Frustrated Son

dantedante
  • By dantedante · September 11, 2012 at 5:28 pm · 26 replies
  • In Non-small cell lung cancer - Stage II
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My dad (66yrs old) was recently diagnosed with stage II lung cancer. We have been following a nodule in his left upper lobe at Sloan Kettering for the last 2 1/2 years, which has not grown. On July 27, during his yearly visit we were informed it has grown. Biopsy confirmed it was cancerous. Petscan indicated the cancer was localized in the upper left lobe. Surgery to remove the upper left lobe and lymph nodes took place on August 17. September 6th was the post surgical follow up appointment where we found out the results of the biopsied mass and lymph nodes. The cancer turned out to be 5 cm and 1 of the 27 removed nodes was infected, bringing him to stage 2 cancer. Chemo is now recommended. Frustrated that we have been following this nodule for years and it ends up in a node. What is his prognosis? Any stage 2 lung cancer patient stories? Thanks.

Edited September 11, 2012 at 5:29 pm

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26 replies   

Chilly1968

Generally good for Stage II. I'm stage IV and NED (No Existing Diease). Now that does not mean it will not reoccur in your father. There is no cure for any of us with this horriable diease but it is treatable if you stay on it. There are actually very few cancers you can cure.

HARCIR

My husband's story is very similiar, and he is the same age as your father. He is stage II. He had surgery to remove his left lung in Jan 2011. Had to take the whole lung due to location of the tumor. He also had one lymph node with cancer.

When the cancer has spread to the lymph node, Doctors generally recommend follow-up (adjuvant) chemo as a precaution to hopefully catch any stray cancer cells that may have entered the lymphatic system. My husband had four rounds - once every three weeks - following his recouperation from surgery. The chemo depends on the type of cancer. My husband has squamous and his chemo drugs were Cisplatin and Taxotere.

Chemo is rough, but my husband has no evidence of disease and we are coming up on two years since surgery. My husband now participates in a trial (MAGE-A3) which, hopefully, is preventing return of the cancer. I mention it because you should make sure that your dad's tumor is tested/ analyzed so that they will know whether he is eligible for trials in the future or for targeted treatment. My guess is Sloan Kettering would do this as a matter of course, but tumor samples may not be available years down the road when you might want the information.

I know it is discouraging that the cancer had spread to the one lymph node, but you are still very fortunate that the Doctors were following you dad, and were ready to move forward quickly with the surgery. Don't pay attention to the outdated statistics on the web...they are frightening, but you will find from members on this site that many are doing very, very well for long periods of time, and you have every reason to be hopeful.

dantedante

Thanks so much for sharing your husband's story with me. god bless. i truly wish the best for him and you and your family.

I just translated your story to my dad (he speaks italian and I am finding it hard to find italian speaking support groups for him). He definitely needs to hear stories that are hopeful and positive and similar to his.

I have a few questions: 1) why is your husband participating in trial studies if he currently is NED? 2) do i simply ask the doctor to test my dad's tumor? and why would the samples not be available for years? wasn't your husbands sample ready within a year to be able to participate in trial studies?

keep in touch.

dantedante

dantedante
  • By dantedante
  • Reply 3367554 · In reply to 3367225 by Chilly1968
  • September 11, 2012 at 8:14 pm
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thanks chilly for reaching out. i am new at this so i appreciate you welcoming me to this new family. my thoughts are with you.

cards7up

I don't know why Chilly thinks there are very few cancers you can cure, because your father can definitely be cured. That doesn't mean he will be, just saying with stage II they're going for the cure! Don't give up hope. Do you know what type he has? Harcir's husband is in a trial for a vaccine to prevent LC from recurring. What she also meant was that your father's current tissue samples may not be available years down the road so getting them tested now in case of recurrence will show if he has any of the mutations which now have targeted treatments. I don't understand why it wasn't biopsied previously as 5cm is large. Did it grow rapidly in the last year? Find out what chemo he's having and we'll try to help where we can. Wishing him the best. Take care, Judy

dantedante

Thanks, Judy. He has non-small cell carcinoma. As for the 5 cm comment....that is why I am so frustrated. As of July 2011 it was a bit over 1 cm for nearly two years so they decided to make his appointment 12 months later. So when we went on July 27, the CT indicated it was 2.7. Petscan also indicated under 3cm. Once they removed the mass and biopsied it, the doctors concluded it was 5 cm! For some reason the CT/PET scan was not getting full picture???? It leaves me to think that as of last year it prob was already over 2 cm and should have been operated on then? Anyway, it is what it is. It was meant to work out this way....and I am hopeful it will work out. We have the oncologist appt on September 18. I will def keep you all posted. I still am confused about the tissue sample. How do I ask the dr to this now? Didn't they already dispose of the lobe that was removed? I appreciate the lifeline this site provides.

dantedante

Judy, my dad has squamous NMCC.

