Bcharlie Continuing Update - 1246259

bcharlie
Posts:26

I met with the Surgeon this afternoon and my second thoracotomy is scheduled for Thursday 9 Aug 2012. The surgeon told me that if the lesion is Adenocarcinoma again, he would consider it to be spread from the original and do a Pneumonectomy. He is concerned that with the lesion only being at (8 mm) and with scar tissue from the last lobectomy, it might be hard to locate and he will have to decide what he will do then.
I must admit that I am not looking forward to doing this again. I am now that guy that will tell everyone how lucky you are to have your cancer caught at 1A but, also remind you that although unlikely, it can come back. Be diligent with your follow-ups.

Charlie

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Reply # - August 1, 2012, 05:12 PM

double trouble
Posts: 573

Oh Charlie! I am so sorry you are having to go through this. You will be in my thoughts. Im hoping for the best possible outcome. Please keep us posted on your progress.
Debra

Reply # - August 1, 2012, 06:34 PM

Dr West
Posts: 4735

I'm also sorry to hear that. Yours might be a case that would be managed differently by different people, so a second opinion might be a helpful consideration, especially since the decisions you're making now are irreversible.

-Dr. West

Reply # - August 1, 2012, 07:52 PM

catdander
Posts:

Oh Wow Charlie, I'm so sorry to hear this. I hope you give Dr. West's words some thought. D almost had to make the decision of whether or not to have a second thoracotomy.
Keep us posted,

Reply # - August 1, 2012, 07:56 PM

bcharlie
Posts: 26

My Oncologist first recommended a resection. I followed up with my Pulmonologist and he though that we needed to find out for sure what this was. The Surgeon was on the fence and just said that this was going to be difficult to find. I really do not know what else to do or who else to see. I wonder if there would be anything to gain to give more time to see if it grows more..........

Reply # - August 2, 2012, 08:45 PM

Dr West
Posts: 4735

Perhaps. But there are other thoracic surgeons, or perhaps oncologists with a lung cancer specialty who could provide a perspective with some more time to solicit opinions.

-Dr. Wesat

Reply # - August 4, 2012, 04:47 PM

laya d.
Posts: 714

Hi Charlie:

I just wanted to pop in and wish you the best of luck. . .

Also, just wondering if anyone has suggested ablating the nodule or maybe some sort of targeted radiation as opposed to surgery?

Please keep us posted. . .

Laya

Reply # - August 4, 2012, 08:46 PM

Dr West
Posts: 4735

There are perhaps very individualized situations in which radiofrequency ablation could be appropriate, but it is associated with a very real risk of side effects and is definitely not a standard approach. Moreover, in a situation in which the diagnosis of cancer hasn't been established, most (good) doctors would be very reluctant to do an intervention, especially one associated with real risks, for something that hasn't been demonstrated to be a cancer.

I think stereotactic body radiation therapy (SBRT) would be a stronger option, as there is far greater momentum and more data to support this approach nowadays for a small node-negative lung cancer (and one big advantage is that it would preserve the vast majority of the remaining lung on that side), but that too is something where we'd definitely prefer to have a biopsy proven cancer.

-Dr. West

Reply # - August 18, 2012, 06:29 PM

bcharlie
Posts: 26

On the 10th of August 2012 I underwent a (RL) Thorachotomy to find and identify an 9mm nodule that had shown growth over the last 4 months. The nodule was located removed by wedge resection (margins clear) and identified to be Adenocarcinoma. The nodule was ruled to be Stage IV Metastatic Spread from original site. I was released from hospital this morning and will meet with my oncologist the first week in September to get started with Chemo.

Will get back with you as soon as I know more and feel better.

Charlie

Reply # - August 18, 2012, 08:33 PM

Dr West
Posts: 4735

I hope you recover well, and quickly. We'll be here when you hear more and will be happy to try to field questions or just provide support when you need it.

-Dr. West

Reply # - August 18, 2012, 08:33 PM

Dr West
Posts: 4735

I hope you recover well, and quickly. We'll be here when you hear more and will be happy to try to field questions or just provide support when you need it.

-Dr. West

Reply # - August 20, 2012, 10:07 AM

laya d.
Posts: 714

Hi Charlie:

Thank you so much for your update and I wish you a speedy recovery. Please keep us posted on how you are doing. I hope/wish/pray that what they found was a single precocious met that now has been done away with via surgery. . .

