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Old 01-26-2010, 09:02 AM   #1
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Don't know where to begin

Hello everyone. My father, age 71, recently had an x-ray (for chest pains) and the doctors discovered a large mass on his upper left lobe. He had a bronchoscopy, PET scan, pulmonary work up and an MRI. My father never smoked. either did my grandmother--but she died of lung cancer at age 55 in 1958. Other than that, my father has always been healthy--aside from anxiety issues for which he takes a sedative.

The bad news is that the mass is malignant. The good news is that it is localized, contained and nothing has spread to any other organs. Also, the doctors claim that because the tumor is on the inside of his upper left lobe--as opposed to the outside--it is as good a situation as it can be. He has not been officially staged but they are calling it 1b for now.

My parents are very old-school and don't tend to ask a lot of questions. I am going with them to meet with the thoracic surgeon next week. What should I be asking? I assume since we are moving from the pulmonologist to the surgeon, my father will be having surgery at some point soon--his lymph nodes were clear but a tad inflammed. Are chemo or radiation generally done (or should either be considered before or after surgery)? Should an oncologist be involved?

My cousin is a nurse at Miriam in Providence, RI and has been an angel about getting my father in to see the right people. The surgeon is supposedly very renowned--a Dr. Fontaine--who is a teaching doctor and a leader in a less non-invasive surgery for lung cancer. I've suggested that my dad get a second opinion (once we have a plan in place) in Boston since we are only 40 minutes away but he is a VERY nervous person and doesn't want to "waste any more time." He is also very comforted by the idea that my cousin is so actively involved in getting him in to the right people.

Can anyone offer me any guidance? I don't want to overstep my boundaries. My father has asked me for help but I am teetering on that crazy line between offering my advice and deferring to his feelings--he is afterall, the one with the cancer.

Thank you so much for any help you can provide. I just need some direction.

Beth

 
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Old 01-27-2010, 11:18 AM   #2
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Re: Don't know where to begin

Beth, I'm sorry to hear about your dad's cancer. It sounds like our experiences are very similar. My mom is 69 and her cancer was just discovered, last week, after she was admitted to the ER for chest/back pain. She, too, has a mass (about the size of a walnut) in her upper left lobe that requires surgical removal -- no chemo or radiation, because it hasn't metastized (per her PET scan result). I can't offer any advice, at this point, but will offer whatever support and/or information I can.

Since Jan. 4th she had the initial xray at the ER, which was followed up with a xray and CT scan ordered by her Pulmonary doc (she has emphysema and was a 2-to 3-pack a day smoker for over 30 years). After he read the results, he ordered a full-body PET scan, last week. She received the results of the PET scan, this Monday. Mom met with her surgeon, yesterday (24 hours later, so things are moving pretty fast). He's a cardiothoracic surgeon who has recommended removing "1/2 her left lung" (per my mom and dad). However, I've discovered from other postings that the left lung has 3 lobes and that it isn't possible to remove 1/2. Mom doesn't remember discussing anything about "lobes," so I can only assume that they are planning to remove two of her three lobes. Her surgery is scheduled Feb. 10th; however, they are running several pre-operative tests to check on her heart and lung functioning. At this point, I'm concerned that she may not be a good surgical candidate, but will cross that bridge if, and when, it becomes an issue.

You are fortunate that your parents are willing to have you involved in their appointments. I am an only child and tend to ask very specific questions to get to the facts. My mom, who is fragile emotionally and physically, has a difficult time dealing with any negative information. She was diagnosed with bipolar disorder and OCD about 15 years ago, so her psychological state further impacts her ability to manage emotionally stressful situations. Unfortunately, my father trys to manage my mother's emotions, by keeping things from upsetting her. In a situation such as this, it means that they may not ask too many questions, especially difficult ones, so she may not be fully aware of the impact of her diagnoses and/or her treatment choices -- which makes me very frustrated and I, too, find myself trying to balance between offering advice and being respectful of my parent's relationship and the way they choose to manage this situation.

My advice to you would be to follow your heart when it comes to offering advice. I think since you are already sensitive to overstepping boundaries that you probably won't. People who tend to overstep are typically oblivious to boundaries in the first place. Since your dad has asked for your help, he obviously loves and respects you. He already trusts that you will do what is appropriate. But, if you're concerned about offering advice, ask him first and see if he wants to hear it. I wouldn't press the issue, though, if he thinks differently. This way you're being loving and respectful at the same time.

I will be thinking of you and your family during this terrible journey. Please continue to keep us posted on how things are going. Take care.

