Recurrence to Lungs

Cler
Cler Member Posts: 26
in Uterine/Endometrial Cancer #1
Hello,

If anyone has had mets to their lungs please could you share the treatment option you went for? And, of course, how it worked for you.

I had my first recurrence in a lymph node under my right arm in January. I had total axillary clearance surgery and cancer was found in just one node and all other tissue clear.

Today, I returned from my CT Scan results with a 8mm lesion on my right lung. It's too small to biopsy so can't be confirmed as mets to lung yet. I have another scan in 4 weeks to see if it's grown - if so, it's certainly mets.

I'm not sure what else it could be. Has anyone experienced a strange lesion on their lung which wasn't cancer? If so, please ease my mind!

If it's another isolated recurrence it will most likely be surgically treated or with radiation (traditional approach or cyber knife etc) rather than chemo. If more mets show up in 4 weeks then chemo may be an option - though I recurred originally whilst having chemo so I am essentially chemo refractory. Things are not looking good for me tonight. Recurring twice with a three month gap between seems pretty hopeless so I am worried at this rate I'm not even going to see my 40th birthday. Very sad and very frightened. This thing seems out of control now.

(Background - 34 years old, hysterectomy May 2010, followed by carbo / taxol and Brachytherapy. 1st recurrence January 2011. Second possible recurrence April 2011. No husband, no kids, a bit too young to cope with all this to be honest! Really wishing for a cure in the face of something I understand is 100% incurable.)

Cler x

Comments

  • MarieA
    MarieA Member Posts: 18
    #2
    Just hello and prayer
    I just joined this site, am diagnosed with endometrial cancer. I have not even had my surgery yet , but you will be in my prayers. I have a nephew who at 16 was diagnosed and is now 36 and cancer free, his mother my sister also has lesions on her lung which they determined to be non malignant, she is checked every three months or so.
    I was very touched by your blog, having two daughters about your age. Keep your strength up and fight this battle, God will be with you and I will definitely be praying for you. Many Blessings!
  • Aderyn
    Aderyn Member Posts: 18
    #3
    Incurable does not equal lethal
    I can't take credit for this perspective, I read it on this board and unfortunately do not remember who posted it, but she said she was advised to view her cancer as a chronic condition that will always need to be managed but is not necessarily fatal. Kind of like having diabetes -- not a good thing, not something you want, and not something that will leave your health unscathed, but not necessarily something you're going to die from, either. It sounds as if you are managing it well, getting the information you need and doing what needs to be done. I can't blame you for wishing for a cure, me too, but if not a cure, at least we can wish for good management.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4
    Cler x sorry about your second recurrence
    You will remain in my prayers. My recurrence has been in the lymph nodes, so I don't have any experience with lung tumors. I have read a lot about the cyber knife. It has been successful for many. I hope they find a successful treatment for you. I am sorry you are facing this alone. It would be a lot to cope with. This site is a good place to come and express your concerns and anxieties. In peace and caring.
  • nempark
    nempark Member Posts: 681
    #5
    Cler!!!!!
    So sorry to hear about your recurrences. Please talk to us so you can get some relief. The sisters on this board is very knowledgeable and supportive. I don't know what else to say. I feel your fears. What I can tell you is that Our Great Creator will not give you more than you can bear. Look into the scriptures in your Bible and you will certainly get some comfort. In the mean time, it does seem like you are doing some good research. I send you a big hug and wish that I can hug and squeeze all those bad cells out of you. My best wishes and comfort comes your way!!!! june
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #6
    nempark said:

    Cler!!!!!
    So sorry to hear about your recurrences. Please talk to us so you can get some relief. The sisters on this board is very knowledgeable and supportive. I don't know what else to say. I feel your fears. What I can tell you is that Our Great Creator will not give you more than you can bear. Look into the scriptures in your Bible and you will certainly get some comfort. In the mean time, it does seem like you are doing some good research. I send you a big hug and wish that I can hug and squeeze all those bad cells out of you. My best wishes and comfort comes your way!!!! june

    8 mm is still too small to be reliably diagnosed on a PET even.
    8 mm is tiny tiny. I read an article (posted it on here somewhere!) that PET scans were only reliable at diagnosing whether a lesion is cancerous 97% of the time for spots larger than 1 cm (10 mm); but at smaller than 10 mm false-negatives and false-positives were as high as 51% when biopsies were later done for confirmation. You may stil be okay.