All my best to you always,
Laya

Reply # - August 20, 2012, 10:48 AM

catdander
Posts:

Hi Charlie, I hope you are recuperating a little more each day from surgery. I know 10 days out is not much when talking about a thoracotomy so give it lots of time to heal. I am keeping you in my thoughts and hope you have some support on your end. You know you have tons of support here on Grace.
Janine

Reply # - August 26, 2012, 08:34 PM

bcharlie
Posts: 26

Well time is passing slowly but, I get a little better eaqch day. The only thing different about this recovery over last time is that I have a lot of fluid in my lung. Everytime I bend even slightly, I have a coughing fit and I get feell myself coughing up a light weight fluid. It seems by the end of the day that I have coughed up most of it but, have to start over the next morning,

Charlie

Reply # - August 27, 2012, 02:34 AM

certain spring
Posts: 762

Glad you are feeling better.
I haven't had surgery but have learned some very useful techniques from the lung nurses to help bring the fluid up.

Reply # - August 27, 2012, 06:40 AM

catdander
Posts:

Hi Charlie, I'm glad you're feeling better as you go and hope you are able to get rid of the fluid. Have you spoken to a nurse or respiratory therapist about things you can do about the fluid? It would be worth a call I'm sure.
Janine

Reply # - September 22, 2012, 03:14 PM

bcharlie
Posts: 26

I started a regimen of Cistplatin/Alimta on the 13th of September and I must say that I have hated every second of it. I dread the next three treatments and yet I know that there is no reaqsonable choices. I hate to complain knowing how much worse others have been through and are going through but, other than pain, my two Thoracotomies never made me as sick as Chemo. God, how tired I grow of Cancer and how bad I hate it.

Charlie

Reply # - September 22, 2012, 03:36 PM

marisa93
Posts: 215

Charlie,

I am so sorry you are going through this. Complain all you want, you have every right to as nobody should have to deal with cancer! Hang in there and know you have a lot of support here. Best wishes...

Lisa

Reply # - September 22, 2012, 03:43 PM

JimC
Posts: 2753

Bcharlie,

I'm sorry to hear the new regimen has been so tough. The only suggestion I can make is that you should not be reluctant to notify your oncologist or his/her staff about all of your side effects. Management of chemo side effects has become quite sophisticated and effective, so I would recommend giving them every chance to help reduce your discomfort. Good luck with the remaining treatments.

JimC
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Reply # - September 22, 2012, 07:39 PM

Dr West
Posts: 4735

I'm sorry to hear how hard it's been. I'd just say that if it becomes so unmanageable you can't count down the days, it's reasonable to switch from cisplatin to carboplatin. Many people just can't get through the cisplatin, and a carboplatin-based doublet can still potentially be valuable in this setting. Good luck.

-Dr. West

Reply # - September 24, 2012, 06:02 PM

laya d.
Posts: 714

Oh Charlie. . . I'm so sorry about how crummy you are feeling. I've been through this with my Mom and it's really hard given that you've just also gone under the knife. Hang in there (I know, easier said than done) - - better days lie ahead!

Much Love,
Laya

Reply # - October 7, 2012, 07:40 AM

bcharlie
Posts: 26

I have pretty much felt like my old self the last 10 days with the exception of a great amount of shortness of breath. I don,t know if this is from all of the surgery on my lung or chemo or a combination of both.

I have been wondering and researching the stage of my cancer. My doctor say stage 4 but, I am still unclear. No node involvement and spread from upper lobe to lower lobe in the same lung. Both cancers have been very small. I don't really know how to feel about all of this. If I truly have stage 4, then with few exceptions, the prognosis is not very good. I want to make decisions about how I persue the rest of my life. Do I go back to work? Do I just try to enjoy the rest of my life while I feel realtively good? These are some of the things I wrestle with.

I want to hear good news but more than that I want to hear what is the most likely scenario.

Charlie B.

