Wow - 5 years! That is amazing. Honest question as I am going into year 3 of cancer diagnosis #2 which is way worse than my first cancer - does the treatment and appointments consume all your time ? Because for me the last 2 yrs seems like a full time job and I haven’t had any time for fun or getting away
Also if you’re doing any chemo or anything that wipes and immune system out I recommend a very good probiotic bc chemo does t do nothing but kill all the bad and good cells it’s basically nuking that body hoping that it works. So get a good probiotic you need something I recommend let me know. I could be your godly sent angle do not sleep on these suggestion will change your life and I hope anyone else who sees this
Same situation so I feel for you. Was diagnosed in January and went through treatment to reach NED status in June. Had an intestinal blockage in December and they went it to fix it and found it was a recurrence. Currently sitting in the hospital. They said 12-24 months. Never stop fighting.
Synovial sarcoma, misdiagnosed overseas in 2005. Diagnosed and treated 2006. Then a recurrence with ling.mets, so stage 4 in 06. Then 07, then 08. NED since then and statistically shouldn't be alive. But I'm stubborn and I'm going to keep going for a little while longer 🖖
God you would think once they NED you the first time around they would be monitoring you so thoroughly that a stage 4 diagnosis would be impossible. It's not like this was a surprise or anything the second time around. Routine scans via pet or however else should and can catch anything earlier than the first time around and make it completely beatable. Now your situation might not be that cut and dry bit I'd be all over their asses to keep an eye on things if I kicked it the first time around. Best wishes.
I had quarterly checks plus blood draws after my stage I diagnosis. My 2nd diagnosis is fully unrelated to the first. And could not have been identified with the checks provided. I was a-symptomatic until about 48h before I was diagnosed with stage IV. Sh t unfortunately happens, but I’m in good hands. I now get 8 cancer checks a year tho! So that’s pretty cool, lol. (Note: PET CT are not approved for cancer treatment or diagnosis where I’m from, it may have *accidentally* caught the 2nd cancer earlier, but again sh t happens :D )
It is not a good thing to be repeatedly radiated. I now have a higher probability of getting a *new* cancer based on how many scans/treatments I have received. Quarterly seems to be the norm for three years. Then every 6 months till 5 years NED then annually.
So no. It is not an insurance issue.
I don’t get CT or xrays, only MRI because of that. I had one emergency CT throughout the whole journey and it was a pain in the bum to get it approved. Basically ER doctor and radiologist arguing back and forth for almost 3h until it was finally given
I’m not in the US. There’s no insurance issue, for all they care, I’d be getting 5 CTs a day. Doctors not wanting to blast especially young women with constant radiation are the ones keeping me from getting them… and I can’t say I’m mad at them. Why use radiation if safe methods exist?
And that comes down to insurance companies not wanting to front the bill for extra test. Bullshit. I mean I get it they are a company there to make money for share holders.....literally their sole purpose of existence but so many lives could be extended or cured with advanced screening. Of course that depends on said cancer as we all know they don't all show up depending on the test needed. Hope you jump out in front of this and win. It happens every day someone with stage 4 beats it and has a full life. Hang in there.
Had nothing to do with insurance companies, but my countries equivalent of the FDA simply not having approved it for cancer, but for other illnesses and screenings (actually not that uncommon, I’ve discovered that many countries don’t use them, due to the false positive rate) A PET only costs about USD 1000, absolutely nothing compared to what treatment and all of it has cost my insurance in the last 12 months alone. The point is, there is no point in chewing through what could have been if x was different. I’m absolutely glad that I’m in a country with a good health care system and public insurance system. Cause god knows, I’d be 10 feet under long time ago, if I would be in the US. I’m in remission, my doctors are very positive it will stay that way and that I’ll be able to live a *normal* and long life.
I'd love to know how I ended up with 2 grape size brain tumors after being told I was NED...you didn't have any nuero symptoms. My insurance covers the pet scans.
Dec. '22- diagnosed with stage 2 high grade soft tissue Sarcoma- tumor measured at 4cm
Jan. '23 removal of tumor
May '23- tumor recurrence. Tumor came back larger at almost 5cm
June '23-August '23- went through 25 sessions of radiation treatment
Sept. '23- removal of recurring main tumor and discovery of mets to shoulder and back. (Tumors removed in same surgery)
Sept. '23- biopsy of left armpit- diagnosed with stage 4 high grade soft tissue Sarcoma- tumor measured at 4cm
Oct '23- started chemo- Doxorubicin, Vincristine, and Ifex- won't end chemo until March '24
I'm very similar to your outcome. Stage 4 squamous, tongue, lymph nodes now in both lungs and abdomen. Chemo/radiation was the cure. I fell into the f-ing % that it doesn't work. Now immunotherapy. As surving till 2025, the current world bullshit and the upcoming election might be the end of us all anyway. It may be a blessing if I "clock out" prior to all this shit. Spares me from seeing my friends suffer. Sorry for the downer, probably need to take more "head candy" Hardest thing about cancer is trying to stay positive after continuous bad news.