    I remember a CT scan reading once where a 'suspicious' shadow on my lung was marked by the doctor reading the scan. My radiation oncologist was clearly angry and said "This is just a C.Y.A. move in case something ever shows up there; I don't see anything suspicious there at all. All this does is worry a patient for months until their next scan." & he was right. I've never had a recurrence in my lungs.

    So please try not to worry or jump the gun in getting back into treatment again. ((((Cler)))))
  • Cler
    Cler Member Posts: 26
    #7
    lindaprocopio said:

    8 mm is still too small to be reliably diagnosed on a PET even.
    8 mm is tiny tiny. I read an article (posted it on here somewhere!) that PET scans were only reliable at diagnosing whether a lesion is cancerous 97% of the time for spots larger than 1 cm (10 mm); but at smaller than 10 mm false-negatives and false-positives were as high as 51% when biopsies were later done for confirmation. You may stil be okay.

    I remember a CT scan reading once where a 'suspicious' shadow on my lung was marked by the doctor reading the scan. My radiation oncologist was clearly angry and said "This is just a C.Y.A. move in case something ever shows up there; I don't see anything suspicious there at all. All this does is worry a patient for months until their next scan." & he was right. I've never had a recurrence in my lungs.

    So please try not to worry or jump the gun in getting back into treatment again. ((((Cler)))))

    Thank you...
    Hello everyone,

    Thank you so much for writing to me. It is such a help to hear from women who are going through the same thing.

    i have just started a Mindfulness meditation course. It helps to try and focus on the now (I feel well, fit, no pain) and not what the future will bring too much. As you say, it may be nothing. I really hope so...

    Cler
  • norma2
    norma2 Member Posts: 479
    #8
    Cler said:

    Thank you...
    Hello everyone,

    Thank you so much for writing to me. It is such a help to hear from women who are going through the same thing.

    i have just started a Mindfulness meditation course. It helps to try and focus on the now (I feel well, fit, no pain) and not what the future will bring too much. As you say, it may be nothing. I really hope so...

    Cler

    You are not alone....
    I am going through a tough time myself, honey. CA 125 went up to 41. I had a complete work up with CT Scans, X-rays, etc in Oct. All NED except for a pesky thing that showed up in the X-Ray. After examination it is a fungus in my lungs. The specialist at MDA said don't worry about treating it unless I have a recurrence of the uterine cancer. Having another CT Scan tomorrow and get the results on Wed. Scared out of my wits. I have been so happy with being NED for a year and 3 months. Praying for a positive result. I am praying for you too, sweetie. I think like it was said this is kind of like a chronic condition. Keep treating the symptoms. Keep fighting.
  • DaughterNo1
    DaughterNo1 Member Posts: 14
    #9
    Lung Mets
    My 78 year old mom has UPSC. She had the same course of treatment as you 3 years ago, then liver & gall bladder surgery to remove mets and those have not returned. However, last year a PET/CT showed a small (9-11mm) mets on her lung. It was removed laprascopically (thru small incision) by an amazing surgeon, Dr. Robert McKenna, at Cedars Sinai in Los Angeles.

