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Pancoast tumor survivors

Diana Updike
Posts: 3
Joined: Aug 2009

Please, looking for survivors of this type of lung cancer.

dfourer
Posts: 1
Joined: Sep 2009

Are you still looking for pancoast tumor survivors? I am in Chicago, IL

nanroy
Posts: 2
Joined: Sep 2009

how are you doing?

nanroy
Posts: 2
Joined: Sep 2009

my mother was just dx stage 3b possible 4 do you have any good imformation of this tumor it seems really rare her md only treats 2-3 a year do you know anything about stageing

bpearson
Posts: 13
Joined: Jan 2012

Hi Diana, I so hope that you will answer this. My husband--age 56-- has been diagnosed with pancoast tumor in Oct. of 2010. Everything is going against him (horners syndrome, above right lung, tumor was in spine, inoperable). He has been given the "big guns" of high doses of chemo and radiation--- which took his back pain away (thank God!). A month later he went for a check up and couldn't get a CAT or PET due to inflammation of his larnyx and breathing tube--- they had to get very close to that area with radiation. He has the next appt. for Jan. 5, for a CAT and PET and we will be given the results on Jan. 10th. He was regaining his strength and stamina, through minimal exercise, but has always (since diagnosis) felt like he was breathing through a straw and has labored swallowing. Maybe this has improved??? But now the last few days he has had quite harsh pain in his upper chest area--- front and back. Naturally, we are concerned and anxiously awaiting to get the results of his scans. Please communicate with us as we need to hear of success stories. Thank you, Sincerely, Bonnie Pearson ---- bpearson57@gmail.com

AlanRinHBG
Posts: 120
Joined: May 2011

Hi Bonnie, Did you mean to say Oct. 2010 or was it 2011?? I'm a pancoast survivor of almost 3 years. I understand pancoast pretty well. Can I help?

bpearson
Posts: 13
Joined: Jan 2012

Yes Alan, I did mean Oct. 2011... getting my years mixed up. I am sorry about your hardship, but no matter how many "extra" years you get, you always want more. We are new in this fight. We were not told what stage this tumor was in, but we do know that it was measured at 97 cubic centimeters... Steve has suffered since April, 2011 with a very painful upper back, with countless trips to the chiro. That was followed with laryngitis in Sept. for 5 weeks before he went to the Dr. It made the dr. sit up straight when he mentioned, that he didn't know if it was related to his throat problem, but his right eye lid was droopy--- well, of course, you know what that means. A few days later we are regular visitors at a hospital, with radiation (7 weeks, with the "big guns") and chemo (1 week and 1 day at the beginning and then again at the end-- again the "big guns") after we were told that it was inoperable. For 3 full weeks (over Christmas) he had no pain, good appetite, and his stamina and strength was going forward slowly, but steadily. But throughout during and after the treatment he feels like he is breathing through a straw and swallowing is labored, due to the pressure of the tumor on this area and/or the radiation was directed as close to that area as they dared without ruining it. Now, that brings us to today.... the last 5 days he has suffered brand new pain in his upper chest area--- front and back, and both of his arms and hands. This is terrifying to us as the pain had dominated his right body mostly and now it is in both sides. Tomorrow we go for a CAT and PET and will get told the results on Tues. the 10th. Thank you for any tips or/and encouragement you can give us. We hope that you are enjoying a good quality of life. Bonnie

AlanRinHBG
Posts: 120
Joined: May 2011

Hi Bonnie, That all sounds really familiar. Mine was upper right and involved spine in T1. I know that no 2 cases are alike but these are pretty close if you ask me. I did 35 tomo rads and the "heavy hitter" chemo too. cisplatin and etopocide. after that 7 weeks, I got re-evaluated for surgery. couldn't be done without risking paralasys because of spine and the bone damage. I went to Cyberknife and 6 taxotere treatments. That pretty much did it in. I've been in remission since Jan. 2010. I go for scan in 2 weeks to follow up. I feel confident about staying in remission. There are after effects that still linger. Nueropathy in my right arm is about it though. It's liveable, could have been way worse, right? I know of a few survivors of this who have many more years than me. The surgery to remove a pancoast tumor is pretty brutal and I'm actually happy not to have gone through it. There are lasting effects from that too. Most of what he's feeling now is probably caused by the radiation and will subside over time. my tumor is reduced to scar tissue and is visible on CT. I would just say to be patient, don't expect to recover overnight, treatments are invasive and aggressive and mostly successful. You can ask about post treatment physical therapy. I did and it helped alot. Good luck with the scans , I'm sure there will be big improvements. It's a bumpy ride but it gets better.

