My fiance just diagnosed with adenocarcinoma. It is a large mass (8.9 cm x 5.5 cm x 7 cm) in Right Lung
PET report says: "Apical mass with broad pleural contact at the apex and along the superior mediastinum is redemonstrated with findings favoring the presence of focal mediastinal invasion along the tracheoesophageal groove). The mass is also contiguous with the right superior hilum.
At this time, appears this is contained to this 1 location.
QUESTIONS PLEASE --
1) Would you expect they will offer surgery as option if breathing test shows ok ?
If so, which is most practiced -- to do a few rounds of Chemo prior to surgery and then also after surgery OR to go right to surgery and then chemo only after.
2) because the mass touches the pleura and the tracheoesophageal groove, would this make for a tricky surgery ? What questions to ask a surgeon to know if he/she is experienced enough?
3) I know Carboplatin + Alimta is a very common combo for adeno, but I had noticed in last few days of reading lots of case histories that I see AVASTIN added to make a triplet combo, and seems like with good results. What are your thoughts on this - could Avastin really increase benefit of chemo ?
4) any new info. on whether cisplatin works better than Carboplatin or if Paclitaxel works better than Alimta?
5) would you expect any radiation to be recommended.
Reply # - August 26, 2015, 07:02 AM
Hi healmymom,
Hi healmymom,
I'm very sorry to hear of your fiance's diagnosis. Unless there are other limiting factors, I think it is likely that surgery will be offered. Adjuvant (post-surgery) chemo is most often used, but it can be performed before surgery (Neo-adjuvant) with similar results.
The location of the tumor in relation to sensitive structures may make the surgery more complicated. In any event, it is important to have a surgeon who has extensive experience and specializes in thoracic surgery. General surgeons do not tend to have the necessary experience to do the best job for you, so you'll want to ask about the type of surgery they perform. Often you can find a good, dedicated thoracic surgeon at a cancer center affiliated with a teaching institution.
Although carbo/paclitaxel and carbo/alimta are well-studied and often prescribed in the setting of stage IV disease, the best-studied chemo regimen in the adjuvant/neo-adjuvant context is cisplatin/vinorelbine, especially for fit, younger patients, although many oncologists routinely substitute carboplatin because cisplatin makes the regimen quite tough to tolerate. Dr. West discussed the pros and cons of using cisplatin/vinorelbine, including the addition of Avastin and the use of Alimta in this post.
Radiation is a possible which your fiance's oncologist may recommend based on the specifics of his situation.
Good luck to both of you as your fiance begins treatment.
JimC
Forum moderator
Reply # - September 7, 2015, 12:07 AM
Thank you, Jim for your
Thank you, Jim for your response. Here is the treatment decided on for my fiance. He will get chemo/radiation -- (cisplatin/etoposide) for 2 rounds, concurrent with 33 doses of radiations.
The 2nd round of chemo will be done 22 days before the radiation, and then they will wait apprx. additl. 30 days before doing CT scan. That means that the chemo will be done MIN. 2 months before a CT scan is done.
Can you explain why only 2 rounds of chemo are done with radiation instead of 3 rounds ( which would make the chemo end the same time as the radiation). Seems to me that 2 rounds makes the chemo end too early.
Reply # - September 7, 2015, 08:09 AM
Hi healmymom,
Hi healmymom,
Two rounds of cisplatin-based chemo is the standard protocol in chemoradiation treatment, mainly due to the rigors of that chemo regimen. Despite the difficulty some patients have in tolerating it, for fit patients it is has the best evidence of efficacy. Dr. West discusses chemoradiation in these posts:
http://cancergrace.org/lung/2007/07/23/concurrent-ctrt-as-soc-for-st-ii…
http://cancergrace.org/lung/2007/07/25/upside-of-consol-chemo-for-loc-a…
http://cancergrace.org/lung/2007/07/
If you have further questions after reading these posts, please let us know.
Good luck to both of you on his upcoming treatment.
JimC
Forum moderator
Reply # - September 7, 2015, 09:19 AM
AS as always, thanks very
AS as always, thanks very much Jim. I read all 3 posts that u attached.. They are very informative. Since they are all from 2007, this means that in the lat 8 yrs. - nothing has tested to be more successful than cisplatin~etoposide concurrent with radiation with no consolidation drug post-radiation?
Reply # - September 7, 2015, 03:13 PM
I'm sorry to say but yes
I'm sorry to say but yes nothing has changed in that time for this particular situation.
