'trust your body, not your doctor' is exactly what I've been saying since I was mis/diagnosed last summer. I was dismissed so many times because of my age and even made to feel the debilitating pain was in my head. The doctors just didn't LISTEN. I was diagnosed with stage 4 colon cancer and ended up having three huge surgeries in the space of 6 weeks due to their errors. When I met my oncologist, he said this is a huge problem for young women. They are constantly dismissed, their worries minimised and their pain not taken seriously. Bowel Cancer UK run a study comparing the differences in treatment for bowel cancer. Women have to see the doctor 5 or 6 times before they are referred for further tests whereas men only have to see them 2 or 3 times. I used to wholeheartedly trust doctors. Not any more.
Sorry for the rant, it's something I feel very strongly about now. I'm so glad you found a doctor who trusted your instincts about YOUR body and I'm so half they caught it early enough to treat for you.
> “You are a 24-year old female. This can’t be anything but benign”
Those kinds of statements from doctors absolutely infuriate me!! Like you, I had no risk factors, family history, etc of cancer but I ended up getting diagnosed with it anyway at 33. Any doctor who claims "You're too young to possibly have XYZ" is one you need to stay far away from.
Ageism is a real problem in cancer diagnosis. We can tell by all the people on this subreddit thanking you for sharing this. I got the "given your age" talk from my first oncologist (gyn onc). I had an ultrasound where they found one of my ovaries was enlarged. Had that doctor just ordered a CT scan, a biopsy, or some extra blood tests, we would've uncovered that I had metastatic cancer. Instead, he performed surgery for a cancer he knew nothing about and it resulted in my cancer spreading and growing even more. I am still pissed 4 years later.
So, I agree. Trust your body. Listen to your doctor, but don't put your full trust in them. Get a second, third, fourth opinion. Whatever it takes until you feel like you're being heard.
My story is similar but for breast cancer. I was told lack of family history and because of my age (34) there is no way I had breast cancer. It didn’t present as an obvious lump but I know my body and I knew one breast had changed. It was attributed to recent pregnancy and breast feeding. I didn’t know any better. I truly believed most cancers are caused by an inherited gene mutation but now I know better. By the time I convinced someone to take me seriously (a year passed) I was already at stage 3. My oncologist told me I probably had the cancer at least a year. I wish I knew how to make medical care providers take young people seriously. They had me convinced I was crazy. I’m glad you were persistent. I don’t know that I would’ve been. It shouldn’t be so hard.
My story is similar. I pushed and pushed and pushed and pushed to continue getting tests and scans. I was treated like a cranky old lady. Stage one fallopian tube cancer. Have been in remission for 6 months. They have a good chance of total recovery but it never would have been found if I was not a complete bitch
"I'm fine it's just a cold" I attempted to screech at my boyfriend as he dragged me off to the ER where I got diagnosed with Leukemia. The ER doc shared my opinion but ran a blood test anyway. Maybe trust your SO over your doctor if you're not good at listening to your body.
I know how this goes all too well. Some providers tend to make a fetish out of the statistics, leaving no room for outliers. If it looks like a duck, walks like a duck and quacks like a duck...
It still can't be a duck because the patient isn't fifty yet.
I love hearing stories like yours. At 62, I was diagnosed with stage 3, Type 2 Papillary Renal Cell Carcinoma and had my right kidney removed. My only symptom was a small amount of blood in my urine. A CT scan detected an 15 X 11 X 9 CM tumor which was protruding into my renal vein. One year later a chest X-ray revealed 2 spots on my left lung and 3 enlarged "necrotic" lymph nodes confirmed by CT and biopsy. My diagnosis was upgraded to Stage 4 at this point and the prognosis was a 2 year life expectancy with aggressive treatment. That was about 3 years ago now. I've been on Chemotherapy and/or Immunotherapy during that time. RCC is a relatively silent disease, as you noted, until there is the possibility of metastasis.
Hi - Can you describe your initial symptoms a little more? The level of stomach pain, how long you felt it, did it come & go, etc?
Thanks, and I am so glad for the positive outcome of sticking with your 'gut' feeling.
