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Help, Please. Information?

LJ1
Posts: 4
Joined: Jan 2013

My mom has been diagnosed with LC and got confirmation today.  Pet scan showed it has not spread to other parts.  However, she has been having a hard time finding a Dr. to do CT biopsy due to the location of the mass they found in her upper left lobe.  She is also a breast cancer survivor- 6 yrs ago.  I have many questions.  She is reluctant to talk about it all and to complicate matters, her beloved dog has been diagnosed with LC as well.  She recieved confirmation of both cancers on the same day in the same hour. I am freaking out.  I am looking for information so I can DEAL with something....Why would a specialist, medical professional be reluctant to do the biopsy because of the location?  What does this mean?  All Mom would say was that it was a "nasty".  Any info would be greatly appreciated.  Than you all so much...

dennycee
Posts: 675
Joined: Mar 2011

My mom was told she had the same problem.   They wanted to bx anywhere but the lung and could find no place else.  They went ahead and did the Biopsy and her lung collapsed.   If I knew then what I know now I would have taken her to U Mich or Henry Ford.  If possible please take her to be evaluated and maybe treated at one of the hospitals designated by the NIH as one of the countries best: http://cancercenters.cancer.gov/cancer_centers/index.html

katenorwood
Posts: 1853
Joined: May 2012

Hello !

I'm usually on the H/N site.....but pop in here now and then because I have nodes their watching in both of my lungs.  My diagnoisis is one that will spread to the lungs.  However, if a biopsy has not been done on your Mother's lung....how is it they know it's LC ?  Is this maybe a met due to her breast dx from the past ?  My Mother had ovarian cancer that after 5 yrs. spread to her lungs.  We confirmed it from a blood test CA125.  So hers was deemed ovarian cancer of the lungs.  Mom's was inoperable due to the immense sizes of the tumors in both lungs and her general health at the time.  But saying this there are options for treatments other than surgery.  Please ask about other options....RFA, seed implants...ect.   Wishing you the best and prayers being sent for your Mother.   Katie 

djs123
Posts: 102
Joined: Jan 2012

Can you please tell me what this site is and how to access it.  I usually go to Inspire.com  specilalizes in lung cancer support website - do you know it?

dennycee
Posts: 675
Joined: Mar 2011

djs,

Inspire is a wonderful site with much to recommend it.  Many people are leery about being sent to another website as soon as they start seeking info here.  Let's give them the best info you can here then recommend that they seek additional information at other sites like cancergrace.org, lungevity.org, lung cancer alliance, American Lung Association, Livestrong, NIH.gov and other reliable sources.  

It would be advisable as well to learn more about the resources on this site so you can help newbies navigate this site as it does have some qualities to recommend it.  For instance, have you had an opportunity to visit the chatroom?  None of the other sites have anything quite like it.  Inspire has h/n boards as well, so certainly visit the one here but know that the h/n board here is more active than the lung board.  Do check it out under head and neck cancers.  

djs123
Posts: 102
Joined: Jan 2012

Dennycee

Thanks for the info, I was not aware of the chat room or the other websites and I wholeheartedly agree, this is a wonderful and useful site.

I'll have to check out the chat room.

d

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

I suggest you find a thoractic surgeon. He can do VATS Surgery, for the Biopsy, and take it out if he needs to.

 

Hope this helps.

 

cathy

djs123
Posts: 102
Joined: Jan 2012

Hi

I'm so sorry to hear about your mom's diagnoses.  My husband has lung cancer which has spread to the bones.  They did a biopsy of his bones, but not the lung. The found the lung cancer with the pet scan. As I layperson, I believe the reason they may choose not to do the biopsy is, if they puncture the area, it could spread, apparently because of the location that's a risk they do not want to take.  I would ask about clarification on this. 

I agree with the other post in that you should find a thoracic surgeon and also have a second opinion.

My husband is stage IV diagnosed in November, he is being treated with chemotherapy and surgery is not suitable for him.  There are a variety of treatments available for your mother and I can't imagine that they have to do a biopsy to start treatement.  Has she been staged yet?  Although I must say I hate the staging process, it's very frightening and I have chosed to ignore the number.  There have been great strides in this type cancer so certainly neither of you should give up hope.  I'm so very sorry about her dog too...I can understand her being freaked out.  

I would recommend you to a website called inspire.com, it's a wonderful source of information and very similar to this one only specializing in lung cancer.

Good luck to you both.  Do as much research as you can, you will see there are different types of chemo, there's radiation, there's lots of experimental drugs (tarceva being one of them).  Make sure when they do blood tests for her they check for genetic mutation (I think that's what it's called, or perhaps GFR mutation) you'll find more info on the inspire site.  You can post your questions there.