In a recent blog post dated just a couple of months ago Dr. West says, "Today, we have no evidence that more intensive treatment is better. Many clinical trials have added chemotherapy or targeted therapy after the standard 6-7 weeks of concurrent chemotherapy and chest irradiation, and the evidence has shown that escalating the chemo adds side effects but doesn’t improve overall survival. We have evidence that escalating the radiation dose is associated with worse survival." http://cancergrace.org/lung/2015/07/20/many-faces-of-stage-iii/#more-16…
On a personal note, as you can see from my signature below my husband had quite a lot of treatment based on an escalated staging agreed upon by a group of doctors in 2 locations though it may have been an aberration, twice. His possible over treatment has left him with many battle scars that may have been unnecessary. Though it is unregretted treatment. When it was thought to be stage III I learned what I could about pancoast tumors.
What I read about your fiance's tumor it's quite unusual in that it's adeno and not growing to the typical places a pancoast would. With that said, it's not likely anyone would or more importantly should do surgery, unless it's a surgeon who does only lung (not heart and lung) and pancoast tumors. As unusual as his tumor is it's likely not resectable but only a place like Mayo, MDA, Cleveland, Seattle etc could give him a good clue about surgery.
My husband, if cured, was most likely cured by concurrent chemo/rads. That's 2 months out the 3 years of hell, I'd be lying if I said I didn't have any regrets but you just don't know in real time. The best you 2 can do is to arm yourself with knowledge and surround yourself with those who you and he trusts to do the work. Keep us posted.
All best,
Janine
Reply # - September 7, 2015, 04:01 PM
HI Janine, thank you for
HI Janine, thank you for your response. I do search for post on the topics I am questioning before I write in, but since so many are from so long ago, so I wonder if I'm missing something.
Reading your comments about possible overtreatment or choice of treatments really hit home for me, because my mom just died in June from adenocarcinoma and I re-think her whole ordeal all the time, about things that the drs. should have done differently or something that happened like a blood clot in her lung that despite all our research and questions, we still had no knowledge about and no dr. ever mentioned it to us. My mother suffered excruciating pain for 2 years after her lung surgery.
I was devastated when she died in June, and then in August, we found out that my fiance has this large mass adenocarcinoma in his right lung. Imagine the changes of this happening -- losing my mother and then finding out 2 months later that my fiance also has adenocarcinoma. I thought it was more than I can bear, but I am trying to find strength for him, afterall, he is the one with the disease.
I am sorry to be writing this as it's not a question, but just this one time I really wanted to reach out to you.
I am sorry for what your husband had to go thru for 3 years of treatments, but it is SO beyond wonderful that his is NED still today. It is very encouraging news even though our situation is totally diff.
Reply # - September 8, 2015, 04:34 AM
I think you'll find that most
I think you'll find that most of the newer treatments are being aimed at advanced cancer using targeted and immunotherapy drugs. There are many chemo drugs for NSCLC and he can be switched around if they find one is not working. I do think that chemo/rads would be first in a tumor this size. Then they'd see if surgery can be done. As Janine as said you want a thoracic/lung surgeon not a cardio/thoracic surgeon.
I had a 5.2cm tumor that invaded the pleura. I had my surgery done by Dr. David Sugarbaker who at the time was in Boston. He is now at Baylor in Texas. He is a top thoracic surgeon when it involves the pleura. Again there are other areas of concern when it comes to surgery, so I'd get him through the chemo/rads and go from there. Take care, Judy
I'm not a medical professional or a moderator, I am a NSCLC patient.
Reply # - September 8, 2015, 06:29 AM
healmymom,
healmymom,
I am so sorry that lung cancer has affected your family as it has. I am wishing you and your fiance good results from treatment, strength in dealing with its side effects and the uncertainty such a diagnosis causes, and peace and comfort as you fight this together.
JimC
Forum moderator
Reply # - September 8, 2015, 11:41 AM
Judy,
Judy,
A few years ago I saw the name Dr. Sugarbaker as a surgeon who would remove the pleura. It caught my eye because my mom had her cancer in the pleura. I actually just looked him up recently, and saw he is now in Texas -- too bad for us as we are in the Boston area. My fiance has it touching his pleura also, at least they think so, but the surgeon only mentioned about getting it off his esophagus, nothing about the pleura. What did Dr. Sugarbaker do about it on/in your pleura?
Reply # - September 8, 2015, 03:44 PM
He moved to Texas last year.
He moved to Texas last year. You'd have to ask a surgeon about what they would do. I had my entire right lower lobe removed and he removed it from the pleura as well. You'd want to possibly check with a thoracic surgeon that deals in mesothelioma, since that involve the pleura. That's why I chose Sugarbaker. It may not even be in the pleura. It's best to wait and scan again after treatment to see how much it shrinks and away from hopefully the pleura and esophagus. Take care, Judy
P.S. He trained many surgeons and the top one at Brigham is included if you want another opinion.