Reply # - October 7, 2012, 08:48 AM

Dr West
Posts: 4735

To be honest, there are ambiguities in the staging system for situations like this. In most cases, a cancer nodule in a separate lobe of either the same lung or the two different lungs will have spread as a metastatic process and follow a progression along the lines of stage IV. On the other hand, it's possible for a separate cancer to have emerged independently, in which case a person might have two independent early stage cancers that would each have a chance to be cured. Finally, the staging system technically considers a nodule in a separate lobe of the same lung as T4, stage III disease, but that is largely because many of these are slow-growing bronchioloalveolar carcinoma tumors. It's debatable whether surgery could be expected to be curative if someone were to undergo a pneumonectomy for cancer in two lobes of the same lung.

If it's thought that the cancer actually spread from one lobe of the lung to another, then that metastatic spread is really the same process as having it spread to a lobe of the other lung. In other words, that underlying process is consistent with metastatic disease. However, with a delay between the initial tumor and a later cancer lesion appearing, and with no evidence of disease right now, you'd expect that even if it is metastatic, the time line will be quite a bit longer than the general numbers for stage IV NSCLC.

Good luck.

-Dr. West

Reply # - October 7, 2012, 09:25 AM

catdander
Posts:

Hi Charlie,

That's a awfully difficult conversation you're having with yourself. Dr. West said if it's 2 cancers you may well be cured, if not it's a very slow process. Either way you're likely to live longer than many of us and we all know how expensive that's likely to get. Just a personal observation, I believe my husband would be less depressed if he'd been able to go back to work after his surgery. But with surgery, diagnosis, and treatment all happening within 3 weeks he lost that ability the day of surgery.
In a moment life becomes a different animal. I can't imagine the tug of war that must be happening within. I'm so sorry you're going through this.

All my best to you,
Janine

Reply # - October 7, 2012, 12:24 PM

laya d.
Posts: 714

Hi Charlie - -

I'm just happy to read that you are feeling a lot better than you have been recently. I hope you continue to feel well for a very very very very long time.

Laya

Reply # - October 7, 2012, 04:00 PM

double trouble
Posts: 573

Hi Charlie. I struggle with the work issue too. I'm going stir crazy sitting around the house, but I wonder what I can even offer an employer in the way of dependability and productivity. As I look back, I've had daily appointments for weeks at a stretch, I've felt great, I've had to rest on my way to the bathroom, I've had to avoid crowds, and on and on... you know how it goes. How much would I really have to offer an employer right now anyway? I hate it.

I also know how confusing staging can be. Technically I guess I could have been called a stage 4 right from the beginning. I think I might be better off now if they had, but who knows. I think if you feel like working you should. I'm hoping you're cured. You deserve it after all you've been through. Make your final decisions and plans now, get it over with, file away the paperwork, and get on with enjoying your life. Everyone, healthy or not, should probably do that anyway, right?

I'm so happy to read you're feeling better. I can't imagine how hard the recovery is. And I'm really glad you have been updating us regularly. I like hearing how you are doing.
With love,
Debra

Reply # - October 8, 2012, 01:56 PM

blue skies
Posts: 69

I think everyone finds Cisplatin VERY challenging and I agree with Jim C: Complain to your oncology team and don't pull any punches. They may be able to make a bid difference in managing the side effects. Good luck. I'll be watching for updates!

Reply # - October 25, 2012, 04:52 AM

bcharlie
Posts: 26

I have now had two treatments and getting ready for my third on the first of November. I hate to say this but, upon reflection, I will admit that the Chemo has not been nearly as bad as I expected. The only real side effect has been "Extreme but, manageable Fatigue". I hate to say this only because as soon as I do I the side effects will get worse but, maybe not.

My biggest problem is that I am "Sick" of "Cancer".

Thanks for all of your support.

Charlie

Reply # - October 25, 2012, 04:56 AM

bcharlie
Posts: 26

One more thing that I have forgotten to mention in the past and does not really seem to ever come up, Cost: $15,000.00 a treatment!!!!! "Cance Ain't Cheap"

Reply # - October 25, 2012, 07:34 AM

marisa93
Posts: 215

Hi Charlie!

Cancer is definitely not cheap! Having it is bad enough and then the cost of treating it just makes it worse, ridiculous! Good luck w/your next tx and glad to hear you are managing the fatigue.

Best wishes,
Lisa

Reply # - October 25, 2012, 05:30 PM

Dr West
Posts: 4735

I do agree that nobody is prescribing Alimta because it's a bargain (it isn't). But I'm glad you're feeling pretty well through your treatment. Please keep us posted.

-Dr. West

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