Newly diagnosed and needing hope/info from fellow warriors

[kmelinda]

My fiance, Dean, was diagnosed with squamous cell carcinoma the beginning of June. We are very confused and hurt because he was put at stage 4 because of pleural effusion. I'm confused because the fluid is less then 1cm and does not show any malignant activity on a PET, and the lung cancer is nowhere else. The tumor is located in his left lung where the bronchial enters in it. So, left mainstem, and it's mostly blocking the airway entrance to the lung. The lower lobe has partially collapsed, and he's battling a lot of mucous from the little air movement. The dr is just wanting to do pallative care. But, after reading some testimonies on here and much prayer, we don't want to give in yet. He's only 43 years old. At first, they were going to remove the whole lung, but pulmonary function was not good enough.

Now, you should also know that this lung cancer is a secondary cancer for Dean. He has been battling Hodgkin's lymphoma for the past 5 years. It had been being kept stable in his pelvis area with an oral trial drug until this evil happened too.

Anyways... I know he's a complex case, but have any of you had a similar lung cancer diagnosis? What did you do, etc.

Thank you in advance.

[eric byrne]

Hi Kmelinda,

First off,welcome to LCSC,its a pleasure to meet you,there are many buddies here who,by their cancer journey experiences will help to lighten the load you are carrying.

I am not a Doctor and therefore only able to reflect with you my experience of lung cancer,I had a tumour in the airway to my right upper lung,this had the effect of deflating my lung,there was also local spread to the lymph nodes.I was given neo-adjuvant chemo in an attempt to shrink this tumour in order to allow me to have the tumour surgically removed,fortunately the chemo worked and in Jan 2009 I had a upper right lobectomy, which was deemed at the time entirely successful,I have had since no further treatments.

Following my surgery I went to my GP to ask if I could now return to work,he suggested I did'nt but instead take some quality time out with my wife,since you have only two years left max.I shared this conversation with my oncologist some days later,he was furious with my GP,he said to me, Eric, do you think I have put you through all this, just to give you 2 years?,I am fighting to give you 15-20 years if not a cure.

I have found over my post dx years many other survivors who have been the subject of ill advised comments from GPs and other medical professionals.I am astonished to hear that your doctor could only offer Dean pallative care,and yet I am not in a position to have such an opinion not having a doctorate in medicine or a insight to all his medical records ,what I do have is a fighting spirit who would advocate with Deans doctors to explore every avenue to

help treat his cancer with a ambition to bring his cancer under control if not erradication, that his life is prolonged,this is true for many cancer survivors today.

If you are unhappy with your GPs impasse and after further discussions he still refuses to budge,I strongly advise you to get a second opinion from another GP/Oncologist.

I can recommend to you www.cancergrace.org who have a team of oncologists who will receive specific questions from the public on lung cancer and will reply free of charge to the postee.

My very best wishes to both you and Dean that you have a successful outcome with his treatment plan,remember you are not alone now, we are here to support you every step of the way.

[Donna G]

Welcome to our support community! Glad you found us. I was diagnosed with Stage 3 lung cancer December, 1997. I am still here and Cancer free after my treatment. It was not easy but it worked for me. I hope you get another opinion. Also go to the web site Grace and ask out friend - a Doctor -- there for his opinion.

Keep us posted ! Best wishes.

Donna G

[dianew]

Welcome to the club no one wants to belong to - but I am glad you came here. I have had squamous cell twice now - the first time in 1998 and again in 2008. My tumor - in both lungs - was in approximately the same position as Dean's, but I did not had pleural effusion. I was not able to have surgery the second time, but did have chemo/radiation. Everyone is different, but I am surprised that no treatment plan was offered. You didn't say if Dean's oncologist was a lung cancer specialist or not - but you might at least want to consider getting a second opinion from someone who specializes in lung cancer. Like Eric, I have had doctors suggest that I probably only had a year or so -- I am sure glad I didn't listen to them!

In the meantime, I would definitely second Eric's suggestion of going to cancergrace.org - there is some great information and very knowledgeable and caring people.