HARCIR

They will still have tumor sample if his surgery was just last month. Hopefully, there will never be any more tumors so it is important to test the one that is available now. As Judy mentioned, there are some trials, like the one my husband participates in, that are for people who had their cancer surgically removed. The trial drug is aimed at preventing its recurrence.

Please do come back and let us know type of cancer and specifics of treatment plan. There are so many knowledgeable people on here who can and will weigh in with great advice and support.

I am also sending you a friend request and feel free to contact me anytime if I can help by sharing some of our experiences. Your dad and my husband have more in common than cancer - my husband is Italian and from Brooklyn.

Wishing your dad a speedy recovery. I imagine he is still in pretty rough shape following surgery, but he will get past this. A positive attitude is so important. We are finally beginning to feel a sense of normalcy returning to our lives.

cards7up

They would not have disposed of his tumor tissue. This is what is used to test for mutations. If he has squamous, then most times they won't test. But I'd ask anyway. Wishing you all the best. Keep us updated.
Take care, Judy

GA1979

Yes I would definetly be frustrated aswell if that happened to my dad. My dad is the same age as yours, only his cancer is more advanced. He Is also Italian, but speaks very good English. Stage II has a good chance of being cured. All the best to your papa

dantedante
  • By dantedante
  • Reply 3368630 · In reply to 3368353 by cards7up
  • September 12, 2012 at 9:14 am
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Judy, Why won't they test if it is squamous? Does that mean my dad isn't eligible for any trials?

dantedante

Harcir,

Do you still live in Brooklyn? I wish 10/15 years from now we will be able to continue to say we have similar stories....loved ones afflicted with stage 2 lung cancer, Italian, Brooklyn, and both living happy and fruitful lives!

dantedante

Hi GA1979 (that's the year I was born!)....Thanks for the supportive words...I have read so many stories on this site, which has helped me to relay many of them to my dad. One of them being an individual with Stage3 Lung Cancer and he/she is alive 13 years later...amazing! always believe.

HARCIR

So true! I see no reason why we and our loved ones shouldn't look forward to many many more healthy years.

Re testing squamous cancers, they do not always do so because squamous is much less likely to contain the mutations that have demonstrated positive responses to targeted treatments. There are also fewer trials for squamous. However, your dad's tumor should be tested because there are trials available, and you should know everything you can about the composition because it could shape future treatment.

Keep us posted on your dad's progress. Also sending you a private message.

Carla_B

I am right there with your dad. I had my upper left lobe removed on Aug 13. My tumor was smaller, 3.7 x 2 cm but 2 of 6 nodes were positive. I will be starting chemo (Cisplatin + Alimta) soon as well. My mass was found during pre-op for an elective surgery. I have tried not to worry much about the distant future but I am not going to lie, the nausea, vomiting and other side effects to come scare the wits out of me. Plus, I don't want to lose my hair. I guess it is a small price to pay. I have had thin hair for most of my adult life so I don't have much to spare. My best to your father. I will be following and praying for you both! Incidentally, I was tested for mutation and negative for both EGFR and ALK.

jmlavey

hi,
I'm state 2a nsclc survivor for 8 yr. 4 mo. with no recurrence. Good luck to your father.
Best

aleksondra
  • By aleksondra
  • Reply 3381029 · In reply to 3373796 by jmlavey
  • September 16, 2012 at 8:38 pm
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Did you have just surgery or did you also undergo chemotherapy?

aleksondra

I do not think my previous question was posted. I am asking why those of you had surgery and then were dignosed with Stage II adenocarcinoma chose either to undergo chemotherapy or to only follow the situation. I had surgery 9 weeks ago that removed a small tumor and several lymph nodes with only the node closest to the tumor showing any cancer. Given the side effects and the fact that chemotherapy decreases the chances of reoccurence by only 5%, why did you decide to pursue the chemotherapy? I need to make a decision soon and I feel tortured by the choice. Thank you for your opinion.

Carla_B

For me, I had 2 of six nodes with cancer, which in my world is 1/3rd, which increases my chances of the cancer spreading. Sure chemo only decreases my chances of the cancer reoccurring by 5-10%, but I owe it to my children to give them that 5-10%.

aleksondra

Thank you for yur response. I am wishing you good luck.

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