I've been advised by my surgeon, who removed a 4cm adenocarcinoma last month (RLL, RML removed; no lymph node involvement) that the cancer has been removed, not to get chemo, just to live my life and go for scans every six months. If it's going to come back it will, if not, it won't. Saw an oncologist at Sloan-Kettering this week who said to go for the chemo (16 weeks), citing a mere 3% overall 5-year survival advantage for 1Bs who go that route.
On the one hand, it seems absurd to subject myself and my family to potential ravages of chemo since the likelihood of benefit is so small. On the other hand, there's the argument that I should do everything possible, no matter how remote, that could achieve a "cure" while it's still in reach.
Practially, I have a few days in which to make a decision. I've read as many study reports as I can, and am assembling additional questions to run by the oncolgist.
Has anyone else here faced this choice? Any insights, thoughts, or wisdom to share?
Thank you so much.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Hard Decision: 1B adjuvant chemo or not?
- By dm6maj7
- Posted October 27, 2009 at 8:23 pm · 48 replies
- In Non-small cell lung cancer - Stage I
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Surgery Falls Breast cancer Taxotere Pneumonia Chemotherapy Pain Weakness Lung cancer Nausea and vomiting Stress Bladder cancer
48 replies
- Oldest first
- Newest first
- By Munker
- Posted October 27, 2009 at 8:30 pm
- Report post
I was stage 1 A and given the same advice as you but if I were 1B I would go for the chemo. From all the research I have done the key to a cure is aggressive treatment at diagnosis. I think the oncologist is right on. My nodule was approx 1.5 cm so I am surprised that the surgeon is advising against chemo. I think protocol for 1B is def. chemo. Good luck.
- By D1
- Posted October 27, 2009 at 8:44 pm
- Report post
Get the chemo. My husband was Stage 1 B (11/06), and he got the adj. chemo. He's been NED for nearly 3 yrs. Our friend, who was Stage 1 A (10/06) was told "no chemo"...her cancer returned, Stage 4, in 4/09 and she died in 9/09. Please, please get the Adj. Chemo; it's your best chance to live cancer free. Yes, it's hard, but it just might save your life. God bless.
- By D1
- Posted October 27, 2009 at 8:48 pm
- Report post
PS...my husband's tumor was 3.7. He had no lymph node involvement. He had VATS; the surgeon said he got it all. But, my husband's surgeon at NYU believes 1bs should get chemo. The onc. confirmed this view.
From our rdg., a 1B has a 70% chance to live 5 yrs. or more (the studies only follow for 5 yrs.). The 1Bs who get Adj. chemo have a 78%-80% chance to live 5 yrs. Go for the ins. policy.
The chemo is tough, but hair falls out and hair grows back. You will survive chemo and hopefully survive lc too.
- By D1
- Posted October 27, 2009 at 8:51 pm
- Report post
It's me again. My brother-in-law was Stage 1 A in July 2007. He did not get any treatment after surgery. In November 2008, he had a brain met, big tumor, surgery, radiation. He's still battling, now a Stage 4. I really believe my husband is alive today, no mets, almost 3 yrs. NED, because he had that Adj. chemo.
- By dachshundlover
- Posted October 27, 2009 at 9:03 pm
- Report post
There are plenty of people on here who are 1a or 1b and did not have chemo, myself included while the jury is still out for me...this in only my first year there are numerous people who are 2, 4, 9 year survivors with no more LC and no chemo...I'm sure they will jump on your post hopefully before you have to make your decision and tell what they know..take care,,,,Cindi
- By dm6maj7
- Posted October 27, 2009 at 9:12 pm
- Report post
D1, I'm sorry for your losses to this horrid disease, and thank you for your thoughtful responses. I'm not so worried about the hair loss, but the potential for neuropathy has me spooked (and the nausea, and the cost, and...).
One question, do you know where the 78-80% you cite comes from? Also, I like how you refer to the chemo as an insurance policy. I am so torn as to this call.
- By sunshine2gal
- Posted October 27, 2009 at 10:09 pm
- Report post
I would go for the chemo. Might as well do all you can just in case.