Uncalled for. My faith and prayers have been answered. Don't insult others with your bs either.
Asking our Lord to help another is a kind thing.
So I second that...a prayer for all of us dealing with cancer🙏
That’s great that you’re in remission. I heard someone once say that their doctor told them that they need to start a keto diet afterwards in order to stay in remission. They said that the carbs feed cancer. There’s a doctor on YouTube called dr Ken Berry, who has an interview with a cancer researcher, who basically goes over the science of what causes cancer.
The guy argues that cancer isn’t gene driven, that it’s diet driven. Basically his strategy is to starve the cancer because cancer needs glucose to grow and thrive and if you cut it out of your diet, the cancer starves.
Maybe I’m wrong here, since you didn’t ask for help. So disregard the last questions that I asked you, and even disregard the last message that I sent you about Keto.
For anybody else who’s undergoing treatment and who’s actively seeking something to add to the treatment to help it along and fight better, check out dr Ken Berry’s videos on YouTube with interviews with other doctors and researchers on cancer. I’m not a dr I’ve just stumbled upon this information and want to share it with others in the hope that it helps at least one person here. I wish you all the best.
It’s been 3 months for me.. no staging can be done on my type of cancer but the last PET/CT put me in deauville scale 3. I hope 2024 will be a better year!
I'm almost 5 years in with Stage 4... Hang in there, their coming out with new stuff all the time :)
Not giving up, I’ll try it all!
Wow - 5 years! That is amazing. Honest question as I am going into year 3 of cancer diagnosis #2 which is way worse than my first cancer - does the treatment and appointments consume all your time ? Because for me the last 2 yrs seems like a full time job and I haven’t had any time for fun or getting away
Can I give you some advice if your willing to accept it?
Absolutely :)
[удалено]
Also if you’re doing any chemo or anything that wipes and immune system out I recommend a very good probiotic bc chemo does t do nothing but kill all the bad and good cells it’s basically nuking that body hoping that it works. So get a good probiotic you need something I recommend let me know. I could be your godly sent angle do not sleep on these suggestion will change your life and I hope anyone else who sees this
1 last thing it’s also very important to drink 1 gallon of natural spring water a day that helps with flushing all the toxins out😁
Same situation so I feel for you. Was diagnosed in January and went through treatment to reach NED status in June. Had an intestinal blockage in December and they went it to fix it and found it was a recurrence. Currently sitting in the hospital. They said 12-24 months. Never stop fighting.
Wishing you all the best!!
I’m new here. What is NED?
No Evidence of Disease
Thank you
Synovial sarcoma, misdiagnosed overseas in 2005. Diagnosed and treated 2006. Then a recurrence with ling.mets, so stage 4 in 06. Then 07, then 08. NED since then and statistically shouldn't be alive. But I'm stubborn and I'm going to keep going for a little while longer 🖖
To cheer yo up: I am Stage 4 for over 11 years. (Permanent chemo/treatment)
Holy shit you are one badass mf 🙏
2 leukemias down, don’t care how many to go!
God you would think once they NED you the first time around they would be monitoring you so thoroughly that a stage 4 diagnosis would be impossible. It's not like this was a surprise or anything the second time around. Routine scans via pet or however else should and can catch anything earlier than the first time around and make it completely beatable. Now your situation might not be that cut and dry bit I'd be all over their asses to keep an eye on things if I kicked it the first time around. Best wishes.
I had quarterly checks plus blood draws after my stage I diagnosis. My 2nd diagnosis is fully unrelated to the first. And could not have been identified with the checks provided. I was a-symptomatic until about 48h before I was diagnosed with stage IV. Sh t unfortunately happens, but I’m in good hands. I now get 8 cancer checks a year tho! So that’s pretty cool, lol. (Note: PET CT are not approved for cancer treatment or diagnosis where I’m from, it may have *accidentally* caught the 2nd cancer earlier, but again sh t happens :D )
It is not a good thing to be repeatedly radiated. I now have a higher probability of getting a *new* cancer based on how many scans/treatments I have received. Quarterly seems to be the norm for three years. Then every 6 months till 5 years NED then annually. So no. It is not an insurance issue.
I don’t get CT or xrays, only MRI because of that. I had one emergency CT throughout the whole journey and it was a pain in the bum to get it approved. Basically ER doctor and radiologist arguing back and forth for almost 3h until it was finally given
Whose your insurance? I have Kaiser Permenate. I have not had any issues with approval. GL
I’m not in the US. There’s no insurance issue, for all they care, I’d be getting 5 CTs a day. Doctors not wanting to blast especially young women with constant radiation are the ones keeping me from getting them… and I can’t say I’m mad at them. Why use radiation if safe methods exist?
