Recurrence in my lungs

Pennielane
Pennielane Member Posts: 8
edited August 2017 in Uterine/Endometrial Cancer #1

i just joined this group, looking for some experience/advice. I was diagnosed with uterine cancer just about two years ago, my treatment was hysterectomy, cisplatin and radiation, then caboplatin/taxol six rounds. It was rough, but I have been feeling good since my treatment ended about 17 months ago. My ct scans have shown a few spots in my lungs that my went unchanged for a while so my dr said he would watch them but was not too concerned. Yesterday I learned that two of the nodules have changed and increased in size. He ordered another cat scan in 3 months. At this point I'm worried, and wondering why he isn't ordering a biopsy - this will be my 4th ct scan in less than a year, which I know isnt good for me either. I'm also wondering what the treatment will be - I guess I'm assuming there won't be surgery. Anyone been through something similar? It was adenocarcinoma, stage three.

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited May 2017 #2
    Pennielane, I don't have

    Pennielane, I don't have experience to help you with this but wanted to welcome you to the board.  It may be beneficial for you to get a second opinion. Just sitting and waiting is pretty darn scary! Sorry you are having to deal with this. The ladies here are incredible and I'm sure someone will be along shortly to offer you information.  Hang tough and we will be here for you.

    Love and Hugs,

    Cindi

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited May 2017 #3
    Welcome

    Welcome to the club no,one wants to belong to.  This is a great group of ladies with much information and a ton of support.  So sorry you are going through this.  Waiting for answers is so hard.  I don't have a lot of answers for you.  The only thing that I would suggest is asking for a second opinion.  It never hurts and may bring you some answers.

    Hugs and prayers, Lou Ann

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #4
    I am so very sorry that you

    I am so very sorry that you are going through this, Pennielane. You've come to the right place as there are others here who have had similar experiences who will certainly be willing to share their wisdom with you.

    Regarding your current doctor, is he a gyn-onc with a lot of experience treating your type of diagnosis? Is he part of a large cancer center? What grade was your tumor? Has it been sent for genetic testing? There are so many new types of therapies out there now but they tend to be more effective on certain gene mutations.

    More than anything, try to stay hopeful. I wish you the very best of luck. Keep us posted on how you are doing. Kim

  • Pennielane
    Pennielane Member Posts: 8
    #5
    more info

    In answer to some of the questions -- yes, my dr is a gyn-onc with an excellent reputation and with a large and v good cancer center. I like him and trust him. I was tested and do not have Lynch syndrome, I think that was the extent of the genetic testing that was done. My tumor was grade two. After speaking with my dr today I am feeling better about this - he says the two spots they are watching are too small for biopsy or pet scan, so ct scan is the best way to watch them for now. They are growing very slowly (2mm to 4mm to 6mm for the larger one), so he doesn't think it's a malignancy, but it is possible they are. Better than not watching I guess. It is hard to live with the dark ominous unknown all the time. sigh.

  • pinky104
    pinky104 Member Posts: 574 Member
    #6
    Pennielane said:

    more info

    In answer to some of the questions -- yes, my dr is a gyn-onc with an excellent reputation and with a large and v good cancer center. I like him and trust him. I was tested and do not have Lynch syndrome, I think that was the extent of the genetic testing that was done. My tumor was grade two. After speaking with my dr today I am feeling better about this - he says the two spots they are watching are too small for biopsy or pet scan, so ct scan is the best way to watch them for now. They are growing very slowly (2mm to 4mm to 6mm for the larger one), so he doesn't think it's a malignancy, but it is possible they are. Better than not watching I guess. It is hard to live with the dark ominous unknown all the time. sigh.

    Keep getting the scans

    I had abdominal pain in 2014, so my PCP ordered a CT scan, which showed a very small paracolic gutter mass.  Then I had a PET scan two weeks later, which showed the same.  I went to my GYN/onc who said it was too small to biopsy (he wasn't sure if he went through my side, he could even locate it).  So then he did a CT scan at 3 mos., 6 mos., and a year.  At a year, he told me it couldn't be cancer as it hadn't grown.  If anything, it looked slightly smaller.  Fast forward to this year where a colonoscopy showed what turned out to be the same mass wrapped around the outside of my ascending colon.  I had surgery shortly thereafter, before I ended up with a bowel obstruction.  I don't mean to scare you, but my advice is to keep getting checked out with scans a couple of years or more down the line. If I had done that, I would've saved myself a lot of pain.  

  • Pennielane
    Pennielane Member Posts: 8
    #7
    It's officially a recurrence in my lungs

    following up on this from May, I had a chest scan this week which showed continued increase in size for the two largest spots as well as more spots, so its official that my cancer has recurred in my lungs. My Dr recommmended Megace - progesterone - and a scan in 8 weeks. He says this is slow growing stuff, and he doesn't think the chemo would perform as well. I know hormone treatment can be great when it works but there's a significant chance it won't. I'm terrified...thoughts? Advice? Experience with Megace or recurrence in the lungs? Spots on both sides. 