bpearson
Posts: 13
Joined: Jan 2012

Alan, you must tell me about Cyberknife and Taxotere.... i have never heard of either of those words. Steve had the PET and CAT today and now we wait until Jan. 10th to meet with the two dr. and get results. I am glad of your recovery... it has given us hope--- something we really needed. Thanx, Bonnie

bpearson
Posts: 13
Joined: Jan 2012

Alan, I looked up both of these words and now have something to bring up with our drs. if they looked puzzled on what to do next. We will rest easier this long weekend, because of you. Bonnie

bpearson
Posts: 13
Joined: Jan 2012

Alan, I looked up both of these words and now have something to bring up with our drs. if they looked puzzled on what to do next. We will rest easier this long weekend, because of you. Bonnie

AlanRinHBG
Posts: 120
Joined: May 2011

Bonnie, Cyberknife saved my life. It is surgery without the surgery. Taxotere, a second line chemo for me. Let me know what happens. Best wishes from me.

bpearson
Posts: 13
Joined: Jan 2012

Hi Alan and all, yesterday Steve got the results from his chemo and his radiation drs. from the CAT and PET scans of the previous week. They both said that the cancer is gone!!! What is left his residual matter (remains of the shunken/dead tumor. The radiation dr. said that he saw a little inflamation there, but thought that it was still from the treatment, so he was not concerned. Lots of tears, but these were from happiness. He will have another CAT in 2 months as part of the follow-up. He has aches and pain, but we could also call them normal "old age" problems. His hands are very sore (maybe arthritis), but also very weak. Now the focus will be to get his strength back. We hope that this brings hope to anyone with that dreaded pancoast tumor. Thank you God! Sincerely, Bonnie and Steve

bpearson
Posts: 13
Joined: Jan 2012

Hi Alan and all, yesterday Steve got the results from his chemo and his radiation drs. from the CAT and PET scans of the previous week. They both said that the cancer is gone!!! What is left his residual matter (remains of the shunken/dead tumor. The radiation dr. said that he saw a little inflamation there, but thought that it was still from the treatment, so he was not concerned. Lots of tears, but these were from happiness. He will have another CAT in 2 months as part of the follow-up. He has aches and pain, but we could also call them normal "old age" problems. His hands are very sore (maybe arthritis), but also very weak. Now the focus will be to get his strength back. We hope that this brings hope to anyone with that dreaded pancoast tumor. Thank you God! Sincerely, Bonnie and Steve

bpearson
Posts: 13
Joined: Jan 2012

Hi Alan and all, yesterday Steve got the results from his chemo and his radiation drs. from the CAT and PET scans of the previous week. They both said that the cancer is gone!!! What is left his residual matter (remains of the shunken/dead tumor. The radiation dr. said that he saw a little inflamation there, but thought that it was still from the treatment, so he was not concerned. Lots of tears, but these were from happiness. He will have another CAT in 2 months as part of the follow-up. He has aches and pain, but we could also call them normal "old age" problems. His hands are very sore (maybe arthritis), but also very weak. Now the focus will be to get his strength back. We hope that this brings hope to anyone with that dreaded pancoast tumor. Thank you God! Sincerely, Bonnie and Steve

AlanRinHBG
Posts: 120
Joined: May 2011

What great news that is. Man, that was quick. Holy crap that was fast!! It's going to still take some time to recover from the treatment, but wow, I'm so happy for you and Steve both. Way to go. Follow ups will be a way of life from now on. I go next week for a CT scan. Hoping for the best. Congrats to you both. Thanks....Alan

AlanRinHBG
Posts: 120
Joined: May 2011

Steve could ask for something for that inflamation to go away faster. A mild steroid is something that can help. Advair has some in it, I used it and still do to help with COPD and the rest. Also, there is physical therapy post treatment to ask about.

