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murielm99

(31,433 posts)
Wed Nov 22, 2023, 03:39 PM Nov 2023

Things are not great.

The lung tumor has shrunk and the oncologist is now scheduling my scans six months apart rather than three. I thought things were going great. I kept telling him there was blood in my sputum. He wasn't worried. Then he told me to see the pulmonologist if I had concerns. She might tell me there was nothing to worry about.

I went to see her. She is worried. The tumor has definitely shrunk, but there is moisture underneath it, at the bottom of my lung. This is in my lower left lobe, down near the bottom. The tumor was only 1B, with no lymph node involvement. Stereotactic radiation seemed the best way to go. I have not had chemo. Pulmonologist says tumor could be growing. I don't have enough lung capacity to tolerate a resection or a removal of the tumor. I guess it would be chemo, if I need further treatment. I don't know for sure.

I am having a THIRD bronchoscopy after Thanksgiving. I will let you know. I am scared and angry. Cancer sucks.

I was diagnosed last August. I thought I still had time left in my life. I am 75, but I still have things to do.

51 replies = new reply since forum marked as read
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Things are not great. (Original Post) murielm99 Nov 2023 OP
Please keep us posted, dear murielm99. calimary Nov 2023 #1
Thank you. murielm99 Nov 2023 #2
Healing thoughts Laurelin Nov 2023 #3
I don't know what to say except I feel awful for you. riversedge Nov 2023 #4
Good luck. multigraincracker Nov 2023 #5
Setbacks with cancer treatment sucks, but I see opportunities for treatment based on hlthe2b Nov 2023 #6
Thank you. murielm99 Nov 2023 #8
Sending vibes from Canada. applegrove Nov 2023 #7
Hugs Duncanpup Nov 2023 #9
Cancer is evil. It is such a fight. Hugs and strength to you. BoomaofBandM Nov 2023 #10
Hugs and vibes. Cancer sucks. n/t ms liberty Nov 2023 #11
Sending positive vibes your way, muriel. sheshe2 Nov 2023 #12
Sending you all the good vibes and good wishes I have, muriel. brer cat Nov 2023 #13
Holding you in my heart for healing and strength, muriel. You are not alone. n/t TygrBright Nov 2023 #14
I'm sorry XanaDUer2 Nov 2023 #15
Sending hugs and healing vibes to you. virgdem Nov 2023 #16
Hugs and peaceful vibes to you. onecaliberal Nov 2023 #17
That really is scary. I hope the first doc is correct, but admire (as I would do) seeking other opinions. Evolve Dammit Nov 2023 #18
As a C survivor, I can relate Fritz Walter Nov 2023 #19
Your post is reassuring. murielm99 Nov 2023 #25
Sending you strength & best wishes now. Pls. stay in touch. appalachiablue Nov 2023 #20
Hang in there, sending healing thoughts to you. My BFF is 5 years cancer free last week. Ziggysmom Nov 2023 #21
Warm hugs to you muriel99. I can't imagine the anxiety you're going through. Fla Dem Nov 2023 #22
I'm guessing this is a non small cell cancer Warpy Nov 2023 #23
It is non small cell cancer. murielm99 Nov 2023 #41
(((hugs))) Muriel. Sending you good vibes that you beat this. sueh Nov 2023 #24
Sending good vibes your way...wish I had more!! PortTack Nov 2023 #26
You're worth every feeling, and every effort to still do things. Sending you hugs and heartfelt wishes for your ancianita Nov 2023 #27
All I can say is that cancer sucks. COL Mustard Nov 2023 #28
It does suck. LoisB Nov 2023 #29
Sounds like you're being emotionally healthy BaronChocula Nov 2023 #30
All my very best vibes to you! DarthDem Nov 2023 #31
You will be in my prayers LetMyPeopleVote Nov 2023 #32
Holding you in the light! It does suck, but you are amazing! n/t KatK Nov 2023 #33
Cancer does suck! SouthernDem4ever Nov 2023 #34
Sending healing vibes cate94 Nov 2023 #35
I prayed for you. God bless. Stay strong. Joinfortmill Nov 2023 #36
My dear muriel UpInArms Nov 2023 #37
Cancer DOES suck. All you can do is what you're doing. DFW Nov 2023 #38
I will hang on to what you said about your wife. murielm99 Nov 2023 #40
The second time she was diagnosed, she was warned that this form of cancer was known as "the murderer." DFW Nov 2023 #42
Please do let us know - holding you in my heart Goddessartist Nov 2023 #39
I'm so sorry you have to deal with this... CaptainTruth Nov 2023 #43
Can feel for you BigOleDummy Nov 2023 #44
I did this to myself, too. murielm99 Nov 2023 #45
I'm sorry you are going through this. pandr32 Nov 2023 #46
Thanks for sharing! Hope all goes well-- keep us posted. Paz. RestoreAmerica2020 Nov 2023 #47
Immunotherapy? Taraman Nov 2023 #48
I turned that down, murielm99 Nov 2023 #49
I've had to reject several docs as well, but have an excellent one now. Taraman Nov 2023 #50
That is wonderful. murielm99 Nov 2023 #51

