It took Me YEARS to get a Cancer Diagnosis | Leanne's Lymphoma Story | The Patient Story

I first reported a rash on my arms to my local GP surgery 2 and a half years before I was finally diagnosed with Stage 4 Hodgkin's Lymphoma. I was told over and over again that it was eczema or that I was allergic to sunlight! Even the dermatologist didn't pick it up! Eventually I developed lumps on my legs called Erythema Nodosum, which prompted a chest X-ray. The results of the chest X-ray revealed a shadow on my lungs. The CT scan revealed enlarged lymph nodes in my chest and neck, the biopsy revealed Hodgkin's Lymphoma and the PET scan revealed that I was Stage 4 and that the cancer had spread to the edge of my lungs!! I had 6 months left to live before I started chemotherapy, and I'm just coming to the end of my treatment. Thank you for sharing your story. It's shocking how these things are not picked up soon enough. We need more stories like this to bring about positive change.

It is very rare to find a good doctor these days. I had balance issues, falling over, headaches and I went to five different doctors, emergency room and a specialist and was told to lose a couple of kilos, it was psychological and everything in between. I told them I thought I had a brain tumour and asked for an MRI. I was fobbed off every single time. It took nine months to get that MRI only because I refused to leave the hospital without one. I was then diagnosed in a few hours but the damage had been done. I put in a complaint to the Medical authorities and was told in writing "we don't like to punish doctors". So the patient has no hope. We shouldn't have to be going for second, third and fourth opinions at our expense. Doctors should just do their job and not think they are God's gift to the human body. I was a Registered Nurse in theatre and I have no faith in the medical profession. I have seen in all.

That trainee was an angel! I am so sorry for your suffering💔 I too am a cancer survivor❤️

I could really relate with your story. I have NonHodgkin Lymphoma, Mantle Cell, which was diagnosed in 2015. Our medical care in the States has become a nightmare. I’m mostly ignored by my GP and Rheumatologist. My cancer isn’t curable and now I am 71 years old. I see the difference in how I’m treated. Each doctor wants to send me to a specialist for every little problem. I have become a different person. I will see my oncologist in a couple of weeks and am expecting another CT scan. I pray you have a long life and can beat this insidious disease. It’s a journey and it’s not easy. 😊🙏🌸

My mother was totally dismissed by her doctor over and over. He told her that her symptoms were menopause. She deteriorated over a year or so. pain sent her too emergency. It was a young intern who gave her an ultrasound and found advanced lymphoma. Get second opinions until you are satisfied

So glad she mentioned the cost of all the tests as not all could afford to keep digging for further answers …

I'm so GLAD that you finally got answers! My husband was first diagnosed with Follicular Lymphoma when he was 55 years old. He had a lump just in front of his right ear. The dr performed surgery and as soon as he opened his face up he saw that it was cancer. So they did a biopsy of what they removed at he was told it was Follicular Lymphoma. They did a full body scan and said at that time they were just going to wait and see because they didn't want to start cancer treatment until it started to be aggressive. In no time it had changed to aggressive B-cell and told him he had to have treatment right away. His treatment was "CHOP". He had to be hospitalized because the treatment was so brutal. They also wanted him to have a stem cell transplant. He said no. My husband survived the treatment and was told he was in remission. Now my husband is 78 years old and 3 years ago he was diagnosed with F. L. again. And they told him he probably had it for at least 3 years. His symptoms started out as an annoying cough that wasn't productive at all. He was in the middle of changing doctors so here in America you go to Urgent care and are seen by whatever doctor is on duty at the time. They kept diagnosing him with pneumonia and would give him meds and he would go home. After the 4th time of going to Urgent Care, I went with him and told the doctor that he doesn't have pneumonia which is what he tried to tell us he had...again. I said he needs to see a specialist, something is wrong! The doctor said, well an Urgent Care doctor really doesn't have any pull with specialists. I said please try! So he stood there and typed a note to a pulmonologist. My husband was finally contacted by a Pulmonologist's office and an appointment was made. As soon as he pulled up his xrays he said no, he's never had pneumonia. He said I bet your Follicular Lymphoma is back. He had 2 large tumors right behind his esophagus and had closed off his right lung. My husband was NEVER told that there isn't really a cure for FL and that you will have to keep going back for "maintenance" when the cancer starts to grow again. His treatment was Retuximab and Revlimid for the last 3 years. He is finished with his treatment and is doing great. We have to trust ourselves and realize that we know our bodies. When something feels wrong we have to be insistent with these doctors. !

This makes me so tearful. Thank you for sharing your story. My father recently passed from Stage 4 cancer. He had been going to doctor after doctor and it was not detected.