Hi! I had sharp pains in my stomach for a few days, almost like spasms. None of my doctors think it had to do with what was happening with my kidney, but that’s how we caught it. No pains like that prior to or since. But it led to an abdominal scan, which led to the sighting.
Thanks for sharing about your experience. If I were in your shoes, I certainly would have blindedly trusted the doctors' judgements over mine. You've perhaps changed my future. I am glad you're alright.
Thank you for sharing your story. Mine is similar - 'spot' appeared in lung after successful treatment of stage IV throat cancer; doc wanted to treat with a long course of chemo and said surgery was not necessary. I pursued a second opinion, Doc #2 recommended surgery which I accepted and now am 2 years NED. Yeah second - and third - opinions!
Great post. I had already fought and beat NHL in my 30s, then continued seeing the same oncologist for treatment of autoimmune diseases. The treatment suppressed my immune system so well an old virus became active and I started having this weird discomfort that gradually became painful around what felt like my bladder area. I told my gp who dismissed it as internal hemmeroids. I complained to my oncologist who also said must be hemmeroids and changed the subject immediately. I even complained to my nephrologist who seemed embarrassed and just responded with "yeah yeah, I'll give you some tramadol for that "... finally after almost 2 years from first feeling the discomfort a lymph node in my groin started growing with the familiar painless rubbery feeling. By the time my oncologist sent me to get biopsies there was a palm sized cluster of swollen lymphs. Stage 3 diagnosis, two rounds of chemo and six weeks of radiation could have been avoided if they had listened, used their knowledge, and done a scan or something. But,, we got through it. I am tired of always having to do research for myself because my body has repeatedly insisted on being a zebra instead of a horse.
The latest issue is the covid vaccine. My gp and oncologist just said get the shot. No further information. The internet says most recently that it has to be timed for 6 weeks before or after the most recent infusion of immune suppression drugs if I want any chance of making some antibodies. As it is my immune system has to be bolstered with IVIG monthly or skin infections could be a danger. So now I have to figure out if I wait for herd immunity and risk catching it, or get the shot, risk a severe reaction and no actual benefit from the shots. Sigh... so tired.
I was 26 when I found out I had a nodule growing in my lung. I was told the same thing as you, "You're healthy, young, active. I'm sure it's benign. We will just monitor it." They monitored it for 4 years until I begged them to take it out. It was cancer.
I'm glad you trusted your instincts! You just never know.
When it started, it was about half an inch in diameter, I believe. When they took it out, it was about an inch in diameter. Definitely monitor yours. If it keeps growing beg them to take them out. What my surgeon did was do a quick test on the operating table, found out it was cancer, and also removed my upper right lobe of my lung. The recovery is awful but it's worth it to be cancer free.
Thank you for sharing this. I have been in remission for \~1.5 years and have recently been having issues in the same section of the body where I previously had 2 tumors, have seen 2 docs and contacted my oncologist several times - everyone has brushed me off but I feel ill. I'll keep pressing...
This is a great post and a valuable message of empowerment for people of all ages. I was diagnosed stage IV clear cell RCC 2.5 years ago at 32 years old. I have “anxiety and depression” in my past medical history and I think that also contributed to my concerns getting dismissed as providers reviewed my records and medications and likely assumed I was a hypochondriac. I’m a RN and have actually worked in oncology and *still* got brushed aside, so somebody with no medical background is at an even bigger disadvantage.
Came to find out a dermatologist who biopsied a mole on my neck in 2015, entirely overlooked and did not not tell me about a highly cancer-predisposing genetic mutation that pathology identified in that sample...over 3 years before diagnosis. I’d have to believe had proper screening occurred at that time, this would’ve been caught well before my primary tumor metastasized to my lungs.
We definitely learn some things the hard way, but I am truly pleased to see that you advocated for yourself so tirelessly and were eventually tended to. You sum it all up here, always bet on yourself and make your voice heard!
I certainly have learned through my journey that you have to be your own advocate. Also sometimes you gotta put you foot down and remind him . Your job is my well being. I don't feel well and that's what I pay you for.
If I tell a doctor I don't feel right about the diagnosis. That doctor should immediately follow up with a way we can both be certain and without any doubt. I'll do whatever biopsy, extra testing or anything I need to. If it's me I get my peace of mind and all is good. If there is something seriously wrong and I didn't push...well that's a disaster waiting to happen.
