Learning I had Stage 4 Cancer at 19 - Erin | Non-Hodgkin Lymphoma | The Patient Story 

What were your symptoms? How did they discover it?

@@brookesmith1550 I had a history of endometriosis. They did a pelvic ultrasound and found a mass which was very large and filled with hair and teeth. I guess that’s pretty common. It started to give me a lot of pain. That was basically it. When I went in for surgery, there was a very small risk of cancer; my CA-125 was 64. During the surgery, the pathologist called in that it was cancer, so they revised my surgery from a vaginal hysterectomy to opening me up and taking lymph nodes in addition to everything else. I was very lucky: 3 months earlier it wouldn’t have been found and three months later my organs would have shown signs of metastasis. I was just very, very lucky.

That’s wonderful! I wish you all the best.

I have lung cancer- could have been caught if they followed protocal for a smoker over 50- I had to fight for 9 months just to get a chest xray- it is criminal what some of these doctors do to people

The prob is for every one person that actually has cancer, 100 have come before with the same symptoms and don’t have cancer.

True! Also...how many times have we heard the phrase..."I had to ADVOCATE FOR MYSELF?" The medical care system in the western world(especially the U.S.)...is BROKEN!

I have Sjögren’s syndrome and after having it for many years, I now have have symptoms of Hodgkins. I’m not happy right now. My rheumatologist was the one who told me that I needed to see an hematologist, because my white blood cells are high and I’m on two immunotherapy. I see that hematologist next month.

It killed my brother, so it’s not “the one to get”

No cancer is the one to get. It's unnatural and devastating to any life.

@@duffystavern894 I'm sorry for your loss but it's very treatable and the treatment is mostly well tolerated

@@JJ-vy2rh , there are different types of lymphoma, some more treatable than others. My brother suffered terribly for 2 1/2 yrs, all the while being told “ no problem, we got this” & “this is an easy one, no worries”. His last option was Car-T, which failed. In the end, it was the treatments that killed him trying to get the cancer to back off some. Thank you for your condolences.

​I agree with your statement that it's not "the one to get". My father died from lymphoma that had metastasized throughout his body. After chemo and radiation had him in "remission", they still insisted on doing autologous bone marrow transplant on him. It took his immune system back to infancy, and when the cancer came back within weeks of the transplant, his body couldn't fight it off. The last couple of years of his life (age 62-65) he was constantly fatigued and in extreme pain from the treatments that didn't work for him. Btw, he was a Korean War Veteran in his 20's, a construction worker by trade, woodworking was his hobby, and he retired early to deal with his cancer.....so basically, he worked his ENTIRE life and never got to enjoy rest, travel, and enjoy family during his retirement. 😢 @@duffystavern894

Amen 🙏🏻✝️🙏🏻

I was very happily surprised when she said that.

I’m not the OP (obviously), but I am a breast cancer survivor. I’ve heard from many others who had Neulasta that it causes bone pain. I was lucky and didn’t need it during my chemo, as my white blood cells never went too low.

I knew it was an option but don’t know anything about it yet. I have been having low blood levels wbc, rbc, platelets, and specifically have crucially low absolute neutrophils. We don’t know why yet. I’m have to see hematology/oncology at the end of month. Thank you

@@heatherr1141 Thank you. I wish you all the best, and I hope it’s nothing serious and can be treated easily.

Me too. thanks

@@heatherr1141You’re most welcome.

I really wish there was an update for all of these stories.. These stories are so informative and you can’t help but wonder how they’re doing..

At least an update on those who are doing well. Possibly an annual memorial of those who'd passed away...but perhaps there's an understanding that these are standalone interviews with no followups?

@len6871 - do you mean how did they start her of IVF during the cancer treatment? Or did you mean something else? Just hoping to help you clarify your question as both a cancer survivor and a medical worker. X

are you doctor? Can I ask you some questions? (About colonic pain, but it's in the Lower side and kidney pain. ​@@erinwoolfrey7650

@@erinwoolfrey7650 Hallo Erin, sorry to hear you had to go through this, good to hear you survived. Thank you for your question sorry if was not clear. I ment indeed starting IVF (hormoon treatment) whilest having an hormonale cancer diagnose on your overies.( I had both too but years apart in reverse order) Pushing high dose of hormones in your body would not be an option here with a hormonen sensitive tumor. Aswell the IVF t reatment takes time that you dont have after diagnose. I was in surgery asap and treatment as soon the wounds alowed it. (and hasnt been a easy ride as you know.) Have a good day.