bpearson
Posts: 13
Joined: Jan 2012

Alan, we will be thinking of you this next week and hope the results make you smile. We will not be able to get back to you next week, because we are going down to TN for a couple of weeks to see our 2 grands. It will be the second time we see the youngest of 5 months (the first time was at Christmas) This trip has been a part of what has kept us going during this nightmarish journey we were on. We will still think of you because of the hope you have given us. Good thoughts and prayers sent to you. Bonnie

Karenhopeful
Posts: 38
Joined: Jan 2012

I think I have HOrners syndrome. I only sweat on half of my body. Did your husband have that problem? Has it gone away? I also have the underarm numbness and sore shoulder/back area. I have been feeling better after two chemo. But no one could tell me about sweating on only half of my body. I just found out about it by searching today. I am worried that I may have had an incorrect diagnosis. I had uterine cancer and a needle biops said uterine cancer, however I wonder about this Pancoast tumor. Is it only a primary lung cancer, or is it any cancer in that specific apex area of the lung? How is your husband doing? Alan, how did your scans come out? I hope to hear you are both doing well.

AlanRinHBG
Posts: 120
Joined: May 2011

Horners syndrome has some similarities to pancoast syndrome. I've been assured that I don't have horners. I too only sweat on the right half. It's funny when I pointed it out to my Pulminology rehab nurse. She never heard of such a thing. ( I have to try not to work that hard). My scans went great, still no changes next scan 6 months away. The nerve damage that my tumor caused will be with me forever I guess. I've seen a few nuero guys and no help so far. I'm not done looking though and hope someday to get it answered. Anyway, the nerves that are affected by pancoast are behind your collarbone in an area called the brachial plexus. Surgery is difficult if not impossible depending on how involved it is. I haven't heard another thing from the Pearsons., wish they would let us know how it's going. p.s. I don't care about the sweat thing. no biggy.

Loriwannop
Posts: 5
Joined: Apr 2012

Hi Karen,hope you don't mind that I jump into the conversation? I do have Homers have had it since 2007. It really isn't a big deal to me,a little embarrassing at times but its one of the smaller things to live with in the bigger picture.I had a pancoast tumor removed in Jan. of 2008.Besides the one side of my face and neck sweating it's not a big deal.Its nice to fine a site with people with a pancoast tumor who are still living and to be able to hear that someone else knows how I feel or how I'm feeling about something relating to my particular kind of cancer.So hello to everyone.

Karenhopeful
Posts: 38
Joined: Jan 2012

Thanks for letting us know we can live with this.Do you still have pain in your back/shoulder where the tumor and bundle of nerves is located? How large was your tumor when removed? Did you get the numbness under your armpit and down your arm? Did that go away or still with you?

I did get an email from the Pearsons and will post that below.

Loriwannop
Posts: 5
Joined: Apr 2012

Glad I could be of help.When I was first dianoised I couldn't have anyone any wear to answer some questions.It makes be feel a little better that someone knows how I feel,someone really understands.I hate that someone had to go through what I did,but it helps to know someone made it through and your not alone.To answer some of your questions yes I do still 6 years later have pain in the upper back shoulder area wear the tumor was removed.Most times it's bearable.Actually I think I'm just so use to it now I only notice when it's unbearable.My tumor was large 7cm by 5cm.Some thing like that.It was to large to be removed so I had 43 radation treatments and it sunk to half that size.That with chemo at the same time.It was so hard to do and I nearly gave up,but the thought of not see my new granddaughter saved me.I still have numbness under my right arm.As silly as it sounds that's probably the thing that bothers be the most.Some times it numb but with pain I would ate as an 8 on the good old pain scale.It never last very long ( the pain) and my doctors comment is they removed your breast plate,they cut through nerves,ect.ect.Dont get me wrong I like my onacologist,she helped save my life,and now believes me when I say I'm not going any wear.Well I gone on more then you wanted to know so I'll go for now.