calimary

(84,306 posts)
1. Please keep us posted, dear murielm99.
Wed Nov 22, 2023, 03:46 PM
Nov 2023

We’re all pulling for you, and waiting for updates from your journey.

Keep visualizing the color green. Green symbolizes health, vitality, Spring, new growth and renewal and rebirth.

HUGS-HUGS-HUGS!!!

hlthe2b

(106,328 posts)
6. Setbacks with cancer treatment sucks, but I see opportunities for treatment based on
Wed Nov 22, 2023, 04:00 PM
Nov 2023

what you have said and what your pulmonologist is reporting. So, hold on to that, please

You are in my thoughts, hopes, and well wishes.

sheshe2

(87,464 posts)
12. Sending positive vibes your way, muriel.
Wed Nov 22, 2023, 04:22 PM
Nov 2023

You are a strong woman however we are here for you every step of the way.💙

Evolve Dammit

(18,603 posts)
18. That really is scary. I hope the first doc is correct, but admire (as I would do) seeking other opinions.
Wed Nov 22, 2023, 05:18 PM
Nov 2023

Sincerely hope you get some positive vibes and results in the very near future. Take care

Fritz Walter

(4,349 posts)
19. As a C survivor, I can relate
Wed Nov 22, 2023, 05:18 PM
Nov 2023

Went through a similar ordeal 4 years ago. Even got to ring the bell at the treatment center. Getting there was a challenge, including a botched Bronchoscopy.
I’m basically on the same follow-up schedule: CT every 6 months. Last one showed the “ground glass” tissue in that lung has dissipated.

I’m grateful and glad that they caught the tumor early. And that I had access to some quality care.

Hang in there!
🥰

Ziggysmom

(3,569 posts)
21. Hang in there, sending healing thoughts to you. My BFF is 5 years cancer free last week.
Wed Nov 22, 2023, 05:29 PM
Nov 2023

After Thanksgiving we are both getting tattoos that say "Fuck Cancer". I'm 64 and getting my first tattoo. This I actually want on my body and want to tell the world.

FUCK CANCER! May it go away like smallpox and become something future generations only read about.


Fla Dem

(25,679 posts)
22. Warm hugs to you muriel99. I can't imagine the anxiety you're going through.
Wed Nov 22, 2023, 05:42 PM
Nov 2023

All the best to you. I hope you have family and/or good friends to lean on as you go through this ordeal.

Warpy

(113,130 posts)
23. I'm guessing this is a non small cell cancer
Wed Nov 22, 2023, 05:49 PM
Nov 2023

so let's hope when they do the bronchoscopy they just finds some damaged blood vessels in the area and cauterize them.