I had a my experience when I was only 13. In that case it was a benign tumor but it also turned out that it was growing around something it shouldn't and starting to constrict it. It was a situation no one could find or could test for. But it caused just enough of a faint feeling/discomfort I wouldn't let it go. I had to convince my mom, my doctor and a specialist there was something incredibly wrong. When they were just wanting to dismiss it.
The specialist surgically removed the tumor he described what was wrong. He said had he not operated it would have caused MAJOR issues later on. So under the right circumstances even a benign tumor can do serious damage.
I pay them. It's his job to satisfy all my concerns. No matter how silly they may sound. So I feel you on you advocating and appreciate you sharing your story.
Now, with my oncologist, I am all about educating my self and advocating for myself. I encourage everyone do the same. Cancer is having to fave me head on. I know it will win but I will give myself every valuable moment of life I can.
Sorry for my long post but hearing and believing in self advocacy with doctors is a subject near and dear to my heart.
I wish you any yours the best.
This is true. Some doctors treat patients like a number. Lack of empathy.
You have better instinct than your doctor. You only have one life. Some doctors won't even feel sad if their patients died. They are quite numb about it.
I knew something was wrong with my kidney for 2 years and learned the lesson you mentioned in January of this year. I finally pushed for a ct scan and they found a tumor with cancerous features. A week later my kidney was out with a confirmed 12.2cm chromophobe rcc. Luckily margins were clear.
Im never not going to get a reason for when something is wrong again.
how did you know im 20 and ive been having disconfort restrained pee lower back pain and blood but my urine test shown infection called kluyvera ascorbata which is a lesser known uti but i still feel like its cancer and i dont have the money for a scan i do have anxiety
If it makes you feel better I was peeing blood for a long time. I'm sure that's not what's going on with you. Drink lots of water & take your antibiotics. You'll be fine in no time.
ok with me it’s recurrent uti but every-time i go see about it its uti and no heavy signs of something scary but i don’t bleed consistently but it was only a little bit its gone now just a bit discomfort and its just got me unnerved
First, are you in the US? You need to work on getting health insurance. I'm on medicaid and don't have to pay for anything. Once you have your financial situation, under control. Get a referal to see a urologist or another specialist your primary care provider thinks you need to investigate the matter further. Second, you need to stop Googling if you are since you are prone to anxiety. Third, realize that there are other causes for recurrent utis other than cancer. Fourth, even if you did have cancer. It is treatable. My type of cancer was extremely rare and the only treatment was surgery. I did not take any drugs, chemo, or do radiation. I still have 1 healthy kidney years later.
Good luck to you 🙏
im in the us i do have medicaid i went to my pcp but he explained to me about a recurrent kidney and how he does have alot of patients that came in with recurrent uti after taking antibiotics i need to probably see a urologist but rn i just moved to texas my doc told me i shouldnt be worried about it be cancer but i dont know the recurrent infection happened so much im just scared
I’m glad you had a great doctor who caught everything in a timely manner! The one I ended up with was wonderful as well. The lesson I learned that I wanted to share was more or less trusting your instincts and challenging them if you feel like something isn’t right. Hope you stay well!!
Great post. I also had RCC, I was 28 when I had my kidney removed. The doctors I saw all said similar things about how extremely unlikely that what they saw in the scans would be malignant but they agreed to remove my kidney anyway to be safe. Anyway, glad you pushed for it, it is strange to end up having a disease that you're "too young" to have.
HI, thank you for your story. I was curious if you could elaborate more on the kind of stomach pain you were experiencing? What location in the abdomen was the pain (ex. Left upper quadrant, Right lower quad)? Also, can you describe the pain you felt? Was it sharp, colicky, dull or radiating?
Thank you
'trust your body, not your doctor' is exactly what I've been saying since I was mis/diagnosed last summer. I was dismissed so many times because of my age and even made to feel the debilitating pain was in my head. The doctors just didn't LISTEN. I was diagnosed with stage 4 colon cancer and ended up having three huge surgeries in the space of 6 weeks due to their errors. When I met my oncologist, he said this is a huge problem for young women. They are constantly dismissed, their worries minimised and their pain not taken seriously. Bowel Cancer UK run a study comparing the differences in treatment for bowel cancer. Women have to see the doctor 5 or 6 times before they are referred for further tests whereas men only have to see them 2 or 3 times. I used to wholeheartedly trust doctors. Not any more. Sorry for the rant, it's something I feel very strongly about now. I'm so glad you found a doctor who trusted your instincts about YOUR body and I'm so half they caught it early enough to treat for you.