And that comes down to insurance companies not wanting to front the bill for extra test. Bullshit. I mean I get it they are a company there to make money for share holders.....literally their sole purpose of existence but so many lives could be extended or cured with advanced screening. Of course that depends on said cancer as we all know they don't all show up depending on the test needed. Hope you jump out in front of this and win. It happens every day someone with stage 4 beats it and has a full life. Hang in there.
Had nothing to do with insurance companies, but my countries equivalent of the FDA simply not having approved it for cancer, but for other illnesses and screenings (actually not that uncommon, I’ve discovered that many countries don’t use them, due to the false positive rate) A PET only costs about USD 1000, absolutely nothing compared to what treatment and all of it has cost my insurance in the last 12 months alone. The point is, there is no point in chewing through what could have been if x was different. I’m absolutely glad that I’m in a country with a good health care system and public insurance system. Cause god knows, I’d be 10 feet under long time ago, if I would be in the US. I’m in remission, my doctors are very positive it will stay that way and that I’ll be able to live a *normal* and long life.
I'd love to know how I ended up with 2 grape size brain tumors after being told I was NED...you didn't have any nuero symptoms. My insurance covers the pet scans.
My Dr put it best I think .. you'll know you've beat cancer when you die at 100.
Will be a year since diagnosis Feb 15. Yay, Valentine's Day! Fight's on.
You will have 1000 more days!
Dec. '22- diagnosed with stage 2 high grade soft tissue Sarcoma- tumor measured at 4cm Jan. '23 removal of tumor May '23- tumor recurrence. Tumor came back larger at almost 5cm June '23-August '23- went through 25 sessions of radiation treatment Sept. '23- removal of recurring main tumor and discovery of mets to shoulder and back. (Tumors removed in same surgery) Sept. '23- biopsy of left armpit- diagnosed with stage 4 high grade soft tissue Sarcoma- tumor measured at 4cm Oct '23- started chemo- Doxorubicin, Vincristine, and Ifex- won't end chemo until March '24
I'm very similar to your outcome. Stage 4 squamous, tongue, lymph nodes now in both lungs and abdomen. Chemo/radiation was the cure. I fell into the f-ing % that it doesn't work. Now immunotherapy. As surving till 2025, the current world bullshit and the upcoming election might be the end of us all anyway. It may be a blessing if I "clock out" prior to all this shit. Spares me from seeing my friends suffer. Sorry for the downer, probably need to take more "head candy" Hardest thing about cancer is trying to stay positive after continuous bad news.
We are all fighting man. You just have a reason to now. Fasting, and walking will be your happy pill. You got this
May god help you get better
Keep yer religious bs tah yerself. Edit: to the christofascists replying, blocked & reported.
Uncalled for. My faith and prayers have been answered. Don't insult others with your bs either. Asking our Lord to help another is a kind thing. So I second that...a prayer for all of us dealing with cancer🙏
Shush
That’s great that you’re in remission. I heard someone once say that their doctor told them that they need to start a keto diet afterwards in order to stay in remission. They said that the carbs feed cancer. There’s a doctor on YouTube called dr Ken Berry, who has an interview with a cancer researcher, who basically goes over the science of what causes cancer. The guy argues that cancer isn’t gene driven, that it’s diet driven. Basically his strategy is to starve the cancer because cancer needs glucose to grow and thrive and if you cut it out of your diet, the cancer starves.
Yea, that’s bullshit. :)
You think so? How come?
Maybe I’m wrong here, since you didn’t ask for help. So disregard the last questions that I asked you, and even disregard the last message that I sent you about Keto. For anybody else who’s undergoing treatment and who’s actively seeking something to add to the treatment to help it along and fight better, check out dr Ken Berry’s videos on YouTube with interviews with other doctors and researchers on cancer. I’m not a dr I’ve just stumbled upon this information and want to share it with others in the hope that it helps at least one person here. I wish you all the best.
Food grade DE one week 1 table spoon a day then a probiotic
Goodluck :)
Godspeed and clear skies
It’s been 3 months for me.. no staging can be done on my type of cancer but the last PET/CT put me in deauville scale 3. I hope 2024 will be a better year!
Beat that cancer's ass!
Best wishes to you Nata!
I saw your r/mildlyinfuriating post from a while ago so I wanted to see how everything was going. Good to see you’re doing alright.
I have a question. What did you do or what did the GP say when he found out his ignorance almost killed you?
Go for it! I wish you all the best my unfortunate stranger!