I wish you well....there is hope, please be strong....good luck with the puppy too.

Thank goodness your mom's cancer is localized, that is a very good thing.     Have they ordered a head scan yet?  That's another thing that is usually done.

Try and stay calm.

 

dennycee
Posts: 675
Joined: Mar 2011

Please be careful on your recommendations.  They will not start treatment until a biopsy says its cancer and they know what type it is. The wrong chemo agent can actually cause a cancer to grow faster.  Some agents used on NSCLC adenocarcinoma cannot be used on squamous cell.  It is great that you want to help just be sure of your facts. 

You do have some terrific experience and I thank you for sharing it.  

LJ1
Posts: 4
Joined: Jan 2013

Thank you all for your information and caring for a stranger!  I do have good news.  She DID see a Thoracic surgeon who was pissed that she was told she had LC.  It is NOT LC.  She had pneumonia a while back and apparently was coughing so hard a node in her lung became enlarged and got infected.  She is following up just to be sure.  The fear, heartache, and quite frankly, terror we were all facing is gone.  Sadly, she had to put her beloved little doggy down this afternoon.  Again, thank you all for your support.  It gave me hope when I was in the dark.  Praying for every one of you and your loved ones.

dennycee
Posts: 675
Joined: Mar 2011

No need for radiation or chemo.  You must all be so relieved.  Thank you for your good wishes.  

LJ1
Posts: 4
Joined: Jan 2013

Thank you all for your information and caring for a stranger!  I do have good news.  She DID see a Thoracic surgeon who was pissed that she was told she had LC.  It is NOT LC.  She had pneumonia a while back and apparently was coughing so hard a node in her lung became enlarged and got infected.  She is following up just to be sure.  The fear, heartache, and quite frankly, terror we were all facing is gone.  Sadly, she had to put her beloved little doggy down this afternoon.  Again, thank you all for your support.  It gave me hope when I was in the dark.  Praying for every one of you and your loved ones.

LJ1
Posts: 4
Joined: Jan 2013

Thank you all for your information and caring for a stranger!  I do have good news.  She DID see a Thoracic surgeon who was pissed that she was told she had LC.  It is NOT LC.  She had pneumonia a while back and apparently was coughing so hard a node in her lung became enlarged and got infected.  She is following up just to be sure.  The fear, heartache, and quite frankly, terror we were all facing is gone.  Sadly, she had to put her beloved little doggy down this afternoon.  Again, thank you all for your support.  It gave me hope when I was in the dark.  Praying for every one of you and your loved ones.

denny621
Posts: 4
Joined: Jan 2013

Congrats

jalu
Posts: 58
Joined: Jan 2013

My Mother was diagnosed with a spot in her upper left lobe in March 2012.  All other scans showed it was the only cancer in her body, so they felt they caught it early.  Two biopsies later, it was confirmed to be non-small cell adenocarcinoma of the lung.  Because they caught it early, they recommended either surgery to remove it or cypberknife.  We went with cyperknife and today her lungs show no new growth or spots present.  BUT, in August 2012, Mother felt "wierd" and went to the doctor where an MRI confirmed a metastasis to her brain.  The spots in the brain were treated with cyberknife in September 2012, but an MRI in January 2013, shows "new spots" in the brain.  They cannot do cypberknife again and the recommendation is Whole Brain Radiation Therapy (WBRT).  WBRT is NOT A CURE -- it only buys you time (a few months on average) and the drugs, the side effects are horrendous.  UNBELIEVEABLE.  Her lung is fine -- the fact it metastasied to the brain will kill her soon.  

My understanding of cancer in general is that once the cancer cells enter the bloodstream, they divide and multiply and metastasize to other parts of the body.  On hindsight, I do believe it was the "nasty" biopsies that released the cancer cells into her blood.  The approach we should have taken in March 2012 would have been NOT EVEN TO HAVE A BIOPSY.  If operable, have surgery to REMOVE THE ENTIRE SPOT (and surrounding tissue) and they can determine if it was cancer later.  I do think we would be in a whole different place today if we had taken that approach.  

So much for "catching it early".  We are doomed and hindsight is "golden".  When I rethink the whole scenario, I would have done something completely different from what we did do.  How depressing, but maybe it can help others, for what it is worth. 

Were the doctors able to tell you if the spot was "operable" in any way?  I wish you the best.  And I'm so sorry for your dog too!  I will put your Mother in my prayers!

dennycee
Posts: 675
Joined: Mar 2011

Jalu, so sorry to hear about your mom's diagnosis.  This is the second time this week I have read similar stories and it makes me mad because it is preventable.  Prophylactic treatment inthe form of adjuvant chemo would have saved so much heartache.  

