Mom Diagnosed with Squamous Cell Carcinoma...and it really broke me down

Hi Everyone,

My Mom was just diagnosed with Squamous Cell Carcinoma in her Lungs earlier this month. She has had a cough for a couple months. Her PCP sent her for an Xray and told her , that nothing showed. He suggested that she take cough medicine and wait for this to past. My Mom eventually changed her primary and the new PCP sent her to a Pulmonary Doctor. He noticed something on her Lung and did a biopsy and found cancerous cells. Couple days later, PET scan showed that it has spread to her Chest area and Lymph Nodes. For the first week, I kept this to myself and didn't tell my Mom or sisters (three older sisters) that it had spread. I am somewhat the point person here, since I am currently changing careers and enrolled a Nursing RN program. I had gone back and forth on how I should present this to my Mom and rest of the family.....and the days I held this to myself were the worst days of my life. I was not sure how my Mom would take the news or even if I should tell her or just hold it from her and let her go to her treatments without knowing the extent of her cancer. Not saying this was right...but these were the thoughts I had with trying to protect her. I thought I was a lot stronger than I was, but this has really broke me down....but I am better now and ready to help my Mom.

CT scan was just done three days ago and I am going to pick up the report and CD tomorrow. First Oncologist we spoke with said he wanted to treat her with Chemo. He specialized in Hematology and Oncology. He said he would do 4 treatments, and may extend this to 6 of Gemcitabine (Day 1 and 8) and Carbopatin(Day 1)….rest 1wk…then start again.

I was not comfortable with his Theurapeutic communication. Please understand I am realistic about what is going on here, but I was just hoping for a more therapeutic way of presenting this to me and my Mom. He explained that the Cancer cells did not spread to her organs (Metasis), which he said was good. He then stated that "Unfortunately" there is cancer activity in her Chest and I believe it was the Lymph Nodes in the Subclavicular area. The word "Unfortunately" threw me off.

We asked about her eating certain foods and he stated that my mom could eat whatever she wants. This seems to contradict everything that I have read.

The Dr kept asking over and over if my Mom was coughing up blood and we stated over and over again….that she was not. She has a persistent cough, but nothing is coming up. We now have an appt set for Tuesday, June 4th with a Dr Kris at Sloan Kettering in NY.

I am 40yrs old with three older sisters and we would appreciate any suggestions, comments, thoughts and prayers you can offer that will help us along.

And oh……just one question…..is there anything I can do for my Mom’s cough ? The Dr told us to take Robitussion, but this does not help. He added that the Chemo may help here.
Thanks in advance and if any of this is not clear or if you have any questions for me…please let me know.

Thank you !

Eddie

By cjtexas
Posted May 30, 2009 at 8:45 am
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Eddie take care before you wear yourself out, don't keep all of this to yourself, when dealing with Cancer we need all the help our friends and family can give us and the care giver. I have the same cancer as your Mom Dx 1/08, I had cisplatin and etoposide chemo as well as 6 weeks of radiation at the same time, wore me down but I made it through, and am ned last scan and feel good. So believe it can happen, no the cancer is not cured, but I have time to keep going till they do find a cure. You are strong but also need the help of your family as you go through this, or you will crash and burn and be no help at all. Glad you found this site we'll pray for a good out come.

By CrazyEddie
Posted May 30, 2009 at 9:05 am
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A HUGE Thank You.....cjTexas.

I thought I was stronger than this.

I have the best and most supportive wife in the World that is playing a huge part in keeping me calm.. I am now staying at my parents home to help out a little more. But staying here is challenging because I hear my Mom's constant cough. The Dr said to give her Robitussin but this doesn't help. She seems to be more fatigue and a little more passive and I am not sure if this is because of the Cancer or if she is mentally drained.

This is tough stuff here....and I wish my other world (work, school, husband and daddy duties) would stop or slow for just a little bit so I can help my Mom more.

By luckeyone2
Posted May 30, 2009 at 10:29 am
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Eddie
Oh my god, I am going thru the same with my mom. She is 82 and was never sick a day that I can remember. One day she told me she just did not feel right (she never ever complains so I knew something was wrong). I took her blood pressure and it was high so I suggested it was time she seen a dr. since she didnt even have one. We went to my dr and he did a complete physical and said she was in great shape for her age except for the high blood pressure but when he took a chest xray he seen a spot and sent her for a ct scan which showed a tumor in her right upper lung. I like you didnt tell her that it was cancer and kept it to myself for some time not knowing how to tell her. But when she had the PET scan the dr encouraged me to tell her and that she had a right to know. Well she knows now and I no it was the right thing to do but now all she does is worry worry worry and it is taking a toll on her. My heart breaks for her. She had a biopy done at UofMichigan hospital last week and it has also spread to her chest area (sternum) diagnosed as non small cell squamous cell Stage 3. We have an appt this Friday with an oncologist to now discuss the plan. She is not a candidate for surgery and the Radio Frequency Ablation that they were going to do before it spread outside the lung is out also. I dont think she knows the extend of all this yet because they call me with the results and not her. As far as a cough she does not have one. So I cant help you there but I do know exactly what you are going thru. I keep extremely busy to block this out, but I think about it morning noon and even wake up at night thinking about it. So you and your mom and all the other cancer patients and care givers are in my prayers. Keep in touch with me even if you just want to talk. Take care and god bless. Nancy

