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my mom was dx with a pancoast tumor stage 3b if anyone knows anyone with this type lung cancer please let me know i could really use the support and information
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pancoast tumor
- By nanroy
- Posted October 8, 2009 at 9:40 pm · 15 replies
- In Family members and caregivers
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15 replies
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- By texaszan
- Posted October 9, 2009 at 1:13 am
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I know about it. It's what my husband had. What do you want to know? Pancoast refers to the location of the tumor which is high up in the upper apex of the lung. These tumors are somewhat rare and used to be considered extremely deadly, but now some of them are being cured. The reason they are so difficult is because they are high enough to be mixed up with the bundle of nerves called the Brachial Plexus. Sometimes that makes surgery difficult but not always. I hate to tell you this, but they do have a somewhat lower survival rate so your best bet is to get your mom to a major cancer center right away. What they will probably do is chemo and radiation to shrink the tumor and then surgery if possible. This can be a very effective treatment but once again, a major cancer center is your best bet. If you have any other questions please drop me a note and don't be discouraged by the fact that my husband died recently. There is another guy on the site with a pancoast and he's doing just fine. The key is prompt, aggressive treatment and diligent follow up. Good luck with your dear mother. Cancer is a journey for sure but there is hope. Our oncologist told us they are now curing some 3B's so fight the good fight and she can be one of the winners.
- By Kasey
- Posted October 9, 2009 at 9:51 am
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I am a 5 year pancoast tumor survivor. I know of an 11 year survivor and an 8 year survivor and an 18 year survivor!!!! Texaszan gave you a great overview of just what a pancoast tumor is and its complexity. Also the GREAT advice to get to a major cancer center. This type of tumor takes very precise treatment - not the run of the mill LC. That does not suggest in the slightest that ANY LC is merely run of the mill. I was told early on to find a doctor who has seen and treated pancoasts. Please contact me if you want/need more info.
I was dx in September 2004. I received chemo and radiation and after 4 - yes 4 opinions - found a gifted surgeon and I had my right upper lobe removed in January of 2005. Clean scans since. In fact, I go next week for my checkup. I am hoping to receive te same news.
There is much hope - keep digging.
Kasey
- By frenchy
- Posted October 9, 2009 at 12:17 pm
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Diagnosed in July of 05...tough little monsters they are but they just keep getting me back to "safe" after numerous rounds of Chemo. I do also have an oncologist that deals with such tumors and mine is unoperable but if I can remain "safe" I will take it. Best of luck, any questions don't hesitate to email me.
- By nanroy
- Posted October 9, 2009 at 11:58 pm
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I am so sorry about your husband. when your husband was first dx what stage was he? where was he treated? DID HE HAVE EXTREME PAIN? HOW LONG WAS HE treated for the cancer? Did the dr. tell you the truth each time they talked to you? Sorry for all the questions. i would appreciate any that you are willing to answer. Thank you again for responding to me. nan
- By nanroy
- Posted October 10, 2009 at 12:03 am
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thank you kasey for responding to me. It is nice to know we are not alone in this fight againt cancer. I am so glad you are doing so well. continue to fight you have proved that you can
- By nanroy
- Posted October 10, 2009 at 12:18 am
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thank you frenchy for responding to me. your story as well as the others has helped me to see there is hope and we are not alone Just the word cancer is just so scary and then you are dx with pancoast and the md tells you he only has 2-3 a year and it makes you feel so alone. I only want the best treatment for my mother . when you are new to this it helps to know what to ask and to have knowledge of the illness to fight it with everthing you have continue to stay well.
- By nanroy
- Posted October 11, 2009 at 2:27 pm
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my mom starts chemo and radiation tomorrow so please be in prayer for her and we will also be in prayer for each of you
- By frenchy
- Posted October 14, 2009 at 2:46 am
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Please stay in touch and let me know how your mom is responding to treatments...she will be in my prayers.
- By andmegab
- Posted October 14, 2009 at 11:00 pm
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keep your chin up. i was dx 3b pancoast in april last year. took me a long time (13 weeks) to find a team that i felt really understood about pancoast tumors so that we could begin treatment. did the chemo/radiation thing before surgery. it was so effective that when they operated on me, there was absolutely NO spread, and NO living cells in the tumor! the doc keeps telling me "cured", but im too scared to believe him. i had lots of complications post surgery, and am on blood thinners, but am back to work 35 hours a week, and all this with NO support from hubby whatsoever. your mom has you. she is a very lucky woman. i will keep her in my prayers, hoping she has just as good of an outcome as i have had, and that God gives you strength as you walk this journey with her.
the chemo/radiation was the worst part. in comparison, the surgery is much easier. be sure to come here often as she goes thru the chemo/radiation as im sure you will have lots of questions.
god bless you both,
deb
- By jenthibodeau
- Posted November 10, 2009 at 6:55 pm
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My mom was just diagnosed yesterday with a pancoast lung tumor (3B), they are not recommending surgery, because of the risk and the tough position of the tumor. They want to treat it with radiation / chemotherapy. It is in at least 1 lymphnode. Does anyone know of any success with the surgery? She is in extreme pain! Thanks for any info. anyone can provide.
- By jenthibodeau
- Posted November 10, 2009 at 6:56 pm
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Had your husband's cancer spread to the lympnode?
- By texaszan
- Posted November 11, 2009 at 12:35 am
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My husband was first staged as 3A. He did not have lymph involvement. He did have extreme pain from the tumor pressing on nerves.
- By nanroy
- Posted November 11, 2009 at 1:49 am
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I am so sorry about your mother. My mom was in extreme pain and on morphine and oxycodone as well. Untill she took rad and chemo. She now does not have as much pain but went down after one week of both and now chemo and rad are called off for three weeks. We find out next week what our next course will be. It does not look good. Hospice has been mentioned but we go back to the md. tuesday and then we wil know. I sure hope your mother will have a better outcome. I research pancoast tumor on the net so if you have any questions i can help with i will sure try. This site is great and the people on here are so helpful. You will find comfort in others that are in the same situation. nan
- By andmegab
- Posted November 11, 2009 at 11:21 pm
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hi jen,
sorry you had to find us this way. yes, my pancoast tumor was successfully removed after chemo and radiation. in fact, the chemo and radiation were so successful that they had completely killed the tumor and thus far, there has been no spread. get a second opinion about the possibility of surgery, and i pray that you and your family experience the same degree of success with the chemo and radiation i had. it wasnt an easy road to hoe, but it did the trick for me.
ill be keeping you in my thoughts and prayers, and if i can help at all, let me know. i dont get online as much as i used to, but ill try to keep an eye out.
god bless you and your family,
deb
- By jenthibodeau
- Posted November 12, 2009 at 10:23 am
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Thank you everyone for the feedback...
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