I am concerned though about the incorrect information you have been given about Cyberknife. Like gamma knife, Cyberknife can be repeated.  There is a man on this website who goes by Dapsterd who has had GK 4 times.  I have another friend who has been through it twice.  WBR can only be done once- Please consult her radiologist about Stereotactic or Gk rads if she needs them again ok?

jalu
Posts: 58
Joined: Jan 2013

That very question is on our list for our February 26th appointment with the oncologist to "re-evaluate" WBRT.  I kind of thought that SRS, Gammaknife and Cyberknife were all the same thing. The reason they are saying that there is no point doing it again is because that approach won't catch all the spots that are not yet visible while WBRT will.  At the same time, catching everything you DO SEE has to be a benefit too doesn't it?  So, you make a good point and I do intend to follow-up on that approach before going forward with WBRT.  I can accept the fact that this disease is terminal -- I cannot accept treatments that CAUSE major suffering with side effects that lead to a horrible death.  

And how are you doing with your Mother?   The biopsy stage was not fun.  Because they didn't get results from the first biopsy, they did a second and Mother's lung collapsed too.  She had to have a chest tube -- very painful.  Lots of bruising afterwards.  

Thank you again for your concerns -- I am grateful!

dennycee
Posts: 675
Joined: Mar 2011

Some of the differences include using a mask or halo to hold head in place.  One moves patient for treatment by robot the other moves robot arm to treat.  GK is most accurate.  

There is a man who contributes at inspire.com whose cancer was diagnosed because of brain mets.  He had another round of them two years later and none since.  His name is stage4survivor.  Of course not everyone has his result but is a terrific outlier.  

 

As for my mom, she had other health issues that made her unable to tolerate  chemo or Tarceva.  She survived for 4.5 months.  My own cancer was diagnosed 28 months ago.  (Knocking wood here) I have no brain mets yet.  

Back to the WBR.  Mom had excruciating headaches that ceased with treatment but she had many negative side effects from WBR. At that time we were not smart enough to get second opinion.  We just believed doc when he said she was not a candidate.  

My best to you both and I hope they will do a GK. if they say no, check back.  Will dig up name of doc that takes patients with up to seven mets. 

jalu
Posts: 58
Joined: Jan 2013

I'll keep you posted.  Interesting to know GK is the most accurate.  I believe the initial SRS we had treated 4 or 5 spots.  The recent MRI showed only two more.  DEFINITELY a better approach than WBRT.  Thank you dear lady -- I am grateful.  Hey -- 28 months, you are doing GREAT and know how to enjoy life, I'm sure.  Your insights for everyone suffering today are so helpful.  Thanks again and take care -- janet

jalu
Posts: 58
Joined: Jan 2013

Just to follow up and clarify.  My Mother has an MRI on February 26th and that afternoon we go to the oncologist for the results.  I'm fairly certain that again -- he will be recommending WBRT as soon as possible.  

You say a doctor that will GK up to 7 mets.  Mother had 5 "spots" treated with SRS in September.  The January MRI showed 2 new "spots".  Surely those spots will still be there on February 26th, my question then is that would make 7 "spots" meaning we are on the "borderline" for safe GK treatment?  If, for example, the MRI on Feburary 26th shows the 2 "spots" found in January and 2 more "spots" just now showing up (for a total of 4 "spots" needing treatment), are we basically "beyond the limit" for GK?

Your thoughts, knowledge and expertise are so very appreciated.

Thank you,

janet

dennycee
Posts: 675
Joined: Mar 2011

Hi Janet, one of the people who posts regularly at Inspire.com was the source to that info.  Will dig that out and get back later today.  

Edit to add this link.  Note that there is reference to an individual who had 44 mets Treated with g/k.  http://www.inspire.com/groups/lung-cancer-survivors/discussion/number-of-brain-mets-for-gamma-knife/

jalu
Posts: 58
Joined: Jan 2013

THANK YOU SO MUCH FOR THAT INFO.  I think you have answered my question with that one link alone.  You are such a dear.  I'll be home with my Mother tomorrow and next week we go to the oncologist for the MRI (and results).  If he again insists that WBRT is the last hope, and if the location is good for GK and size of the "spots" are below 3cm, then I am going to have to insist on GK!  

My Mother is a fighter.  Gosh -- to actually have all the spots shrink or perhaps disappear would be the ultimate answer to our prayers.

You are a dear and I'm so grateful -- thank you dear lady and I will keep you posted.

Most sincerely,

janet

dennycee
Posts: 675
Joined: Mar 2011

To be on the safe side, I would get a second opinion in the works with one of these cancer centers that have passed some very rigorous tests to qualify to be accredited by the National Cancer Institute:  http://cancercenters.cancer.gov/cancer_centers/index.html

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