I hope you come back whenever you have a question or even just to vent. People here are very supportive.

Diane

[cat127]

Given his lymphoma, I'm curious if he is being treated by the same doctor caring for him for that cancer? If so, I wonder if a doctor who specializes in lung cancer may have a different plan. The idea of treating stage 4 lung cancer as a chronic disease, that you may not cure but you may be able to treat for many years, is relatively new in the lung cancer world. A good friend of mine that is an oncologist (though working in drug development, not treating patients) was very surprised when my sister was first diagnosed in 2007 and he was paying more attention to lung cancer at meetings, mainly because of me. He was shocked at how many more drugs there were for treating it and how much longer they were able to keep treating it. That is very evident by the folks you will see on this board.

I would second the recommendation to go to cancergrace. And I would also recommend seeing an oncologist that specializes in lung cancer, if you haven't already. And if you have, I'd probably want to go talk to another one.

Also, given that stage 4 is technically rarely curable, the use of the term palliative shouldn't be taken as meaning giving up. People who are treated and lived with stage 4 lung cancer for many years, are technically being treated palliatively, rather than curatively. But there are many out there living many years and with a great quality of life. I would want to know what this doctor means by 'palliative'.

I'm sorry you are going through this and I hope folks here are able to both help you and give you hope.

[CraiginPA]

kmelinda,

I'm sorry to hear about that complicated situation.

I'm not sure it matters to anything I could suggest, but I'm a little confused that you say the lung cancer is only in the pleura and nowhere else, but then you say the tumor is located in his left lung where the bronchial enters (left mainstream).

Re: pleural effusion, there is a procedure called TALC that sometimes can stop or reduce the building up fluid in the pleura in order to allow easier breathing.

Re: squamous cell lung cancer, there are a number of possible driving mutations that could be the one driving the cancerous behavior. One that might be useful, if it is the one, is an EGFR mutation. Is his cancer being tested for that?

Besides EGFR, there are other mutations that might possibly be useful in experimental trials, but I'm not sure if he'd meet the other eligibility requirements. (e.g., FGFR, PIK3CA, KRAS, PDGFR, DDR2, NRAS, though I would guess that DDR2 might be the most promising of those, followed by FGFR, and the others might not be very useful yet).

FYI - Oncologists who specialize exclusively in lung cancer will probably know lung cancer best, so you might want to at least get a 2nd opinion from one if your main oncologist doesn't specialize like that. It's impossible to keep fully up to date on every kind of cancer and see patients of every kind.

Best hopes,

Craig

[curlysue50]

I would agree with what the others have said here about getting a second opinion and being sure the oncologist is a lung cancer specialist. I do not have squamous cell cancer, but NSCLC adenocarcinoma, stage 4. I was told my care would be considered palliative rather than curative. I had infusion chemotherapy and am now on a genetically targeted oral therapy. My left lung had collapsed and I had metastases to many areas of my body. The drug has reduced or removed many of those tumors. My left lung is open and functioning again except for a small area of scar tissue and pleural effusion in lower lobe. My cancer is not gone, but I am living a very good quality of life. As others have said palliative care today often goes on for years. It means they can not cure you. It does not have to mean "end of life" care as it used to. I was diagnosed August 2011 with extensive spread stage 4. I am still here undergoing palliative care.

I am sorry for your reason to be here, but hope we can provide support for you. Cancer is hard, as you already know. You don't have to face it alone. Best wishes in getting some more definitive medical answers and a possible course of treatment.

Hugs

Susan

Sent from my SCH-I405 using Tapatalk 2

[chloesmom]

I don't have much to add in terms of advice. I think the others have said what I would have said. But I want to welcome you and hope you keep posting and advise us on Dean's progress.

Cindy

[Alan]

Seems to me that where that tumor is located, it should be treatable. Not treating it and allowing a partial lung collapse to go on would send up a big red flag at my house. A second opinion is definately in order. People with complex and multiple cases are treated all the time. Get another or another opinion.