Karenhopeful
Posts: 38
Joined: Jan 2012

Hi Karen, so sorry to hear about your unsettling diagnosis... the drs. that we had were all so trustworthy... I hope that you can find that too. Yes Steve had all of the classic signs of Horners. Now that the treatments have been done since Dec. and we have had 2 excellent follow-ups, we are feeling positive. Steve was considered inoperable, which after you read about that surgery, it may have been a blessing. He had 2 week and 2 days of chemo and 7 weeks of radiation. It kicked his butt, but he slowly regained most of his functions. The 2 good things that have happened is his high blood pressure went down to a healthy normal without meds (I know... weird) and almost all of his voice has returned (despite the dr. saying his vocal cords on his right side were permanently paralyze) This is what he is left with at this point: Quite sore and weak hands (both are about the same, despite the horners was on his right side... all of his muscles are sore (he cut and split all of his wood for next winter... which is a lot, as that is our main source of heat!) and each time he went out was like the first as his muscles do not seem to get stronger and build up stamina---- doesn't stop him though....His back, where the tumor grew is, of course, sensitive as that is where it was damaged from the tumor....he gets severe pains that follow his arm down to his finger tips that passes (about 3-4 times a day--- usually when he is sitting doing nothing??...his breathing is labored, especcially when he exerts himself, but is still bothersome when he does very little (he also has recently been diagnosed with emphizema (sp.) which is a general term that covers a few lung problems??? (so we were sort of comforted by that). He says he can live with all of these symptoms if he can live. He is so amazing. THe info on the computer usually depressed us, until I finally found the sights that the survivors were on. Those drs. and God, of course did an incredible job; we are left with a cloud over my Stevies head, but I guess we all have that! Wish you well as you go through this tramatic time and I hope that you have a strong support system and trust that they sure know a lot about different kinds of cancer, even rare ones. Oh yes, he sweats on only one side of his face--- another non issue for him. Sincerely, Bonnie (Steves loving wife) written and emailed to me on March 20.2012

AlanRinHBG
Posts: 120
Joined: May 2011

Hi to you Karen, thanks for the info. It's nice to know that. I'm still being educated every day about all this. I'm doing pulminary rehab, almost done. Those nurses are so smart about all the function stuff., the meds and all the differences. advair, spireva, and all the other inhalers. The nerve issue in the right arm is a difficult thing. Being right handed, I'm having to learn to be a lefty with alot of stuff. Writing is getting to be almost impossible anymore. It looks like a third grader's writing. It gets frustrating and I become irritatable. I can't press down on a spray can or even shaving cream. I had the dosage bumped up on lyrica and it does help some with pain but nothing for numbness. I guess we're all in the same boat and it's good to know I'm not alone. I heard somewhere that pancoast is less than 3% of all lung cancers. That's not alot but there's plenty of info. I never met in person another survivor of this but a few online. Nice to know all of you. P.S. I think it will never return,just sayin.

bpearson
Posts: 13
Joined: Jan 2012

Hi Alan, we are both thinking of you and hope that "that devil" does not come back to haunt you. ... just keep us up to date on you and your health. We all care and want to know. The chemo/radiation also took a toll on Steves body, but he always says that he can live with it, as long as he can live. His muscles have not improved and will not build up stamina from repeated use, but it does not stop him from getting up the wood supply. His coordination, his stamina and even his judgement skills have been diminished.... though he still does not let him slow him up. I do worry about more chance of accidents out in the woods though. He is enjoying and appreciating his life, just like the rest of us. June, he will have another CAT and maybe a PET.... we just have to have faith that we will get a good report. Take of yourself Alan and all of the rest of you that are struggling with Pancoast. Sincerely, Bonnie Pearson

xmasgirl
Posts: 1
Joined: Feb 2013

hi Bonnie,  I have just found this site, and was in the process of replying to your questions, only to read further and find out your husband has pulled through.  WOW that is incredible.

My name is Fran and I am fromMelbourne Australia.  I was diagnosed with a pancoast tumour 10 years ago at the ripe old age of 45!  It started with a strange 'nervy' feeling down my right arm into my hand.  I was sent for an xray only to discover my diagnosis.

Unfortunately surgery could not be contemplated as the tumour was entwined through the nerves that run from the base of the neck across my shoulder.  I underwent extremely agressive chemo over the next 8 weeks, combined with daily radiation therapy over the same time.  3 months after completing this treatment it was found that the tumour had shrunk enough to attempt surgery.  I had a radical upper lung dissection, with the warning that I would most probably lose the use of my right arm.  This was the least of my problems.  After surgery i was advised that it was successful, that the tumour area came away 'cleanly' and fairly satisfied they had removed the area satisfactorily.