Reply # - September 8, 2015, 08:43 PM
Since you're in the Boston
Since you're in the Boston area an opinion is easily appropriate. Dana Farber/Brigham and Women's as well as Mass General both have thoracic surgery units. Too they both have teams called 'tumor boards' that include surgeons, radiologists, med oncs and radiation oncs who discuss complicated cases. Unless he's already being seen at one and 2nd opinion from one is very appropriate. Many people see their "2nd opinion" person at transition times before finalizing plans (most especially if there's a loong drive). This is a must read on the subject, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…
I'm so glad you wrote and told us about some of your travails, the worst. It's welcome to have non clinical conversations. Even if we aren't technically a social forum doesn't mean we can't have human moments, that's got to be a part of all this. We all need it. Me as well as you and Judy and Jim and anyone else who'd like to chime in, there's plenty room for that. I lost my mom as well just before my husband was diagnosed, just 3 months. Not from lung cancer and thankfully she was fairly well just 2 months before she passed. I think I forgot to miss all the support she would have provided through D's treatment until it was over and it breaks my heart that she wasn't there to pet me. I hope you don't dwell on what may have been different. A different strategy may not have been beneficial. I always worry about how much is enough, finding that balance.
Keep us up to date on how and what he's doing and how and what you're doing. We're in it together, again.
Janine
Reply # - September 8, 2015, 09:38 PM
Thank you again so much,
Thank you again so much, Janine for your comments and words of advice about my mom. You brought tears to my eyes to hear that someone really knows and cares what I'm going thru. I am going to look for some kind of support group to try out, as I think it might do me good.
As far as a 2nd opinion, I figure for right now the treatment is right on course with what posts from cancer grace say (and I've read ALOT of them). But once the chemo/radiation is done and status scans are done , IF they say the mass has shrunk enough and surgery is an option, then I'll have to think about a 2nd opinion. The hospital we are going to is not one of the big name ones, but I have to say, thus far I am really impressed with their multidisciplinary team. He had appt. on Monday, CT scan Tues., PET Wed., and biopsy Thursday., then surgeon consult, MRI, stress tests, breathing tests all in the 2nd week. My mom's appts. took weeks between some of the appt. The lead dr. on the team worked at one of the big hospitals for years, then started her own team at this hospital.
It was easy to get 2nd opinions for my mom, cause she had the best insurance, and didn't need referrals. When you need a referral, I'm thinking it is harder, but I don't really know.
I am concerned that the 1 surgeon on this multidisciplinary team is a cardio-thoracic surgeon and a few people on cancer grace have said make sure it is a thoracic only surgeon. This surgeon seems very experienced , he's older and has an award of excellence in his office. If and when surgery becomes an option I will prob. be back asking for further guidance on how to proceed. It's late right now but I will read the post on 2nd opinions you attached. THANK YOU AGAIN SOOO MUCH -- YOU CAN'T IMAGINE HOW MUCH I APPRECIATE IT ! I haven't worked since Jan. cause I took med. leave to take care of my mom, but I went last night and made a good donation to cancer grace because this website is PHENOMENAL!
Reply # - September 9, 2015, 01:28 PM
There is a wonderful support
There is a wonderful support group called Inspire. They deal with many illnesses including all types of LC.
I have been a member there since my mom was diagnosed in 2009. She had ext SCLC and from beginning to end was only 6 weeks. I was diagnosed a year later. Here's a link for you to check them out.
Take care, Judy
https://www.inspire.com/groups/american-lung-association-lung-cancer-su…
Reply # - November 6, 2015, 07:08 PM
I'm reading this thread two
I'm reading this thread two months later with interest. healmymom, do you have any updates to share about your fiance's staging and care? Wishing you all the best on your journey.
As you can see in my signature, my dad also presented with a very large mass. When large is defined as anything over 3cm I wondered how many others had any dimensions in the 9cm range.
In my dad's case staging took a long time, alternating from local Dr to the impressive team at the academic health center an hour away. They labeled him unresectionable, which he didn't understand, and tossed him back home where they slowly, to Dad's frustration, eventually got the concurrent chemoradiation started a month and a half after the first xray revealed the mass. He had an initial 75% reduction which then slowed to next to nothing.
He is now in a transition time and has ruled out surgery, this time understanding that the proximity to the bronchus and artery would mean taking the whole lung and even then could not guarantee getting all the cancer.
He is still debating either 1) trying Tarceva or similar TKI, which he says is only slightly better than doing nothing at stage iii [I have not verified this, but a recent post about first line Tarceva makes me second guess how we pushed to start treatment, which meant the old accepted route], or 2) joining an immunotherapy trial using pimbrolizumab/keytruda which has never been tried on stage iii NSCLC patients. As cards7up said, the newer treatments are immunotherapy and targeted therapy. So much promise but no promises. For someone who can get bent out of shape for choosing the 'wrong' grocery line this choice so full of unknowns is ... well I guess much of life is moving forward based on not enough information, only without reminding us of our mortality quite so vividly.
Congrats cards7up on passing the 5 year mark by the way!