@len6871, hi there. There is no need to apologise at all. Communication can be hard when trying to ask questions in this sort of format! And it's a completely reasonable and understandable question that I hope I can give some insight into. incredibly nowadays, they do often do an 11-12 day IVF course for many hormone based cancers, including breast cancer and even ovarian cancer. There is a new medicine we can give that actually reduces the esterogen levels in your body while you do IVF unbelievably now! This is meant to help prevent rapid cancer growth because, as you rightly pointed out, it's a BIG danger and concern in hormone based cancers. Another option is, of course, having an ovary completely removed before you start chemo or radiation and then trying to grow the eggs in a lab - though this isn't very successful. But it HAS worked! a third option we often see is where they MOVE your ovaries up higher in your belly so no radiation directly hits them - amazing, isn't it?! This is commonly used when radiation is the primary treatment course. And finally another common move is to GIVE a shorter course of hormone treatment as in around a week - or less in some cases- and take a piece of ovary out and remove the eggs in the lab to get them to develop further. Several hundred babies have been born thru this method, and yearly, the numbers continue to grow Finally, there is also an ovary protecting medication that we give to people in childbearing years that sends them into menopause. This protects their eggs from forming in a toxic environment, can help to protect the immature eggs for later pregnancy and is 100% reversible once you not longer need to protect your eggs you stop the medicine and your body in no longer in menopause. This is also very commonly used nowadays for many types of cancer. But as earlier said, it's not ever a onesize fits all issue. If your hormones have stopped due to the cancer, there are limited options. If they can't ensure your hormones can be reasonably managed for the 2 week window needed for IVF, that means you have less options. If your cancer is too advanced or you are too young or nearing the natural end of your hormone production you have less options - or less success at least. As with all issues that cancer touches, no one's story is the same and there is no blanket treatment. Everyone in this horrific situation has their own care plan designed for them, as you well know, and that's based solely on YOUR individual case, teat results, blood work ups , cancer type and cancer progression. And of course, your own personal choices and personal situation. I'll link an amazing article on this whole topic for you to look at if you would like- if not, no offence at all. I just find it amazing how far we seem to come year after year. 5 years ago, many of these options didn't exist or weren't even considered for any people. How far we have come hey?! Now we just need a cure for cancer and we'd all be happier and healthier!! All this said, if you are too young and aren't going thru a regular menstruation , none of this is an option except surgical replacement of your ovaries higher up in your belly. Likewise, if you are deemed to be too old, despite still having a regular period, the team may say this isn't possible. And thirdly, if you have an aggressive cancer and simply need urgent treatment and they can't buy you 12 odd days for an IVF cycle, then tragically there is little that can be done except immediately start the fight to keep you alive. Every country has different criteria for who qualifies for each treatment, age cut off's, disease progression timelines and different finical requirements for these treatments. It is NOT cheap if you're in a country like the US that doesn't cover these measures on almost any insurance provider. In Australia where I am, this treatment is most covered by our government funded health care system. And I thank God for that because otherwise I couldn't have thrown away almost 15g on the spot to do this treatment . Argh! I'm so sorry to read that you too have a personal experience with this dreadful disease and have experienced the post treatment pregnancy minefield. I can only hope your experiences was as ' easy' and successful as is possible when dealing with issues of this nature? I hope you are well and may you stay that way forever!! I hope this helped to explain some of the methods used and available today in the US, UK and Australia at least? If you have any more questions, pls feel free to ask and I'll do my best to explain the process and I know it!

@@erinwoolfrey7650 wow what a knowlege you have. Thank you Erin! For me personally it has no use any more. IVF was fruitless and later after diagnose all was taken out. So yeah..life itself becomes very presious. But with all your information I hope to help others that have a chance to preserve the chance for a natural family. I am very gratefull for your insight and hope you share this way. So gratefull. With gratitude Len. (glad to be alive)

Amen

Amen 🙏🏻✝️🙏🏻

Why do so many people ask this in the comments? Not only is it rude, they never answer. Over 60% of the population is fully vaxxed, including young people. Why do you need people to verify what you know is true? Do you just want to rub it in their face? If that's the case, you need to get help. Do you really think most people would've taken it had they had informed consent? Anyone who's been paying attention knows about P53 suppression and Pseudouridine in the vax.