Howdy folks ... A promised update and a question.
Had my upper right lobe removed via VATS on 21 May 09. Recovery has been more brutal than I was led to believe, but then I guess that's just me ... we're all just "me's." *s* Can't imagine I'll ever wear a bra again (good thing pre-21 May, now not so sure ... *lol*).
Anyhow, stage I, no spread to lymph nodes, and the surgeon said he got it all. I'll be put on a lifelong CAT scan "program." I asked about checking in with a medical oncologist for adjuvant chemo, but he said not necessary. (It so happens that Dr. West is at the hospital/medical center I'm going to, so I still might make an appointment with him.)
This is all the good news. One thing the surgeon said over the phone (and Monday I'll get to talk to him again about this) is he said my lungs were "twitchy," meaning "the likelihood of cancer returning is somewhat high." I don't recall ever reading such a "prognosis" or "prediction" before on this or any other site or "in the literature." Wondering if someone with "more experience" than myself might have a sense of what he means by that?
Also curious to know if those of you with stage I who had adjuvant chemotherapy had to press to get that or if you had other circumstances that guided toward that therapy?
Anyhow, decent news at least. Will be glad when the funky aches, pains, and sleep issues/positions are ironed out. Yowza ...
Happy weekend to all of you ... Dana. *s*
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URL VATS Lobectomy Update & Q on "Twitchy Lungs"
- By Again
- Posted June 5, 2009 at 9:16 pm · 12 replies
- In Non-small cell lung cancer - Stage I
- Shared with the public
Explore topics in this discussion:
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12 replies
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- By Chum
- Posted June 6, 2009 at 10:10 am
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Never heard of twitchy lungs, so I googled it and found that it has something to do with reacting to cold air. Google it and read the citations - though nothing I could see seemed to be relevant to your case.
As for the adjuvant chemo - I pushed hard and was told then (4.6 years ago) that it was only recommended for those 1b or above and not for 1a. Since then they have looked again at the data and now do not recommend it for any Stage 1 people. I posted a message from my Sloan-Kettering connection (great surgeon - Bernard Park) who talked about the change in staging criteria and the adjuvant decision. If you can't find it, message me and I will share.
Courage
Chum
Courage
Chum
- By peyz33
- Posted June 6, 2009 at 10:31 am
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I strongly believe in adjunctive chemo - it sucks but so does a reoccurrance of the cancer. Don't take any chances - your surgeon - no matter how skillfull he is is not GOD. All you need is one tiny cell to be left behind...my surgeon said he "got it all" and insisted that I have adjunctive chemo - just MY opinion - and I am no expert - just another survivor trying to live as long as I can.
Karen
- By misself
- Posted June 6, 2009 at 3:10 pm
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I had an upper Right lobectomy on April 24th 2009.My surgeon recommended we consult with an oncologist,Dr.Clay,here in Meridian,Ms.I am a nurse and know Dr.Clay to be excellent.I had Stage 1a with less than 2cm.and clean lymph nodes.Dr. Clay went and looked at my cancer cells for himseif.He recommended 6 treatments,3weeks apart.He says usually he wouldn't,that surgery got it all,but my cells were poorly differentiated.Due to a heart&lung episode,I will see the surgeon6/9.I know what you are going through recoverying,sort of.It's rough.Dr.Clay says he can give me another 5% chance of 5 year survival .For me after all this I'll take it.Hope this helps you think about your options,whil not telling you what to do.It is your body,and you should think,read(I prayed too)and follow your feelings.Good luck.My grandson and his friends visit a lot.They are teens,so I wear a Bra.At night I am ready to throw a party when the Bra can come off(Lol)
- By HighlandGuy
- Posted June 6, 2009 at 5:36 pm
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Hi Dana and Chum,
I don't know if you noticed but at the recent meeting of ASCO, thee was an interesting article on Pre-operative Chemo vs. Adjuvvent Chemo, compared with no chemo.
The article is title on the internet: "ASCO: Small Nudge for PreoperaChemo in Non-Small Cell Cancer." (Sorry but my computer didn't print out the full address.) It is written by Charles Bankhead, Staff Writer for Medpage.
This is one study and doesn't determine by itself what should be the accepted protocol.
I would be surprised if there aren't other more comprejemprehensive articles on the study.
HighlandGuy
- By Again
- Posted June 6, 2009 at 6:18 pm
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Great info from every darn one of you. Very appreciated!! *s* Seems like I could have done some of that research myself, but it's kind of a relief that y'all have given me a head start. Sometimes I just get exhausted with the research.
Will talk soon. Peace and well wishes to every last one of you. Your support and expertise (yes, y'all are experts to a great degree) is helping me tremendously. *s*
Dana.
- By AlisaJS
- Posted June 7, 2009 at 3:37 pm
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Hi Misself,
I had a left upper lobectomy April 20 for stage 1 broncoalveolar cancer (BAC), no chemo recommended by the surgeon. However, I will meet with an oncologist in the near future. Was your cancer BAC? I need to be informed before the meeting.