    She had follow up chemo (Doxil) that was not effective. Two new spots showed up this year on both her lungs and she is currently receiving Cisplatin once a month for 6 months. THe platinum based chemo was successful before and we are hopeful that it will again be effective o the lung mets, getting rid or decreasing the spots. You are young so your treatment options are even better. Don't give up, my mother's oncologist has many UPSC uterine cancer patients who have been in remission for over 12 years. Find the best doctors you can and review every treatment option - you have to be assertive and your own advocate sometimes but it is worth it! I wish you the best of luck.
  • Julie2009
    Julie2009 Member Posts: 4
    #10
    DaughterNo1 said:

    Lung Mets
    My 78 year old mom has UPSC. She had the same course of treatment as you 3 years ago, then liver & gall bladder surgery to remove mets and those have not returned. However, last year a PET/CT showed a small (9-11mm) mets on her lung. It was removed laprascopically (thru small incision) by an amazing surgeon, Dr. Robert McKenna, at Cedars Sinai in Los Angeles.

    She had follow up chemo (Doxil) that was not effective. Two new spots showed up this year on both her lungs and she is currently receiving Cisplatin once a month for 6 months. THe platinum based chemo was successful before and we are hopeful that it will again be effective o the lung mets, getting rid or decreasing the spots. You are young so your treatment options are even better. Don't give up, my mother's oncologist has many UPSC uterine cancer patients who have been in remission for over 12 years. Find the best doctors you can and review every treatment option - you have to be assertive and your own advocate sometimes but it is worth it! I wish you the best of luck.

    Lung Nodule
    Hi,
    On a three month check up, they found two nodules in my lungs. I have to have CT scans every 4 months to check for growth. I am happy to say that they have not grown. My Dr. Said you can get nodules from being sick with the flu, pneumonia etc. I hope this eases your mind.
  • Cler
    Cler Member Posts: 26
    #11
    Julie2009 said:

    Lung Nodule
    Hi,
    On a three month check up, they found two nodules in my lungs. I have to have CT scans every 4 months to check for growth. I am happy to say that they have not grown. My Dr. Said you can get nodules from being sick with the flu, pneumonia etc. I hope this eases your mind.

    Hi,
    Thanks to everyone who
    Hi,

    Thanks to everyone who messaged me. I kept reading your messages over and over when I got scared and when I just couldn't sleep for worrying.

    Had my CT scan results this past week and the lung nodule has shrunk from 8mm to just 2mm so it wasn't a 2nd recurrence!!

    I do have a lump just above my left armpit. Axillary lymph nodes were clear in the scan so this lump is a little odd as it's more towards the top of my arm. Anyone ever had a recurrence in a limb?!? Will have biopsy and ultrasound in the next few weeks to see what's going on.

    I know this is just a small victory when it comes to UPSC and because I have this small lump in my arm I can't really write that I'm NED but this is the closet I've been since my diagnosis last year. And I can look forward to a summer with no treatment which is so precious.

    Anyway, thank you for your messages. It really helped through the scary times!

    Cler
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #12
    Cler said:

    Hi,
    Thanks to everyone who
    Hi,

    Thanks to everyone who messaged me. I kept reading your messages over and over when I got scared and when I just couldn't sleep for worrying.

    Had my CT scan results this past week and the lung nodule has shrunk from 8mm to just 2mm so it wasn't a 2nd recurrence!!

    I do have a lump just above my left armpit. Axillary lymph nodes were clear in the scan so this lump is a little odd as it's more towards the top of my arm. Anyone ever had a recurrence in a limb?!? Will have biopsy and ultrasound in the next few weeks to see what's going on.

    I know this is just a small victory when it comes to UPSC and because I have this small lump in my arm I can't really write that I'm NED but this is the closet I've been since my diagnosis last year. And I can look forward to a summer with no treatment which is so precious.

    Anyway, thank you for your messages. It really helped through the scary times!

    Cler

    Cler
    Fellow UPSC sis here. So happy that things are better for you and no recurrence in lungs. Hang in there.. I've got my fingers crossed that all will show NED and you will be dancing throughout summer and beyond!!!