Cancer sucks. If you weren't frightened and angry, you'd be crazy.

murielm99

(31,433 posts)
41. It is non small cell cancer.
Thu Nov 23, 2023, 08:05 AM
Nov 2023

My lung capacity is reduced because of the stereotactic radiation. It fried a lot of healthy cells around the tumor and I have a lot of shortness of breath that I did not have before. That area of my lung may never recover.

I hope you are right about the damaged blood vessels. I will do what the doctors recommend.

Thanks for your support.

ancianita

(38,514 posts)
27. You're worth every feeling, and every effort to still do things. Sending you hugs and heartfelt wishes for your
Wed Nov 22, 2023, 06:21 PM
Nov 2023

improvement, murielm99.

This medical machinery can't help if it doesn't know where to help, so hang with them and never be afraid to ask questions, even of the technicians, and demand honesty and their best opinions.

Try to consider every new day in between as one where you enjoy the world, those whose companionship you value, and where you have the chance to do at least one one thing you still want to do.

We're here. Not going anywhere.

LoisB

(8,639 posts)
29. It does suck.
Wed Nov 22, 2023, 06:25 PM
Nov 2023

I am going to hope for good news from the pulmonologist. Please keep us up to date. Hugs.

BaronChocula

(2,517 posts)
30. Sounds like you're being emotionally healthy
Wed Nov 22, 2023, 06:28 PM
Nov 2023

by allowing yourself to feel your feelings. Hope you find a way to laugh here and there. And hope you find a way to enjoy your Thanksgiving.

DarthDem

(5,361 posts)
31. All my very best vibes to you!
Wed Nov 22, 2023, 06:39 PM
Nov 2023

You're such a great and valued poster here. You got this!! All the best.

UpInArms

(51,793 posts)
37. My dear muriel
Thu Nov 23, 2023, 04:46 AM
Nov 2023

I wish I could be there with you to give you support and hugs.

But, all I can do is send you virtual (((((hugs))))) and say how much I admire you and your wisdom and strong heart. You are definitely not finished and I hope that whatever treatments you endure, give you many more years.

💕💕💕🫂🫂🫂

DFW

(56,514 posts)
38. Cancer DOES suck. All you can do is what you're doing.
Thu Nov 23, 2023, 05:28 AM
Nov 2023

See people who know about it, get advice, hope that the advice isn't overly contradictory, and try to tough it out.

Both of my parents had cancer and so did ALL of their siblings. I already lost a cousin to brain cancer (à la McCain and Teddy Kennedy) at age 41. With me, it's not "if" but "when." I'm in no hurry.

My wife has already had it twice. She beat it both times, even though the second time, it was one of those "always fatal" versions. She was that one in ten thousand for whom it wasn't. Here's hoping your physicians find a way to put you in that category, too.

murielm99

(31,433 posts)
40. I will hang on to what you said about your wife.
Thu Nov 23, 2023, 08:00 AM
Nov 2023

I hope she stays healthy, and you too!

Thank you for your encouragement. Thanks to all the supportive DU members.

DFW

(56,514 posts)
42. The second time she was diagnosed, she was warned that this form of cancer was known as "the murderer."
Thu Nov 23, 2023, 09:38 AM
Nov 2023

It is rare, only strikes women who are elderly (she was 64 at the time) or very slender. At 5'10" and 130 pounds, she qualified. It is classified as "always fatal," with maybe on in ten thousand surviving it. My wife's diagnosis was by pure accident, just a tiny spot with zero manifestations. The reason it is called the murderer is that it is completely silent. By the time it shows, it is too late.

With my wife, it was three tiny spots on her uterus during a routine exam due to some tiny bleeding. The doctors said they were too tiny to be anything significant, but since she had already had cancer once (breast cancer at age 49), they'd biopsy the three spots just to be absolutely sure. On a woman with no cancer history, they probably wouldn't even have bothered. Two of the spots were indeed nothing, but the third one turned out to be The Murderer.