Thank you and God bless.
- By Sallyness
- Posted July 19, 2009 at 11:42 pm
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I had the lower lobe of my right lung removed the more invasive way on 3/24/09. I, too, am staged 1A with NSC adenocarcinoma. My surgeon intially told me I did not need follow-up treatment so I did not need to see an oncologist. I told him about things I had read on this web site, and informed him I planned to see an oncologist. My surgeon recommended an oncologist whom he works closely with and then I found a very well known second oncologist whom I wanted to go to see for a second opinion. Both oncologists told me the same thing ... in my case there was no need for an treatments. The second oncologist (the one I found and knew of prior to my surgery) told me I had to be very closely monitored for the rest of my life ~ especially due to my family history of lung cancer. He gave me an hour and a half to discuss everything ~ including telling me the chances for reoccurance. I did not have to ask him one question (and I had a full page of questions), as this doctor answered them all for me without my even asking. I have decided to stay with the oncologist I chose ... not the one my surgeon suggested. I will get my first post-op CT scan in a few weeks.
As to the bra situation, I found that Spanx makes bras now. They are THE most comfortable bra to wear right now. The come without underwire as well as with underwire ~ and they close in the front and also come in the sportsbra style. They give and do not irritate on my back. I still am not real comfortable with a bra on for long periods of time, but if I need to wear one (and at my age I should!), Spanx is the only one I will wear now. Actually, now, my discomfort is more nerve pain on my breast and around it. The Spanx bra is helpful there as well.
Good luck and keep us posted.
- By myanjoshmama
- Posted July 30, 2009 at 8:52 am
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My mother had URL removed via VATS on 7/2/09 at NY Presbyterian. She just went for her follow up last week and she does not require any chemo. Her stage was 1b since the tumor was 3.5. She may go into a study depending if the agents in the tumor qualify. One is for a vaccine and one is a pill. Both are preventive. Will know more shortly if she qualifies for the study.
- By misself
- Posted July 30, 2009 at 2:15 pm
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I missed your post.Sorry Aylissajs,I landed in the hospital with problems in may,Heart led to Chemo Dr deciding I was at to much risk of atrial fibrillation event being triggered by either the steroids or the chemo drug itself.Although they ssaid my cancer was adeneocarcinoma ,they said the cells were poorly differentiated which was the reason for the chemo.However now I am on watchful waiting.I think poorly differentiated means they are not sure(the cells) what they want to be when they grow up.Lol I try not to dwell on this.AndiB
- By misself
- Posted July 30, 2009 at 2:27 pm
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Dana,I find I sleep more on my right side,the side they cut.I tend to sleep about 4 or 5 hours sit up and wiggle,watch an hour show then go back to sleep.I was operated on 4/24/09.Wearing a Bra ia still an issue.I prefer a loose old one.Am going to try spanx,recommended above.Thankyou Sallyness,your posts are always helpful.I wonder why if they cut half way around from the back and not the breast we can get pain?If my lower shoulder blade hurts then so does my breast.Must be on the same big nerve bundle from the spine I guess.AndiB
- By kram
- Posted September 4, 2009 at 9:17 pm
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Dana,
Re: Consulting an oncologist. My surgeon said it wasn't necessary to see one, but I decided it would be better to have one on my "team." A surgeon knows about cutting, but isn't necessarily knowledgeable about the cancer. My oncologist is now the one who will be with me on my five-year journey through the required CT scans.
By the way, I asked him about chemo, and he said that clinical studies have shown that there are no benefits to chemo for folks with stage 1A, and that the side effects could cause things that are worse than the cancer itself.
Are you seeing an oncologist?
And, I am with all of you on the bra situation. I'm pretty well-endowed, which increased my healing time. For weeks, I felt like my entire torso was encased in cement. Wearing a bra is now more torture than it was before, and I can't wait to take it off. Thankfully, I telecommute, so I don't have to wear one at home!
- By Jazziejudy
- Posted September 5, 2009 at 1:52 pm
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I was diagnosed with nsclc on 4/05, had less than a 2 cm tumor resected, no surrounding tissue or any lymph node involvement (they checked 7) and was confirmed 1A with no recommendation of chemo by thoracic surgeon or oncologist I visited. I had four years of clean CT and PET/CT scans and sure enough - on 5/09 there is cancer back in same lung. I might mention that I had post thoracotomy neuropathy for the entire time, take neurontin 3 times a day, have had maybe 15 intercostal nerve injections with my pain management doctor and have never been able to wear a bra since the original surgery! I've found a wonderful oncologist from UCLA and have just had my second chemo and am tolerating it very well. I'm 68 and own a travel agency and still work 3 days a week and am glad to be alive under any circumstances. However, looking back I sure would have done chemo but no one was recommending it. I have a huge family history of lung cancer and had had my last cigarette 38 years before my diagnosis, so who knows...keep the faith everyone.
Judy
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