Jump to content

newly diagnosed


BridgetO

Recommended Posts

Hi,

I'm recently diagnosed with lung adenocarcinoma, grade 1, stage 1a, with a KRAS mutation. I had a  VATS (laparoscopic) lobectomy 3 weeks ago.and I'm recovering much faster than I thought I would. I have a few questions.

First, my doctors told me that for this early stage cancer, surgery would almost certainly be curative, with no further treatment needed. However, they also said that this cancer has a tendency to recur. Somewhere I read that it recurs in about 50% of cases. How does "recurrence" fit with "being cured?  Have any of you had a stage 1a adenocarcinoma recur? How long afer surgery?

Second, this lung cancer is my 3rd primary cancer. I had a grade 1, stage 1 breast cancer, and also a grade 3 stage 3 clear cell cervical. The lung cancer was discovered in a routine CT scan for keeping  watch for metasteses from the cervical.  This one wasn't (thankfully) a met, but new primary. BTW, I'm a never-smoker. I'm wondering why I have had multiple different cancers.  I don't mean "why" in the sense of  "why me?", but in the sense of whether there is some connection and whether I need to watch for any specifice new ones, ongoing.  I'm not seeing any information that these 3 types are related to any syndrome or specific environmental factor. Is it just bad luck?  I'd appreciate hearing from anybody with multiple "unrelated" cancers, or who has any thoughts or info about this.

Thanks!

Link to comment
Share on other sites

Bridget,

I am happy for you given your early discovery.  Stage 1A and resection of an en situ tumor is the best recipe for no evidence of disease (NED).  Surgery is termed a "curative" treatment but that does not always translate to a cure state.  Here is a blog I wrote sometime ago that speaks to the frequency of lung cancer recurrence.  The recurrence rate in the referenced National Cancer Institute study is 33-percent for Stage 1A lung cancer.  Indeed, this high recurrence is the reason the lung cancer community uses NED as opposed to cure.

I had Stage 3A NSCLC and was treated with curative surgery and recurrence was noted in about 8 months after surgery.  I trust you are seeing your oncologist for follow ups and scans.

I've had multiple types of unrelated cancer if you want to count several en situ Squamous cell skin cancer tumors that were surgically removed.  My doctor believed the skin cancer to be caused by overexposure to the sun.  I wouldn't know why folks have multiple cancers nor how common this condition is.  I believe however that now diagnosed with lung cancer, you should be very vigilante about recurrence.

Stay the course.

Tom  

Link to comment
Share on other sites

Good morning Bridget,

I also had surgery for Stage 1A NSCLC adenocarcinoma.  My surgeon and oncologist both agree that removal of the lobe where the tumor was is the current treatment.  Personally I am scared to death. I too had breast cancer 13 years ago and treatment was removal of tumor with chemo and radiation. Seems like there would be some type of further treatment with lung cancer have such a bad rap about recurrence with in the 5 years. I carry the brac2 gene but there does not seem to be any correlation with breast and primary lung cancer. I am lost just like you are.  If anyone can find reassuring info on this topic I would be greatly appreciative. Keep me posted

Shari

Link to comment
Share on other sites

Hi Tom and Shari,

Thanks to both of you. Tom, your explanation of "curative" was helpful to me in understanding this. I also read your blog and just got your book on Kindle. I'm learning all I can about lung cancer.

Shari, yes, our situations are similar and I was happy to hear from you.  I was told by all the doctors the same thing you were,that surgery wa the only treatment needed.  Did you have molecular/genetic profiling done on your lung cancer tumor? As I said in my first post, mine had a KRAS mutation. I wanted to know this because it could be relevant in a recurrence/metastasis. Tumors with the KRAS mutation don't respond very well to chemo and also there hasn't been any immunotherapy that can target it. I did read an article in the New York Times just today about  a woman with colon cancer with a KRAS mutation appears to have been cured by a new kind of immunotherapy. in a clinical trial. So maybe thisis a breakthrough.

I had my cervical cancer in 2011.The prognosis was poor because it was a really aggressive and rare tyoe. I had some grueling treatment--radical surgery, consurrent chemo and radiation and additional different chemo. Now, over 5 years out, I am NED. 