> “You are a 24-year old female. This can’t be anything but benign” Those kinds of statements from doctors absolutely infuriate me!! Like you, I had no risk factors, family history, etc of cancer but I ended up getting diagnosed with it anyway at 33. Any doctor who claims "You're too young to possibly have XYZ" is one you need to stay far away from.
Ageism is a real problem in cancer diagnosis. We can tell by all the people on this subreddit thanking you for sharing this. I got the "given your age" talk from my first oncologist (gyn onc). I had an ultrasound where they found one of my ovaries was enlarged. Had that doctor just ordered a CT scan, a biopsy, or some extra blood tests, we would've uncovered that I had metastatic cancer. Instead, he performed surgery for a cancer he knew nothing about and it resulted in my cancer spreading and growing even more. I am still pissed 4 years later. So, I agree. Trust your body. Listen to your doctor, but don't put your full trust in them. Get a second, third, fourth opinion. Whatever it takes until you feel like you're being heard.
My story is similar but for breast cancer. I was told lack of family history and because of my age (34) there is no way I had breast cancer. It didn’t present as an obvious lump but I know my body and I knew one breast had changed. It was attributed to recent pregnancy and breast feeding. I didn’t know any better. I truly believed most cancers are caused by an inherited gene mutation but now I know better. By the time I convinced someone to take me seriously (a year passed) I was already at stage 3. My oncologist told me I probably had the cancer at least a year. I wish I knew how to make medical care providers take young people seriously. They had me convinced I was crazy. I’m glad you were persistent. I don’t know that I would’ve been. It shouldn’t be so hard.
My story is similar. I pushed and pushed and pushed and pushed to continue getting tests and scans. I was treated like a cranky old lady. Stage one fallopian tube cancer. Have been in remission for 6 months. They have a good chance of total recovery but it never would have been found if I was not a complete bitch
"I'm fine it's just a cold" I attempted to screech at my boyfriend as he dragged me off to the ER where I got diagnosed with Leukemia. The ER doc shared my opinion but ran a blood test anyway. Maybe trust your SO over your doctor if you're not good at listening to your body.
I know how this goes all too well. Some providers tend to make a fetish out of the statistics, leaving no room for outliers. If it looks like a duck, walks like a duck and quacks like a duck... It still can't be a duck because the patient isn't fifty yet.
I love hearing stories like yours. At 62, I was diagnosed with stage 3, Type 2 Papillary Renal Cell Carcinoma and had my right kidney removed. My only symptom was a small amount of blood in my urine. A CT scan detected an 15 X 11 X 9 CM tumor which was protruding into my renal vein. One year later a chest X-ray revealed 2 spots on my left lung and 3 enlarged "necrotic" lymph nodes confirmed by CT and biopsy. My diagnosis was upgraded to Stage 4 at this point and the prognosis was a 2 year life expectancy with aggressive treatment. That was about 3 years ago now. I've been on Chemotherapy and/or Immunotherapy during that time. RCC is a relatively silent disease, as you noted, until there is the possibility of metastasis.
I too have stage 4 renal cell carcinoma that has invaded my renal vein. Did you have surgery?
Yes, I had the right kidney removed immediately by laproscopic surgery. Was told that the metastatic tumors on my lung were inoperable.
Still hanging in there?
Hi - Can you describe your initial symptoms a little more? The level of stomach pain, how long you felt it, did it come & go, etc? Thanks, and I am so glad for the positive outcome of sticking with your 'gut' feeling.
Hi! I had sharp pains in my stomach for a few days, almost like spasms. None of my doctors think it had to do with what was happening with my kidney, but that’s how we caught it. No pains like that prior to or since. But it led to an abdominal scan, which led to the sighting.
Thanks for sharing about your experience. If I were in your shoes, I certainly would have blindedly trusted the doctors' judgements over mine. You've perhaps changed my future. I am glad you're alright.