She was sent immediately to a specialty clinic that fortunately happened to be right here in Düsseldorf. We talked with the surgeon, who told us flat out that the murderer usually always claimed its victim, but he also said that he had NEVER seen it in this early a stage. They did a 5½ hour operation that left her in such pain when she woke up, she made liberal use of a spinal infusion of morphine any time she pressed the button. They only left that in a couple of days to prevent risk of infection. In such operations, they apparently usually take 10-15 biopsies to see if the cancer has spread, and if so, where. In her case, they took 84 biopsies (!!!). It took three days to get the results, but ALL 84 came back negative, something he said he had never seen before. The surgeon called us in, and gave us his opinion. He said usually a round of chemo was standard, but he thought that after the operation and the biopsy results, he thought that this one time, he had really gotten it all. He said it was her/our option, but this one time, he said he thought no chemo would make a difference. She remembered how awful the chemo was after her breast cancer, and said she was willing to take the risk, if he thought it was 50-50 that it would make no difference. That was 7 years ago, and she feels and looks fabulous for someone who is 71 and has had cancer treatment twice. She looks fabulous even for someone who is 71 and has had nothing at all.

So, while everyone is different, and I hope I can put up such a show of fortitude when it's my turn, she is a shining beacon for what can happen if you at least give yourself a chance in your own mind. I hope you have a few similar rabbits in your own hat, even if you have to scrounge around for them. Always keep a few carrots around just in case.

Goddessartist

(2,067 posts)
39. Please do let us know - holding you in my heart
Thu Nov 23, 2023, 07:53 AM
Nov 2023

Sending lots of love and positive vibes to you murielm99!

BigOleDummy

(2,274 posts)
44. Can feel for you
Thu Nov 23, 2023, 09:47 AM
Nov 2023

While I don't have cancer yet I do have severe copd and its affiliated curses. Last biopsy was ok and the cysts in my lungs ,at least the BIG one was shrinking. Moved my cat scans back to every 6 months from 3 too. My supplemental oxygen is steadily increasing. Getting tired of hauling that damn oxygen bottle around lol. Worst part for me is knowing I did this to myself. At least yours isn't that. Hey, take all the solace you can.
Hoping for you!

murielm99

(31,433 posts)
45. I did this to myself, too.
Thu Nov 23, 2023, 10:03 AM
Nov 2023

I smoked for a long time. I quit many times, and finally scared myself out of it a few years ago. I am told that the tumor has been there for a long time. One day, it just woke up and decided to grow.

pandr32

(12,165 posts)
46. I'm sorry you are going through this.
Thu Nov 23, 2023, 10:56 AM
Nov 2023

Please try to involve yourself in the holiday season as much as you can. My hope is that it will brighten things for you some.
I hope your Thanksgiving is a pleasant one, and shared with loved ones.
I also wish your next scan shows no growth.

Taraman

(398 posts)
48. Immunotherapy?
Thu Nov 23, 2023, 02:54 PM
Nov 2023

I hope you qualify for the new immunotherapy treatments, like atezolizumab. It seems to be a game changer for adenocarcinoma lung cancer. Minimal side effects.

murielm99

(31,433 posts)
49. I turned that down,
Thu Nov 23, 2023, 03:04 PM
Nov 2023

shortly before the doc involved with it told me I was not eligible because of my ambivilance.

He was a shit who seemed to believe the p.r. stuff about doctors being gods. He did not care about me. I did not seem to be a person to him, only another statistic or number for his trials.

Taraman

(398 posts)
50. I've had to reject several docs as well, but have an excellent one now.
Thu Nov 23, 2023, 03:14 PM
Nov 2023

I was 2B. Had a lobe removed. Just finishing a year's worth of immunotherapy infusions. Cancer free now.

murielm99

(31,433 posts)
51. That is wonderful.
Thu Nov 23, 2023, 03:44 PM
Nov 2023

The pulmonologist says I would not tolerate a lobe removal or resection. I don't know where we go from here.

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