 
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Old 01-28-2010, 08:20 AM   #3
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Re: Don't know where to begin

Thank you so much for your kind response!

Our situations sound very similar--except in reverse! I am an only child as well and even though I have a supportive husband and extended family, I'm feeling very alone and overwhelmed. Not a day goes by where somebody says to me "Get your father a second opinion" or "get him to Boston." I know they are trying to be helpful but it is making me feel worse.

My mother is like your father. She won't say anything to make my father more upset and she sometimes chooses to ignore vital information--she couldn't tell me (after all these appointments) how big the tumor was because she didn't think it was important. Sigh. I wonder if it is because she really doesn't want to know.

I will definitely keep you posted as to what they are doing. I was very interested to see that your mother is receiving no chemo or radiation because this is one of my concerns--I've heard very differing opinions on adjuvant chemotherapy after surgery--especially with Stage 1.

I will keep your mother in my thoughts and prayers. I hope that you receive good news about her surgical options. If you just want to vent or talk, feel free to post again. I had a wonderful childhood as an only child but I've always dreaded being an an only child as an adult. I know having siblings doesn't guarantee support but it's such a tricky situation when it comes to my parents and what I can offer.

 
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Old 01-29-2010, 02:51 PM   #4
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Re: Don't know where to begin

Betsypup said: " I was very interested to see that your mother is receiving no chemo or radiation because this is one of my concerns--I've heard very differing opinions on adjuvant chemotherapy after surgery--especially with Stage 1."

I had surgery to remove a lobe of my right lung which contained a large tumor, and I was declared cancer free and needing no further treatment. Then about 6 months later I developed severe pain in my lower back and an MRI showed that my lung cancer had spread to my spine and my liver. Obviously, at this point, I wish I had had treatment right after my surgery. But who knew? I had to trust the doctors.

Now I have had three rounds of chemotherapy and radiation to my spine. Nothing has worked and I have to take oral morphine and wear the Fentanyl patch for pain. Now they are seeking a clinical trial for me.

The treatment for cancer involves professional guesses. You need to have the truth, even though I really didn't want to give it to you. Balancing the truth and hope becomes a delicate dance. I wish you well.

Last edited by Shelleymky; 01-29-2010 at 02:53 PM. Reason: addition of who I am quoting

 
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Old 01-30-2010, 07:28 AM   #5
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Re: Don't know where to begin

Thanks for your reply. I'm appreciative because at least for me, reality and knowledge are so important.

I will keep you in my thoughts and prayers.

 
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Old 02-02-2010, 12:08 AM   #6
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Re: Don't know where to begin

Betsy, I read your entry a few days ago and wondered whether to even reply, but as the dialog has progressed, I feel that I may offer an understanding. I was in your mother's shoes with my own husband's cancer discovery and treatment. As a wife of a lung cancer patient, I fully understand your mother's position. I know that even though I had some medical background, that the whole experience of discovery, staging, treatments, is so overwhelming. I knew the pros and cons of each treatment, I knew the prognosis, I knew the lasting effects of chemo and radiation and the reactions one has to those treatments. Loving my husband as I did, I felt I had no right to persuade him in respect to his choice of treatment. I felt compelled to let him make up his mind as it was his body, his life, and his right to seek the alternative that he was willing to accept. I know I saw his struggle to survive and it was brutal to say the least. I supported his decisions and I fought for him to make sure that the treatment he chose was as easy on him as I could possibly make it. I know that we all want to succeed in conquering this horrible illness and I pray that your father is one of the lucky ones. But I do understand the position your mother is in and I know it would be a hard decision to make to urge a treatment that may cause so much discomfort. I applaud you for being an advocate for your father. I know that we all need someone in our corner. I will pray for your father's successful treatment, whatever that may be.

I know that as time progressed in my husband's treatment, I felt sparing my own children from worry that they had no control over some instances in his illness and care was the kindest thing I could do for my children. I wanted them to visit with no worries of the doctor's appointments or details of his care or prognosis. I wanted them to visit and share time with their father without the dread of what may happen tomorrow. I only hope you find peace and contentment in your time with your father at this time.

Last edited by goldyfm; 02-02-2010 at 12:15 AM.

 
Old 02-02-2010, 08:49 AM   #7
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Betsypup HB User
Re: Don't know where to begin

Thank you so much for your kind words. I appreciate the input. It is a really overwhelming position to be in--especially since I am a very logic-based person. We have an appointment to speak with the surgeon today. I'm going for support and also, to be a "second ear." After that, I plan to defer to my Dad.

 
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