My doctors all talked in an optimistic way about this lung cancer--very early and slow growing, surgery "curative". My pulmonologist did say they often recur. Now that i'm reading about lung cancer and looking at stats, it seems like the stats on recurrence and survival for this are about the same as for my cervical. Seems like what was considered a poor prognosis for cervical is considered a good prognosis for lung. Interesting.  

I do know that statistics are just statistics, though. They're about large numbers of cases. And I'm one case and  neiither I nor anybody else knows where I 'll be n the range of possibilities.

Bridget

Link to comment
Share on other sites

Bridget,

I feel a special obligation to the newly diagnosed because of my length survival. I have this gift of lessons learned to pass on.  Most important is if you are choosing treatment, you are choosing life. How long? Who knows, but rather than a length focus, I believe a survivor should have an enjoyment focus. Do something you enjoy with the life you have.  

And, if I can live, so can you. 

Stay the course. 

Tom

Link to comment
Share on other sites

Hi, Bridget,

I am sorry to hear about your diagnosis, but like Tom, I am happy to hear that it was detected early. That is always a good sign. I'm also glad that you've joined LCSC and connected with Tom and Shari. This is a great forum to share stories with and ask questions and advice from other patients/survivors. Tom already mentioned his blog and there are a few others as well. Please feel free to join in conversations on start new ones in the discussion boards. And let us know if there is any specific type or support or resources that you are looking for.

LUNGevity's President Andrea Ferris is a member of the Stand Up to Cancer Lung Cancer Dream Team, which is dedicated to understanding and treating the KRAS mutation. You can learn more about their research program here https://www.standup2cancer.org/dream_teams/view/su2c_acs_lung_cancer_dream_team.

Please keep us posted and let us know how we can help!

Lauren
--
Digital Community Manager
LUNGevity Foundation 

Link to comment
Share on other sites

Hi Tom and Lauren,

I definitely am choosing to live! Travel is one of my great joys. I have 4 trips planned over the  nest 8 months and I'm really looking forward to them. I'm also starting to write, and recently joined a writing class. I have some great role models for enjoying my time in cancer survivor mode.  Since my diagnosis of stage 3 grade 3 cervical cancer in 2011, have been part of gynecologic cancer support group. There were 3 women in my group who each had stage 4 ovarian, which is a pretty dire prognosis. All have since died. All of them lived their lives to the hilt as long as they possibly could--traveling (one had a trip to China between chemo sessions, another went to the Galapagos and had to be medically airlifted out--her attitude was, oh, well, I had good travel insurance), horseback riding, tango dancing, photography, enjoying friends and family. Each maintained her sense of humor and her sense of hope. I'm sad they're gone, but I'm still happy when I think of them. They continue to be an inspiration to me and I want to live like they did, regardless of diagnosis or prognosis. 

I'm learing all I can about cancer so I can be actively involved in my treatment and surveillance. I find it all really interesting! I may have said this before, but being curious and interested in all aspects of this journey is a way for me to maintain a little distance and some balance and feel calmer about it.

Tom, I got your book on Kindle and read it in a day. Boy, you've really been through it! I agree that if you can survive, so can I.

Lauren, thank you, thank you for the link to the Stand Up To Cancer site. I read the stuff about the work on treatment for lung cancer with KRAS mutations. It's encourageing to me to know that if I have a recurrence, there may be some effective treatment. If you see anything else about KRAS, I'd love to hear about it.

Bridget

Link to comment
Share on other sites

I do not know my diagnosis yet surgery is DEC 14 but if I do have stage one everyone says u treated it early don't worry. I'm trying to be positive but it sounds like once u get cancer it will recur.I'm trying to stay the course but it feels like a nitemare .you all are so strong minded I give u a lot of credit! Thanks for listening.  Michele

Link to comment
Share on other sites

Michele,

Discovering lung cancer at an early stage yields the best probability for successful treatment, but probability implies uncertainty.  Knowing many with lung cancer, I can report there is a high expectation of "surgery and done."  And for many that is true, but for some it is not.  So it is my belief that we need to be aware of the persistence of lung cancer so we don't suffer crushed expectations and depression in addition to additional treatment.

I hope your surgery is curative.  You should be positive about your treatment and most important, recognize and participate in the benefit of treatment -- extended life. Lung cancer's persistence does feel like a nightmare but thankfully every night's sleep does not end in a nightmare.  I hope and pray your surgery is successful and look forward to you reporting the results.

Stay the course.

Tom

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.