My oncologist then decided that he would commence another 12 rounds of chemo 'just to be sure'.  i only managed to get through half these treatments as i was hospitalised twice with sever fevers.

I see my wonderful oncologist now still 6 monthly, and have remained cancer free.

Hoping all remains great news for you and your husband.

Dansio
Posts: 1
Joined: Feb 2013

Hello 

I am new in this forum.

I am Daniel Stojanoski from Macedonia, writing to you on the behalf of my father.

A few days ago, he was diagnosed with lung cancer. He is dealing with a large tumor that has metastasized. The doctors in my country say they cannot help him any further, due to the metastases he is not operable and due to the excessive weight loss they reckon he would have difficulty in dealing with chemotherapy.

We try to help to him with alternative medicine but his situation is worst.

I am Daniel Stojanoski from Macedonia, writing to you on the behalf of my father.

NON – SMALL  CELL CARCINOMA

Macroscopic appearance:

For pathological analysis was delivered a tight biopsy material which was consist of four small biopsy fragments with diameter of 0,1 – 0,3 cm.

Microscopic appearance:

Microscopic examination on the macroscopic fragments has shown that they are parts of neoplasm with well – differentiated morphology of planocellular cancer which is consist of malignant cells with medium size and eosinophilic cytoplasm and hyperchromic cores arranged in irregular nests.

In addition, focal cells show tendency of keratinisation. In tight inta-celular matrix despite the mononuclear cellular inflammatory infiltrate, was seen a rare seromucoid glands with normal morphology and a small zone of  necrosis and bleeding. Emboluses in linfovascuar space are not found.

Therefore , in submitted biopsy material was found a neoplasm with morphology of good differenced planocellular carcinoma.

 

Dg.  D38.1  Trachea, Bronchus and Lung

J96.1  Chronic respiratory failure

 

Infiltrato pulomos lat. Dex. IRC parcialis, DM II

History and status: Main issues: Pain in the right shoulder and right side of the chest, decreased appetite, lost of weight.

Current illness. All above mentioned issues are 3 mounts before hospital admission . After conducting an X-ray tomography of the lungs, the patient was sent on pulmonary clinic for further treatment. Former history of illness: Diabetes mellitus (3 months) on insulin.

Personal history.  Man, 52 years old, father of two children. He used to work as a mechanical worker. The patient is a smoker, and he used to smoke 2 packs of cigarettes at day. He denied allergy of food and drugs.

On admission the patient was conscious, speacable, oriented in time and space, eupneic and afebrile, proper skin and visible mucosa with normal turgor  and elasticity with out any changes of the skin. LGL in accessible areas are palpated. Patient takes active position in bed and he leaves impression of mild-sever ill patient.

Had and neck. Normal configuration and mobility. 

Eyes, nose, mouth, thorax: Normosthenic respiratory, movable on both sides.

Lungs: On auscultation, vesicular breathing weakened right apical.

Heart:  Heart rate – rhythmic with clearly audible tones.

Abdomen:  At chest level. On palpation soft and without pain.

Liver and spleen can not be palpated.

Urinary tract: succusio renalis negative on bout sides.

Extremities: without edemas and any deformities. 

blood condition ili blood parameters Hb=136g/L    Hct=0.40%   Er=5,0x10^12/L  Leu=20,2x10^9/L  Tr=339x10^9/L

 glycemia 7,6 mmol/L

electrolytes  Na=135mmol/L  K=4.8mmol/L    Ca=3.6mmol/L   inorganic phosphorus=0.9 mm/L

 urea 10,1 mmol/L   Creatine=65umol/L  sedimentation=90 mm/h
 

EKG sinus tachycardia fr110/min

gas analysis pH=7,38...7,46; PaCO2=6,35....4,90;  PaO2=7,4...8,97   kPa O2sat=88,1...92,2    HCO3=28,7...26,6 mmol/L  in partial respiratory deficiency

spirometry FEV1=72%  FVC=59%   FEV1/FVC=128%

Bronchoskopy- The bronchus for the upper right lobe is completely closed from malignant infiltrated mucosa.

Now i gave to him DCA 11mg/kg (he is 49kg 1.65cm heigh)

He takes and B1, black tea and juice but he eats nothing and he lose his weigth more and more

I am sorry for my gramatical errors, if someone knows some metods that can help him please write to me.

 

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