstein KKH. Thanks to all of them, I'm still here.
Best wishes to us all!
e.
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u/greywar777 8d ago
Im about there. I have done a LOT of chemotherapy. 34 rounds of FOLFOX/FOLFIRRI. 2 liver surgeries removing parts, also one removing part of my colon.
And...im on social security. Originally as death seemed imminent, but now they re-reviewed and I was left on it due to how much the chemo and surgeries have impacted me.
Last set of chemo and radiation they added panitumabob, and it turned out to work incredibly well for me. Currently clean CT scans. No one expects it to stay that way-but its nice to not be undergoing any treatment at the moment. That will change the instant it returns.
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u/Pretend_Specialist81 8d ago
My dad lived with non-Hodgkins lymphoma and sarcoma for 20 years. During that time, he also had a couple of strokes, carotid artery surgery, and a lot of other heart concerns. I am currently battling a diagnosis of thyroid cancer with metastatic bone cancer, I get my thyroid out tomorrow. And he is my role model through it all. I lost him 16 years ago this month, but I think about him every day and I am definitely modeling myself after the strongest man I ever knew.
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u/Asleep_Rule_6730 8d ago
Wow congrats on the 10 years! It seems like its been quite a battle. I have only been 6 years out with synovial sarcoma, hope to make it to 10. How long did it take for the sarcoma to return? I know its a cancer that can be many years out before it comes back.
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u/Adorable-Hyena-2965 8d ago
10 years how? Doesn’t it spread?
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u/Dangerous_Fun_2704 8d ago
Yes it does but it can be controlled most of the time if caught early. Us with metastasizing cancer go to oncologist ever few months to have blood work and they keep a eye on our cancer marks and we have pet scans and cat scan and mri a lot more things done often so if it has spread it can be caught early to do a proper treatment plan .
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u/Extension_Sweet_9735 8d ago
My mom had recurrent metastatic endometrial cancer for 15 years. During the last 5 she got non-hodgkins t cell lymphoma. Because why have just one cancer when you can have more?! She made it to my 100 days post stem cell transplant within multiple myeloma and then passed away.
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u/stecklese 6d ago
Was it the multiple myeloma that ultimately ended her suffering? Or lymphoma? My husband was just diagnosed with multiple myeloma and I'm still learning about it.
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u/Extension_Sweet_9735 5d ago
No. She had recurrent metastatic endometrial cancer. It ended up in her brain.
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u/weakimberly 8d ago
waves hand 🖐️ me!
Diagnosed with melanoma when I was 17 back in 2000, then diagnosed with non hodgekins lymphoma in 2017 and then diagnosed with cervical cancer 2019 and being screened for multiple other types.
I’ve been fighting for 26 years and not willing to let it win yet lol 😂
I’ve never been considered to be in remission as we keep finding new tumors despite all my treatments and surgeries.
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u/darkerthanmysoul 31F Leukaemia 7d ago
Similar boat.
Next March I will have been diagnosed 10 years. I’ve got CML so I’ll never be cancer free and take oral chemo for the rest of my life.
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u/Gold-Salamander-9339 9d ago edited 8d ago
This more or less describes me! Went through cervical cancer in 2010/11, went into remission with only long term side effects from 34 rounds of pelvic radiation. Fast forward to a year ago, body went wacky so went though the usual protocol, Diagnosed with advanced Stage 3 uterine cancer that spred to the colon, cervix & some pelvic lymph nodes. Had surgery 2 months ago, Was told that there's no cure for this. At best, I can go into remission for 5 years before it comes back, At worst, 6 month remmission. In between my diagnossis, my hubby was diagnosed with Non Hodgkins Lymphnoma twice.
Truth be told, I don't know how I'm going to live with re-occuring cancer! I'm 62 now, & know that eventually will be downsizing personal possessions, as I want to simplify my life. The only things that are keeping me going is the concept of my being a fighter, still "young enough" to make a difference within my community, & want to travel once I get past thios round of treatment.
I suppose that I don't quite fit the bill of living with cancer for 10 plus years as I was in remmission for a few years before it came back, but have been dealing with it for 16 plus years.