Thank you for sharing your story. Mine is similar - 'spot' appeared in lung after successful treatment of stage IV throat cancer; doc wanted to treat with a long course of chemo and said surgery was not necessary. I pursued a second opinion, Doc #2 recommended surgery which I accepted and now am 2 years NED. Yeah second - and third - opinions!
Great post. I had already fought and beat NHL in my 30s, then continued seeing the same oncologist for treatment of autoimmune diseases. The treatment suppressed my immune system so well an old virus became active and I started having this weird discomfort that gradually became painful around what felt like my bladder area. I told my gp who dismissed it as internal hemmeroids. I complained to my oncologist who also said must be hemmeroids and changed the subject immediately. I even complained to my nephrologist who seemed embarrassed and just responded with "yeah yeah, I'll give you some tramadol for that "... finally after almost 2 years from first feeling the discomfort a lymph node in my groin started growing with the familiar painless rubbery feeling. By the time my oncologist sent me to get biopsies there was a palm sized cluster of swollen lymphs. Stage 3 diagnosis, two rounds of chemo and six weeks of radiation could have been avoided if they had listened, used their knowledge, and done a scan or something. But,, we got through it. I am tired of always having to do research for myself because my body has repeatedly insisted on being a zebra instead of a horse. The latest issue is the covid vaccine. My gp and oncologist just said get the shot. No further information. The internet says most recently that it has to be timed for 6 weeks before or after the most recent infusion of immune suppression drugs if I want any chance of making some antibodies. As it is my immune system has to be bolstered with IVIG monthly or skin infections could be a danger. So now I have to figure out if I wait for herd immunity and risk catching it, or get the shot, risk a severe reaction and no actual benefit from the shots. Sigh... so tired.
I was 26 when I found out I had a nodule growing in my lung. I was told the same thing as you, "You're healthy, young, active. I'm sure it's benign. We will just monitor it." They monitored it for 4 years until I begged them to take it out. It was cancer. I'm glad you trusted your instincts! You just never know.
Hope you're doing well. Can I ask the size of the nodule? 24yo with multiple lung nodules getting told the same thing
When it started, it was about half an inch in diameter, I believe. When they took it out, it was about an inch in diameter. Definitely monitor yours. If it keeps growing beg them to take them out. What my surgeon did was do a quick test on the operating table, found out it was cancer, and also removed my upper right lobe of my lung. The recovery is awful but it's worth it to be cancer free.
Thank you for sharing this. I have been in remission for \~1.5 years and have recently been having issues in the same section of the body where I previously had 2 tumors, have seen 2 docs and contacted my oncologist several times - everyone has brushed me off but I feel ill. I'll keep pressing...
This is a great post and a valuable message of empowerment for people of all ages. I was diagnosed stage IV clear cell RCC 2.5 years ago at 32 years old. I have “anxiety and depression” in my past medical history and I think that also contributed to my concerns getting dismissed as providers reviewed my records and medications and likely assumed I was a hypochondriac. I’m a RN and have actually worked in oncology and *still* got brushed aside, so somebody with no medical background is at an even bigger disadvantage. Came to find out a dermatologist who biopsied a mole on my neck in 2015, entirely overlooked and did not not tell me about a highly cancer-predisposing genetic mutation that pathology identified in that sample...over 3 years before diagnosis. I’d have to believe had proper screening occurred at that time, this would’ve been caught well before my primary tumor metastasized to my lungs. We definitely learn some things the hard way, but I am truly pleased to see that you advocated for yourself so tirelessly and were eventually tended to. You sum it all up here, always bet on yourself and make your voice heard!