So sorry .My wife went through the same thing and Passed away 3 months ago and it tore my heart apart God bless you .Stay strong

It’s taken me 5 years to finally get my diagnose. I tried to tell them, the Doctors. Over and over. I finally had a bronchoscopy and biopsy. And I was right. Cancer. It’s now spread to my sinus and brain. I just sent my doctor an email saying, I told you. 😞

I'm shocked to see so many in the comments with the same story 😳

I hope someday someone writes a book with our stories, (not only cancer it happens with many illnesses). I hope someday doctors can understand us and don't dismisse us and we can get the right diagnosis and have hope. They make mistakes and we can't do anything but live in pain and being treated like if we were crazy or depressed. Blessings 🙏🏼🕯️

Very articulate well spoken thank you Leanne. Im so sorry to hear how difficult for you to finally be diagnosed. I’m so glad the GP was empathetic and apologized I believe you taught him more then medical school textbooks could ever had.

My two young sisters past of skin cancer and the other ovarian cancer. My father past of colon cancer and my mother had breast cancer but died of a broken heart. I have monoclonal gamapathy pre-cancer and my wife has multiple myeloma. There is something seriously wrong in our societies! We all know what the problems are but its easier to focus on saving the planet by changing from plastic straws to paper straws. My deapest prayers to everyone here who suffers and has to fight.

My mum was misdiagnosed for years too, doctors giving her pills, eye drops, test after test only to tell her that there was nothing wrong with her..... 6 weeks later after getting a second opinion from a different doctor she was given 6 months to live because they found she had pancreatic cancer. She died exactly 6 months later Christmas night. NEVER stop looking for opnions, listen to your body and don't take no for an answer until you get to the root cause. You must advocate for yourself, you have everything to lose. I'm so happy for Leanne that she finally got her diagnosis and treatment and that her recovery will be flawless with a very long and healthy life ahead of her.

My daughter. Was diagnosed with non.hodkins lymphoma aged 26 right out of the blue after tonsillitis for the 5 time in 8 moths .... then breathless. Diagnosed in a and e there and then. Massive shock ...didn't go home for 3 moths from that day . Only after an x ray by an astute doctor .. only to find a large mass in her chest.... after 6 rounds of chemo 3 years down the line now. Still all good . Lymphoma notoriously difficult to diagnose. Big hugs. And very much found your explanation very interesting. Thanks. And hope you keeping well. 🤗

My husband ran across this story and it just really really hit home for things I have been going through the last 3 yrs. He showed it to me, reluctantly, because he didn’t want to scare me. There are SO many similarities. But I told him, I don’t think I have cancer. But if I do, at least there will be an explanation. So it doesn’t scare me. It does the opposite. It’s giving me the courage to keep on searching for answers and not just accept the unknown. So thanks so much for sharing this story. I do hope I can find some answers. I am so tired of fighting an invisible monster. Thank you 🙏🏼 And for this beautiful woman, I am so glad you are still here for your family. 🙏🏼🙏🏼🙏🏼

Wow! Identical stories here! Mine took 6 years to diagnose...lymphoma and metastatic cervical cancer...stage 4 ,but could have been prevented. I was told I was working too hard .which cause intense pain and I had " allergies" ..nope I had the coughing for several years too..

My PCP is overbooked, eyes stuck on his computer, fails to reply to anything I say, office staff all start a the front desk and are "promoted" to MEDICAL ASSISTANTS🙄 Mrs. MD works in the office, handling billing and very unfriendly. Lab results are never reported to the patient, unless by chance at a pending office appointment, or you call. This type of practice didn't exist decades ago, now it's common place. How many patients are falling through the cracks with missed signs of serious illness? Since the pandemic, things have only gotten worse. I'm truly unhappy, but fear that finding another MD will not make a difference.

Leanne, I'm so sorry you went through all of that but happy you are here to tell your story. Your story sounds very similar to my story but I'd already had a prior cancer dx with a different lymphoma 7 years before that. I KNEW there was something serious wrong with me because I'm a nurse and know my body extremely well. I was frustrated that I had to go through all the night sweats, relentless itching face and neck etc and exhaustion, horrible coughing, and brutal and worsening back pain and unable to sleep etc. My daughters, thankfully, called an ambulance for me due to the incredible pain I was suffering and wasn't sleeping because of the pain. After the ER visit, I was admitted and I had surgeries and so forth. It was a whirlwind of appointments and seeing an oncologist out of town, which was a challenge. After 8 R-CHOP tx, 2.5 years of chemo/cancer tx, I felt much better except for the long term side effects I will have to live with. I know I'll never be the same, but want to live until all my kids to get married and have their families, anyway. Message for everyone: TRUST YOUR GUT FEELINGS and DON'T GIVE UP! (especially if all tests haven't been done and/or you truly feel there's something very wrong!) Leanne, as you said in your video, "Advocate for yourself!" ❤