    Mary Ann
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #13
    daisy366 said:

    Cler
    Fellow UPSC sis here. So happy that things are better for you and no recurrence in lungs. Hang in there.. I've got my fingers crossed that all will show NED and you will be dancing throughout summer and beyond!!!

    Mary Ann

    Lump in arm
    Dear Cler-
    Can't comment on the lung thing, but I have a lump in my upper right arm (arm not axilla). I don't have UPSC (I had endometrial cancer), but a lump is a lump is a lump and this happens to be the same side that I had breast cancer. So I was really upset. When I made my appointment it was for a "lump under my arm". It is, but my doc was really concerned until I explained it was my arm, not underarm. She was pretty sure it was a lipoma or fibroma but sent me off to have an ultrasound primarily to get a baseline size. Ultrasound report says "appearance favoring lipoma". The CYA part says "other possiblilites cannot be completely excluded" which I think is there simply because of my history of breast cancer. This was in February and there has been no change in that lump, so I'd venture to say it's a lipoma and I've stopped checking it every day.

    We all worry about everything and every lump and bump and ache and pain. It's great to have this board to bring that worry to. Such a group of wise women.

    Here's what my breast surgeon told me about my obsession of self breast exams 10 times a day (ok, I'm exaggerating). He said he likes to tell his patients that cancer growth is like children. When you're the parent and see them everyday, you don't notice their growth until you have to buy them new clothes. But when you're the grandparent and see them occasionally, their growth is immediately apparent. I presume that holds true with almost any lump and is pretty consistent with repeating your lung scan a month later, and not immediately trying to treat it. Much easier for them to wait than you, tho. So happy it was smaller!

    I'm so sorry you have to experience this at such a young age.

    Best,
    Suzanne
  • Cler
    Cler Member Posts: 26
    #14
    Double Whammy said:

    Lump in arm
    Dear Cler-
    Can't comment on the lung thing, but I have a lump in my upper right arm (arm not axilla). I don't have UPSC (I had endometrial cancer), but a lump is a lump is a lump and this happens to be the same side that I had breast cancer. So I was really upset. When I made my appointment it was for a "lump under my arm". It is, but my doc was really concerned until I explained it was my arm, not underarm. She was pretty sure it was a lipoma or fibroma but sent me off to have an ultrasound primarily to get a baseline size. Ultrasound report says "appearance favoring lipoma". The CYA part says "other possiblilites cannot be completely excluded" which I think is there simply because of my history of breast cancer. This was in February and there has been no change in that lump, so I'd venture to say it's a lipoma and I've stopped checking it every day.

    We all worry about everything and every lump and bump and ache and pain. It's great to have this board to bring that worry to. Such a group of wise women.

    Here's what my breast surgeon told me about my obsession of self breast exams 10 times a day (ok, I'm exaggerating). He said he likes to tell his patients that cancer growth is like children. When you're the parent and see them everyday, you don't notice their growth until you have to buy them new clothes. But when you're the grandparent and see them occasionally, their growth is immediately apparent. I presume that holds true with almost any lump and is pretty consistent with repeating your lung scan a month later, and not immediately trying to treat it. Much easier for them to wait than you, tho. So happy it was smaller!

    I'm so sorry you have to experience this at such a young age.

    Best,
    Suzanne

    Hi,
    thanks for taking the
    Hi,

    thanks for taking the time to write. My lump is in the under arm region but right at the edge of this area. I looked up both lipoma and fibroma which don't sound scary at all so that is a good thing to hold onto now!

    My Ct Scan last week did check the axilla nodes under my arm and they said these look clear. I may have a weird node higher up than normal however so it can't be ruled out yet. Tomorrow is the biopsy and the results in 2 weeks so I'll know then.

    At least I had one week of feeling almost like I achieved NED. Even 'almost NED' was a pretty good feeling!

    Thanks!
    Cler
  • california_artist
    california_artist Member Posts: 816 Member
    #15
    ah, never mind

    ah, never mind

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