By glendakay
Posted May 30, 2009 at 11:56 am
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Eddie: I also have small cell squamous cell carcinoma of my right upper lung and into one lymph node along broncial tube. I was lucky enough to have a physician's assistant who got a chest xray and as a retired RN I knew I had cancer by looking at the xRay. I had CT Scans then a needle biopsywhich gave me the dx. I had surgery on April 30th at the Univ.of Washington by Dr.Mulligan who does the VAT surgery, Video assisted surgery.
My oncologist said I needed chemo and I've decided to have it, it will begin on June 10th, and will be Gemzar(or Cytotoxic) and Cislatin(Platinol).
Don't try to keep the whole world on your shoulder's Eddie, I was an RN caring for oncology patients for over 12 years and I learned that most patients, even when the diagnosis was kept from them, theyknew; and most of them wanted to talk about it but didn't want to 'hurt' the one's they love so they pretended they didn't know.

It was a gift from God when the patient and family members all discussed the disease process openly and lovingly. That's why I loved caring for these people; that gift was more that I could ever give to them.

Now, I'm facing lung cancer, I hope and pray I can be as brave and open as these wonderful people.
Glendakay

By HighlandGuy
Posted May 30, 2009 at 2:54 pm
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Eddie and Others,

Please do not hold back information. As a patient, the worse thing that anyone could be guilty of with me, was not being totally truthful with me. I could deal with anything but being lied to.

Small cell lung cancer *SCLC is totally different from squamos cell which is classified as a NSCLC, treated entirely differently.

I have found in many decades of experience that if I feel uncomfortable with a doctor, my intuition is probably correct and I need to go to someone else.

Lung Cancer is unlike any other disease. It is incredibly complex *17 major different types). Few doctors have been trained to treat it, even fewer who are current with the latest research (changing by the week). It is also unforgiving (timely), and all to often lethal. We can;t afford to make mistakes. Let me know if I may assist you in finding qualified teams of specialists trained and experienced to treat this disease.

You are intelligent and I have faith that you will do what is right for your mother.

HighlandGuy

By HighlandGuy
Posted May 30, 2009 at 3:06 pm
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Eddie,

just had your post read again and you are abolutely right in going to Memorial Sloan Kettering. hey are considered to be perhaps one of the two best in the country. Keep up the good work and keep us infomred.

HighlandGuy

By CrazyEddie
Posted May 30, 2009 at 3:10 pm
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Wow !!!!!!!

You good people have no idea how much I am appreciating your replies / comments. I made a post on another board...and even though it has been 1 day...i thought I would get at least one hit. Just wanted someone to vent, cry or whatever to. I made a post here...and received so many well wishes and boy are you ALL so appreciated right now.

Being the youngest and only male with three older sisters...I am trying to be the rock....but its not easy...and I now realize that I am probably the most emotional one in the family.

Thank You, Thank You, Thank You....a million times over....you are so appreciated.

By CrazyEddie
Posted June 1, 2009 at 9:49 am
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Can I ask how many opinions or doc visits did you good people do ?

My sister has scheduled a third appt with a Dr Harry Harper at Hackensack University Medical Center. According to its webiste...they are ranked the 6th best in this area. However, I cannot find any other reviews of comments.

My concern is that I don't want to keep taking my Mom to doctor after doctor....but I do want my sister to be comfortable with all that is going on too...

its just that Sloan Kettering is ranked tops in the country.......not sure why we have to keep going to other appts. Moreove, MSK is a comprehensive cancer center ....I don't know.

Any opinions ?

By CrazyEddie
Posted June 1, 2009 at 9:51 am
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Not sure if my post was clear.....i am talking about how many times did you visit with the different doctors until you decided on one.

By CrazyEddie
Posted June 4, 2009 at 9:33 pm
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Went to see the last Oncologis today = MSK.

Here is what we have:

Treatment #1: Hackensack University Medical Center

Taxol and Cisplatin every 3wks for 4 sessions and see if treatment is effective.

Treatment #2: Memorial Sloan Kettering

Vinorelbine and Gemcitabine every 2wks again for 4 sessions.