  • derMaus
    derMaus Member Posts: 558 Member
    edited August 2017 #8
    Plenty of Options

    A few members of this Board have had lung mets; you might want to do a search and see what their experience has been. You may also want to look at other discussion Boards on this site, as there are lots of people who have experience with lung tumors/mets and their surgical resection. I believe one had a thoracic surgeon who used the term "cherry picking" to describe their removal. It sounds like your doctor is optimistic about local control, which is good, but there are also surgical options down the line if needs be. If you do have a biopsy at some point, live tumor testing is a good option to determine which chemo options are the most effective. Genetic testing of your tumor by Foundation One or similar firm is also a good idea. Please keep the faith and remember that you have lots of options if or when the need arises. 

  • beccabtown
    beccabtown Member Posts: 234
    #9
    I'm in a similar situation-

    I'm in a similar situation--mets to lungs and peritoneum, but 6 mos. after first-line treatment. I think this is a good time to look into genetic testing based on a biopsy if that is possible. My doctor told me there are no very effective treatments once endo ca has gone to the lungs, so it makes sense to get the most targeted plan you can. Some cancer centers have genomics programs that handle the biopsy and help cover costs, such as the Precision Genomics program at IU Health in Indiana. Best wishes to you. 

  • Tutu Judy
    Tutu Judy Member Posts: 2 Member
    edited August 2017 #10
    I too just learned I probably

    I too just learned I probably have met in lung. Only six months after completion of treatment for USPC. I started with a sandwich regime of carboplatin/taxol. But had severe reaction to taxol so only did 3 rounds of carbo then six weeks daily pelvic radiation then 3 more carbo. There was only one 5 mm nodule 3 months ago but this week multiple nodules. My gynonc is out of town so I'm pretty anxious waiting for more info. Feeling pretty hopeless at this point but working on an attitude adjusrment and will soon put my Wonder Woman outfit back on and get back in the fight. So grateful I found this site.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #11
    Tutu Judy,

    Tutu Judy,

    So sorry the hear about your mets. I'm glad you found this site. You will get great support and information from many caring women here. There are several active members dealing with the same thing that will most likely be along shortly to share with you.

    Welcome and please come back and let us know what your next steps are when you find out.

    Love and Hugs,

    Cindi

  • derMaus
    derMaus Member Posts: 558 Member
    #12
    I forgot to mention: I asked

    I forgot to mention: I asked my radiation oncologist specifically about recurrence to lung, as that's such a common site and I wanted to be prepared for what might lie ahead. He was very positive about his successes using CyberKnife on lung tumors. Having that information in advance gave me some comfort.

  • oldbeauty
    oldbeauty Member Posts: 378 Member
    edited August 2017 #13
    Progesterone

    Pennielane, I am being treated for a second recurrence of endometrial adenocarcinoma, Stage IC, Grade 2, first diagnosed and treated in 2005.  At my first recurrence in 2012, I had pelvic radiation for a cancerous para-aortic node and then started on high-dose progesterone for scattered lesions in my lungs and a suspicious clavicular node.  All treatments combined worked to keep me in remission for 5 years.  By January 2015 a PET/CT showed no evidence of disease.  Unfortunately, a second recurrence appeared in November 2016.  I had several nodules in both lungs, up to 4 mm.  Like you, I was told they were too small to biopsy.  Based on the previous history, I chose to accept they were cancerous and I entered my first chemotherapy regimen with carbo/taxol for 8 months.  CTs in April and June showed the nodules markedly reduced, all but one were barely perceptible and the one that could be measured had shrunk by half. A PET/CT in September will give more insight to my situation now.  So, try to have a positive outlook that there is treatment out there for you that will produce lasting results.  Best wishes, Oldbeauty

  • Pennielane
    Pennielane Member Posts: 8
    #14
    Progesterone treatment and diet?

    Thanks for all the feedback. I'm relieved to read of oldbeauty's decent experience with the progesterone. I'm also comfortable accepting they are cancerous, even without a biopsy, based on the scans over several months. I'm praying that the progesterone impacts them. I had carbo/taxol following surgery and radiation, I got through it all, but tolerated it badly. I asked my dr if there is anything I can do diet wise to support the treatment, he doesn't offer much info. Does anyone have input on that? And for Tutu Judy, I have a friend who is further along dealing with mets after ovarian cancer. Her attitude is enviable, she is so positive. She tells me this is just a chronic disease, like heart disease. As long as there is another option ahead, there is hope. I try to humbly ask for a little more time every morning, and make my life meaningful. I'm grateful to the folks here for their caring input. 

  • henhill
    henhill Member Posts: 123
    edited August 2017 #15
    Hi Pennielane

    I also went on a megase / tamoxifen regimen that got me through a year.  It is not harsh at all, and I think if I had not gotten pneumonia over the winter, I might have gone further in time with it.  I concur with your friend, we can kick the can down the road for a long time by fighting back.  Stay positive and keep trying to stay stable.

Discussion Boards