- By cuddles53
- Posted October 27, 2009 at 11:12 pm
- Report post
It is a very hard thing to say what to do. I took chemo i had no choice that or die soon. I had stage lV really as soon as it was diagnosed so I didn't have this option and this question. But I can tell you for me the chemo was not bad to take it, it was fairly simple go and get an Iv every few weeks, but i did get some really bad side efects later. The nausea and vomiting is really under control today, at least for me, the nausea I had for about 45 minuites on the tihird day after chemo each time I had chemo, and it never turned into I needed to throw up, it was a mild case of nausea and not even bad,They have such good anti emetic meds today for that.. The neuropathy, I do have, and now 3 years and 9 mnths later it has gotten worse, it started in one leg and now it is in another leg, it feels like my legs are numb, and pins and needles. I also have many other side effects which hit later after chemo, and that is ulcerative colitis,and muscle weakness is very bad. I have never been the same since I had treatments.. They are both bad for you. I think if I could get away and not have it, I would not take it. I would wait, and get my scans as you should, and any symptoms, and I mean any symptoms you be on that phone with the doctor to look into it. This is the problem the doctors never take me serious. So will they take you serious if you are to call them and say I am having leg pains, stomach cramps, headaches. Are they going to get you right in, and xray you? If you think they will, then I would not take the chance on chemo with all of the side effects. There are some new vaccines that will be coming out and maybe are out, like /stimuvax, lucanix is not out yet but will be in another couple of years, these will be maintenance cdrugs to take without side effects. The immunptherapies will be drugs to take without side effects, if you can hang on a little longer until they have other drugs other than chemotherapy to treat or prevent, then I would wait it out, I think you have time, ask the doctor do they think you have time to wait it out for other drugs to control cancer rather than the toxic effects of chemotherapy.
This is just my opinion, and I do not know if it is right for you or not. I guess no one knows how they would answer your question, unless they were in your shoes. Good luck Sandy
- By Barb267
- Posted October 27, 2009 at 11:45 pm
- Report post
When they thought I was a 1A and told me no chemo (this was before surgery) I was very upset. I wanted chemo to make sure I kick all of cancers butt. Turned out I was 3A and didn't have a choice, took the chemo, sick as a dog, lost ALL my hair. So glad to be alive.
Barb
- By HighlandGuy
- Posted October 27, 2009 at 11:54 pm
- Report post
Nine years ago I was adenocarcinoma Stage 1B. I had lobectomy URL. Adjuvent chemo had not been proven at the time. My Oncologist told me about studies, gave me option. Because of other physical conditions decision was made not to go with chemo. I have been NED for past nine years.
I have just shown up with tiny spots on my lung. Panel of Oncologists feel that if it turns out to be malignant, it will be a new primary or possibly matastasis from my anaplastic bladder cancer rather than a return of the lung cancer. The largest spot is 4mm, so we will have a CT in six months.
HighlandGuy
- By tezzasgirl
- Posted October 28, 2009 at 4:09 am
- Report post
Hi my husband was 1b now 2a with new grading system.We too found it difficult to make this decision.My husband went with the chemo even though the odds were small.that was 7 months ago.He managed the chemo like a pro...actually he looked the best he had had for the past few years.He gained much needed weight and had energy and was back better then ever.His only side-effects were neuropathy(manageable) and hair loss.From our research we know the that chemo for 1bs is debatable.but a few things you need to consider are
a)the size of the tumuor and whether it is poorly differentiated or not.
b)lower lobe lung cancers have poorer survival rates.
c) the results of the PET scans need to be considered.
Unfortunately even though my husband was in the best of health prior to all this,he now battles pneumonia regularly and is currently in hospital with??? bowel cancer and mets to his liver......it is a hard call but I am pretty sure we would consider chemo again.The important thing to remember is this is no easy ride either way and you have to be happy with the decision you make.
best wishes
Bev
- By tezzasgirl
- Posted October 28, 2009 at 4:11 am
- Report post
Forgot to tell you my husband's tumour was left lower lobe,and measured 6 cm.
bev
- By jjbanker
- Posted October 28, 2009 at 7:18 am
- Report post
Good morning, I went through the same thing in 07, Had the surgery, and had my followup and surgeon was very positive, no lymph node involvement , Stage 1B because of size and then I saw the Oncologist and she very bluntly told me that because of size,4.5 cm and the fact it was Adeno. she recommended 4 rounds of chemo, and she could see my disappointment and explained that if I wanted to do everything I could possibly do, I needed to listen to her and of course then STILL no guarantee it will not return-you just do it. I did the 4 treatments and it was tough, never hospitalized but the 3rd one was really tough and I am okay now. Just had my checkup last week and all is clear. I have read recently that they do not recommend anymore for Stage 1B-But I could tell you MD Anderson will always go the caustious route. Lost hair 10 days from first treatment but I was prepared(no you are never prepared) but oncologist was very honest about the chemo treatment so I had purchased wigs because I worked the moment I was able to. I hope this helps. I just had to put my trust in the Lord and believe the Drs. are looking out for me. I do not regret it now. I would have always wondered.