Any suggestions / comments please share.

By CareyG
Posted June 5, 2009 at 4:21 am
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Hi Eddie. I would suggest making a new post regarding the questions you have on the two different treatments. I'm sure there are a lot of people here willing to give their thoughts and advice, but they may not see your question buried in this post.

I am so sorry your mom is going through this and my thoughts are with you and your family. My dad was diagnosed just Wednesday with the same (squamous cell, stage IV), mets to liver (so far). We're waiting for more scans next week to see if brain, bone and/or any other structures are involved.

Keep strong. We're all in this together, and this is a great group of folks.

By peyz33
Posted June 5, 2009 at 5:20 pm
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Eddie - I am sorry I was not here to read this first post - you should know that if you are not "comfortable" with the dr. find one that you are comfortable with - end of story. I was lucky and found a great team first time out at NYU Cancer Center - they work as a team and make decisions based on their individual expertise. You are SO much stronger than you think 0 these dx's have a way of showing how much strength (and will to live) we really have. U+I can and will happily refer you and mom to my team at NYU - just say the word!
Karen

By ttbmaat
Posted June 5, 2009 at 6:31 pm
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Hi Eddie,
I am so sorry to hear about your situation. I'm sorry I don't have alot of advice, but I will keep you and your family in my prayers. I was really touched by your story. My dad was dx stage IV NSCLC (adenocarcinoma) in July of '06. He was on the cisplatine & vinorelbine tx. He did remarkable. I know all situations are different; however, he has done well. I can truly say I understand what you are going through, as I just graduated nursing school (RN) myself. It is so hard to be "the child" and not the nurse with the info we have!!! It has been a long, hard road, but he is still here! Hang in there! I am married to a police officer, have 5 young children and just graduated with high honors from nursing school. Yet, the hardest thing I've ever done is watch the strongest man I've ever known fight this nasty beast. It is so difficult to feel so helpless! Good luck & my prayers to you.

Tracey

By Chi-Dreamer
Posted June 6, 2009 at 11:58 am
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Eddie,

There are hundreds of different "cocktail" combinations out there to treat lung cancer. Since there isn't any one drug they can definitely go to to cure the beast each Dr seems to have their preference and of course the type of cancer weighs in too.
I found I was given the first line of treatment which we can only get 4 to 6 treatments and then they will try other drugs for as long as they work. Once a drug no longer has any effect on the beast you are switched to another drug. Anyway that's how my treatment has been. All in all getting chemo sucks but I admit it wasn't as bad as I feared it would be. I still maintain a pretty normal life and am able to pretty much do whatever I have always done.
Don't try to burden all this on yourself , I am sure your sisters and your Mom may be stronger than you think, and together with love and support you will make a great team.
Sending hugz and prayers.

Linda

By CrazyEddie
Posted August 17, 2009 at 10:10 am
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My Mom passed on July 29th. Two days after her 73rd B-day. Never thought I would be here posting this, but things did not work out as I would have liked.

They asked if I wanted an autopsy, but I declined. If I had to call it....(and please note I am no doctor), the Chemo seemed to really have taken its toll on her. The coughing almost stopped completely, but by the time she was over one treatment, it was time for another.

Hoping someone can learn from my experience, so I will still be around. I have been to the cemetary everyday since burying her on Aug 4th, so these are very challenging times for me right now. My Mom asked that I help her to feel better, so initially I thought I let her down, but I am better today than I was say a week ago. Still going thru some tough times, but I am trying to puch thru it.

Love you Mom and I am so sorry !

Eddie

By Marlar
Posted August 17, 2009 at 11:55 am
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Eddie,

I am so sorry for your loss. You did everything you could for your mom and she knew it and she loved you for it. Remember, none of us leave this earth one second before our time and none stay one second longer. Your mom is watching you with love from above.

By nancydoodle
Posted August 18, 2009 at 1:17 am
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dear eddie-you were a great son and i am sure your mother loved you. it is always sad when death takes our parents too soon for us. be strong. God bless you and keep you in his arms. nancy

By robjo122
Posted August 18, 2009 at 1:14 pm
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Eddie, I too was diagnosed with stage IIIB, non-small cell, squamous cell. I think you mom should be told & she should be involved in her treatment. I had radiation for 39 days + chemo 1 day a week along with radiation. It shrunk tumor but not all the way. Off 3 wks put back on carbo/toxol every third week. It did not do a thing. They said it shrunk the 1st time because of radiation. I went for a 2nd opinion at Sloan in NY. I go to Dr. Pietanza. She now has me on Gizmar (spelling not sure of!!) I am staying with Sloan, even though it can be rough getting there at times. Good luck & just be there for Mom, let her know she can talk to you etc.

Welcome to Inspire!

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