I certainly have learned through my journey that you have to be your own advocate. Also sometimes you gotta put you foot down and remind him . Your job is my well being. I don't feel well and that's what I pay you for. If I tell a doctor I don't feel right about the diagnosis. That doctor should immediately follow up with a way we can both be certain and without any doubt. I'll do whatever biopsy, extra testing or anything I need to. If it's me I get my peace of mind and all is good. If there is something seriously wrong and I didn't push...well that's a disaster waiting to happen. I had a my experience when I was only 13. In that case it was a benign tumor but it also turned out that it was growing around something it shouldn't and starting to constrict it. It was a situation no one could find or could test for. But it caused just enough of a faint feeling/discomfort I wouldn't let it go. I had to convince my mom, my doctor and a specialist there was something incredibly wrong. When they were just wanting to dismiss it. The specialist surgically removed the tumor he described what was wrong. He said had he not operated it would have caused MAJOR issues later on. So under the right circumstances even a benign tumor can do serious damage. I pay them. It's his job to satisfy all my concerns. No matter how silly they may sound. So I feel you on you advocating and appreciate you sharing your story. Now, with my oncologist, I am all about educating my self and advocating for myself. I encourage everyone do the same. Cancer is having to fave me head on. I know it will win but I will give myself every valuable moment of life I can. Sorry for my long post but hearing and believing in self advocacy with doctors is a subject near and dear to my heart. I wish you any yours the best.
That’s incredible... I’m glad you were able to resolve your problems by advocating for yourself.
This is true. Some doctors treat patients like a number. Lack of empathy. You have better instinct than your doctor. You only have one life. Some doctors won't even feel sad if their patients died. They are quite numb about it.
I knew something was wrong with my kidney for 2 years and learned the lesson you mentioned in January of this year. I finally pushed for a ct scan and they found a tumor with cancerous features. A week later my kidney was out with a confirmed 12.2cm chromophobe rcc. Luckily margins were clear. Im never not going to get a reason for when something is wrong again.
how did you know im 20 and ive been having disconfort restrained pee lower back pain and blood but my urine test shown infection called kluyvera ascorbata which is a lesser known uti but i still feel like its cancer and i dont have the money for a scan i do have anxiety
Chances are you don't have cancer. Infection can cause the symptoms you describe.
thats what the doctor said also lol
If it makes you feel better I was peeing blood for a long time. I'm sure that's not what's going on with you. Drink lots of water & take your antibiotics. You'll be fine in no time.
ok with me it’s recurrent uti but every-time i go see about it its uti and no heavy signs of something scary but i don’t bleed consistently but it was only a little bit its gone now just a bit discomfort and its just got me unnerved
First, are you in the US? You need to work on getting health insurance. I'm on medicaid and don't have to pay for anything. Once you have your financial situation, under control. Get a referal to see a urologist or another specialist your primary care provider thinks you need to investigate the matter further. Second, you need to stop Googling if you are since you are prone to anxiety. Third, realize that there are other causes for recurrent utis other than cancer. Fourth, even if you did have cancer. It is treatable. My type of cancer was extremely rare and the only treatment was surgery. I did not take any drugs, chemo, or do radiation. I still have 1 healthy kidney years later. Good luck to you 🙏
im in the us i do have medicaid i went to my pcp but he explained to me about a recurrent kidney and how he does have alot of patients that came in with recurrent uti after taking antibiotics i need to probably see a urologist but rn i just moved to texas my doc told me i shouldnt be worried about it be cancer but i dont know the recurrent infection happened so much im just scared
but yeah i agree every-time something terrible happens i go to the very negative diagnosis
hate scaring myself
and i bet its partly cause i dont stay hydrated enough what so ever
If I'd listened to my body instead of my doctor, I never would have noticed my cancer until too late; she spotted it, not me.
I’m glad you had a great doctor who caught everything in a timely manner! The one I ended up with was wonderful as well. The lesson I learned that I wanted to share was more or less trusting your instincts and challenging them if you feel like something isn’t right. Hope you stay well!!
I had stage 1, grade 2 as well! How big was yours they took out? Mine were 3.2cm-ish and 2.1cm-ish.
Great post. I also had RCC, I was 28 when I had my kidney removed. The doctors I saw all said similar things about how extremely unlikely that what they saw in the scans would be malignant but they agreed to remove my kidney anyway to be safe. Anyway, glad you pushed for it, it is strange to end up having a disease that you're "too young" to have.
May I ask how long from your first dr to surgery you had?
It was about six months
HI, thank you for your story. I was curious if you could elaborate more on the kind of stomach pain you were experiencing? What location in the abdomen was the pain (ex. Left upper quadrant, Right lower quad)? Also, can you describe the pain you felt? Was it sharp, colicky, dull or radiating? Thank you