- By linnea
- Posted October 28, 2009 at 7:32 am
- Report post
I was dx with adenocarcinoma in April of 2005, lower left lobe. Stage IB because the tumor was 5 cm. MY oncologist strongly encouraged me to get adjuvant chemo, which I did (four rounds cisplatin/taxotere). It was grueling, but doable. In my case, my cancer recurred rather quickly anyway, but I also have the mucinous variant of BAC, and they now know that is unlikely to respond to chemo. So get as much info as you can about your husbands particular pathology--viewpoints have changed greatly even since my dx. BTW, despite my recurrence, I am hanging in there. I was tested for mutations, and although I did not have EGFR at dx, three years later they retested and found the newly discovered ALK mutation in my tumor. I am currently enrolled in a clinical trial that targets that mutation and am doing quite well. So keep in mind that there may well be other treatment options down the road. Linnea
- By kkwv
- Posted October 28, 2009 at 7:36 am
- Report post
After surgery my husband was told it was all gone but he should have chemo to "mop up". Surgeon and 2 oncs all agreed. He was 1A on one side and IIB on the other -- both primaries. Surgery was done in May '09. He had 4 rounds of cisplatin/taxotere.
- By slm-dem
- Posted October 28, 2009 at 8:11 am
- Report post
certainly a mixed bag of results to consider. It is a tough decision to make. My hubby had 1.5cm adeno lul removed 4/08,. a few lymph nodes involved, refused chemo, met to brain 7/09. wbr and Gamma knife for that. He felt the small percentage of chance of longer life not worth the side effects , loss of quality of life with chemo. Can't second guess that decision now, but i certainly do wonder what if.
- By sb
- Posted October 28, 2009 at 8:18 am
- Report post
I had to make the same decision almost five years ago. I was stage 1a but almost 1b because tumor my was 2.5 cm. At the time there was a study that showed that stage 1bs might see a 5% improvement in survival rate if they did chemo after surgery. I think at some point they found that wasn't necessarily the case.
At the time, I researched it a ton online - pubmed, NEJM, Medline, etc. I read the studies, considered my own health and what it might do to me to do chemo, whether I thought the tumor I had was aggressive (type, history, pathology) and then I tried to weigh the risk v. benefit. I felt it was kind of a slightly educated roll of the dice - it drove me crazy but I finally just went with my gut and decided against it. A few years later my doctor told me she was happy I had made that decision not to do chemo because the new studies didn't even show the benefit for the 1bs.
Now whether it was the right decision? Who knows - I'm still doing fine. Haven't had a recurrence and it will be five years in May. I know that my cancer was fairly slow growing though as I had pain for at least five years before I was diagnosed. So my feeling on this has always been that if I am going to get a recurrence it could happen further out than five years.
I know this isn't really helpful - I think it is kind of archaic that doctors don't know whether chemo is necessary. I haven't really stayed up on the latest studies though so it might help you to do some research to help make your decision.
I've had almost five really great years since I was diagnosed so I feel extremely fortunate regardless of what happens. You are one of the very fortunate ones too so I'm sure you will do very well.
- By kentmere
- Posted October 28, 2009 at 8:35 am
- Report post
Iwas 1b and was not offered chemo or follow up treatment .iwas just so glad as i hoped i would not have to go through chemo here in uk i just have x rays every 6 months .i have just reached the 2 years mark and have never felt better if doctors say it wont make that much difference why poison your body much better to build up your imune system i know for lots of people chemo saves lives and cures many but i think if it doesnt make a lot of difference just get on with life and enjoy
- By sinecure
- Posted October 28, 2009 at 9:01 am
- Report post
I had a similar problem as yours.I was on the fence, chemo or not.My family pressured me to get it.The rates I heard was 7% improvement with Chemo. So I took it. It was not that bad9 Loosing hair, sick etc. I had to stop after 3 sessions due to after effects. Had the operation on 9/11/08 and still clear. Still glad i had chemo mainly piece of mind.
- By jazzbo
- Posted October 28, 2009 at 9:14 am
- Report post
Hi, I've been through the chemo and its not as bad as it used to be. I think people are used to seeing cancer survivors when they are nearing the end stages and that is when You look and feel terrible. I'm not saying it's a cake walk but for peace of mind I would opt to do it. However I WOULD DEFINATLEY GET A SECOND OPINION FROM ANOTHER ONC BEFORE i MADE ANY DECISION. I'm not sure about 3% but those doc's know more than I. God bless and good luck, John
Add to the discussion