Remission: I just read in a post in a... - SHARE Metastatic ...

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Remission

tessibop2002 profile image
20 Replies

I just read in a post in a support group that im in on facebook that there is no such thing as remission for stage 4, is that true? I dont think it is, I thought my oncologist said we are trying to put you into remission on my first visit. Has anyone else had a remission?

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tessibop2002 profile image
tessibop2002
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20 Replies
Joan37 profile image
Joan37

I think that it's just a matter of semantics, although I'm not exactly sure what remission means these days. I guess back in the day, it meant that the cancer went away, but I'm not sure whether that referred to early or advanced cancer, or both. Today, we seem to favor, N.E.D., or no evidence of disease, which seems like the same as remission. I believe your oncologist like most wants to make your tumors disappear, regardless of the terminology. However, although stage 4 is treatable, it's not curable :(( even if the tumors disappear for a time.

tessibop2002 profile image
tessibop2002 in reply toJoan37

also mine was stable at one point for a while, that is good too, I think your right, the N.E.D. may be the new term for remission

Kats3 profile image
Kats3

Hi tessibop2002,

I agree with Joan37. Stage 4 can at some time show NED, with the cancer cells being quiet and no progression is seen on scans.

Funny though, my Oncologist last year told me that I was having a "partial remission." I was surprised by those words. He had me take a 2- week break from my chemo pills at that point. Then, I was back on them again. Yes, I think it's a matter of what type of vocabulary is used. I think the NED phrase says it the clearest.

Then again, miracles do happen and who knows? A complete remission could be had, even for Stage 4.

With us, I think our focus should be to hope and pray that our cancer stays stable AND treatable. I'd be happy with that!! Kats3

tessibop2002 profile image
tessibop2002 in reply toKats3

me too

Jan_Schnabel1 profile image
Jan_Schnabel1 in reply totessibop2002

Me three.

PatSailsbery profile image
PatSailsbery

I am Stage 4 and was in "remission" for about 18 months. My oncologist used this verbage: "the cancer is sleeping". I'm back on chemo and she said hopefully we'll put the cancer back to sleep.

Kats3 profile image
Kats3 in reply toPatSailsbery

I love the way your Oncologist put that! Let the cancer sleep for a long long time! Your doctor has a great attitude. It gives us all hope to hear it put that way. Best wishes, Kats3

ArizonaGramma profile image
ArizonaGramma in reply toPatSailsbery

I would agree with that term "sleeping" too. Because the cancer is already in the blood and it manifests in other parts of the body when it wakens again we pray that it is an area that can now be targeted with the correct chemo cocktail to put it back to sleep. So the time in between the stages is sleep time rather than cured or in remission. Love that.

monalbaki profile image
monalbaki

Scans don't show except larger tumors. Smaller scattered cancer cells cannot be detected by scans. The best that can be done for us is to make these sleep for as long as possible and to keep th from amalgamating in the form of a tumor that can damage organs.

monalbaki profile image
monalbaki

Fingers crossed and prayers for all of us.

dianeygirl profile image
dianeygirl

I have the NED diagnosis too. I feel better than I have in years! I hope we can keep this going!

tessibop2002 profile image
tessibop2002 in reply todianeygirl

dianeygirl

Congrats to you, where was your cancer located and how long have you been NED?

dianeygirl profile image
dianeygirl in reply totessibop2002

I'm almost 2 years out from Chemo. They found breast cancer in my ovary when I had a hysterectomy. I've had several surgeries including a mastectomy. So it's NED for a while!

tessibop2002 profile image
tessibop2002 in reply todianeygirl

dianeygirl

I had it on my ovaries too but they just removed the ovaries 3 weeks ago, I also have it on the lympth nodes on my chest wall and lympth nodes in my neck, so you mean you dont have to do any chemo or anything now that your NED?

KaerligMor profile image
KaerligMor

Bone mets here and while I'm technically dancing with NNED, there are two more small spots on my spine and the pain is somewhat managed. Could be better but I Hate the liquid morphine. Yuck!! Lol!

SDE59 profile image
SDE59

I think "holding it at bay" is more like it

Kathleen1999 profile image
Kathleen1999

I have been Stage IV Breast to Bone for over 18 years. My cancer has been well managed. Thus far I have been blessed.

ArizonaGramma profile image
ArizonaGramma in reply toKathleen1999

Thank you, I needed to hear that today.

ArizonaGramma profile image
ArizonaGramma

I was told there is no coming back from a Stage 4, but it is manageable. Originally I was diagnosed with Stage 2 breast cancer. After 16 weeks of chemo I noticed that my bloodwork never went back to a "normal" range. With CT scans nothing more ever showed up until four years later. Suddenly there's bone lesions and I am a stage 4. I opted out of Tamoxifen after a month of use because I felt like crap and didn't want to be sick for the next 5 years, so I wanted to monitor with blood work and see if CA numbers would change for the better or worse. Had they gotten worse there were the aromatase inhibitors I could take which all have the bone loss side effect. I already had osteoporosis diagnosed at an early age so I didn't do those drugs either. The blood cancer antigens remained stable, but still considered high. So I have to wonder about the term remission. I honestly don't think there is such a thing. Cancer is in the blood and travels to a new place in the body manifesting itself. So for myself, I have had four wonderful years following the worse year of my life with biopsy, surgeries, drainage tubes, anxiety attacks, losing my hair and the personality changes from chemo. Chemo drugs change a person, but it beats the alternative. As of now it is Ibrance (pills) and Letrozol which is moving the high cancer antigens down very quickly. I am guessing when I say remission would be the goal, but the term used by my doctor is "manageable".

ArizonaGramma profile image
ArizonaGramma

I was told no cure, but it is manageable and we are not at death's door. I have never had my breast cancer blood work return to what is read as a normal or less than number, or a cancer free, or even a remission as my tumor markers were always high even after 16 weeks of chemo and 33 radiations in seven spots. But they stayed consistent for a couple of years. So what was a stage 2 with stablazed high tumor markers is now a 4, but Ibrance and Letrozol are making those tumor marker numbers drop quickly. I don't know if they will ever go to no cancer detected, but am hoping. I was told it was arthritis in the bones and maybe some was, but not all. Less bone pain these days though.

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