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it's all so new

natmat
Posts: 18
Joined: Mar 2010

Hello. I am very new to this whole thing. I was diagnosed with stage 3a cancer on my right lung and lymph nodes only yesterday. The doctor told me I have had it for years, with absolutely no signs. Almost 4 years ago I quit smoking, changed my diet and exercise regularly. Coming down with pneumonia is the how they found it.
My doctor is pushing things along as fast as he can. They want a CAT scan and PET scan and insert a port. He hopes to start chemo within the next two weeks. He scared me by stating if I am still here in 2 years, we will be on the road to recovery. I am only 45. I don't want to die and I don't know what to do.
do I change my diet more? do I plan for the inevitable of dying? I am afraid of losing everything my husband (of 25 years) and I have worked so hard for. I am afraid of losing my job when all options run out. I worry for my children and husband.
there is so much going through my mind, I can't wrap my head around this. I have read many posts here and they did bring me some comfort. I want to fight and I want to beat it, but what do you need to do that?
I am glad I found this site and return frequently on a daily basis already. Please, tell me where you found your strength.

rick devin
Posts: 6
Joined: Sep 2009

Hi, I too quite smoking about four years ago (after a collapsed lung) I had no idea until I started coughing blood. A biopsy revealed the cancer and surgery was scheduled. Then they discovered cancer on some of my lymph nodes and I went the route of chemo and radiation for six weeks until the tumor shrunk to an operable size. I had the two lower lobes of my right lung removed in October and the lab reports said the cancer was all dead. The chemo wasn't bad for me. I opted not to have a port even though I had chemo five days a week as well as radiation. I think your doctor was lacking in his beside manor to tell you "if you are around in two years" I could use a few other words but won't. Gather your husband and children and friends and let them know. Support will be there I'm sure. I found extraordinary strength in talking about it to those willing to listen. I still live with the fear it will return, but won't allow myself to obsess about it. I also do a lot of meditating and yoga and find a lot of strength in those endeavors. Wishing you well.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

The first thing you should do is take a deep breath and relax. Getting a cancer diagnosis is the scariest thing that can happen to a person but it is not a death sentence. I was diagnosed in May '09 with NSCLC in my left lung and then was diagnosed with SCC of my larynx a couple of week later after the PET scan. I was told both were inoperable and incurable but treatable. None of us knows how much time we have left, even if we don't have cancer we still don't know. I am planning on having many more years to enjoy my family and friends and so far my doctors have not told me otherwise.

I'm not sure what your doctor was thinking when he said "if". Unfortunately not all doctors have good "bedside manners", maybe he is just the type who is blunt and upfront with all of your information. Personally, I prefer the blunt and upfront approach because then I know where I stand. If you are uncomfortable with him you may want to consider getting a second opinion. I was happy to read that your doctor is pushing to get everything started asap. Most people on this site have complained that the doctors are moving to slowly and want to get started with their treatments sooner. It sounds as though he has your treatment plan all mapped out and it is an aggressive one, believe me, aggressive is good when fighting cancer.

What you need to do now is keep up your exercise and healthy diet but you may want to try to gain a few pounds. Most of us have lost weight during treatment and the inevitable loss of taste (temporarily) during radiation. You didn't mention whether you are having surgery or radiation. You and your family are in for a fight - the fight for your life - and you need a game plan. Who will be your caregiver - you will need someone to help you while undergoing treatment as you will probably not have the strength to do much for yourself and will need someone to help you daily. I'm assuming because of your age that your children are probably teenagers, if they are able to accept your diagnosis then I suggest you keep them informed about what you will be going through and let them help you. My daughter, who is married with a family of her own, did not deal well with my diagnosis so I have only told her what I feel she can handle. All children react differently and you will know what is best for yours.

I understand your concern for your job but right now your first concern needs to be for yourself and your family. Depending on your treatment regime you may be able to work for a while, does your job offer long or short term disability??

There is so much more information that I and many others on this site have to offer but it will be easier for us once we have more info. What type of cancer - non small cell/small cell? - is it operable? - will you be receiving radiation? - what chemo drug will you be receiving and how often will you receive it. Mine was cisplatin and I received it for 2 days every 3 weeks.

I know it is a lot to comprehend right now so you really need to take a deep breath, have a pity party and then get ready to fight. Pity parties are okay as long as you know when to leave ;-) I still have them occasionally but I limit them to 15 minutes.

When you go to your doctors it is usually advisable to take someone with you and have them take notes as most of us couldn't tell you what our doctors said at each visit as it is a lot of info to absorb all at once. Also, make a list of any questions you may have for your doctor.

Most of us found our strength in ourselves, our families and friends and our religion. You will be amazed at how strong you really are when you have to be. You and your family will come out of this whole cancer ordeal much stronger and with a much better appreciation for life and for each other. Cancer IS NOT an automatic death sentence!!

If you can maintain a good attitude and a good sense of humor it will help you and your family through this.

Please post again to let us know how you and your family are doing and update us on any information you have on what your treatment will consist of. There are many people on here who have experienced the same or similar treatment that you will be undergoing and they will be able to tell you what to expect. We are all one big family here and we will do anything to help you, whether you need advice or encouragement, have questions or just need to vent - we are here.

Take care and stay strong,
Glenna

natmat
Posts: 18
Joined: Mar 2010

still learning how to post, didn't mean for an empty space.

natmat
Posts: 18
Joined: Mar 2010

Thank you for the words. I have found amazing support in friends I didn't even know I had. Many are stunned because of my healthy lifestyle.
I am not sure of specific medical terms, but the cancer is NSCLC. The doctor's looking at chemo and radiation in the form of a pill. He said there will be hair loss and nausea, but that is not a given. I am hoping because of my health otherwise, that I will have minor side effects, but am preparing for the above. I have no idea how long I will need these treatments, but I assume it will depend on how I react to the treatments. He never mentioned surgery but I intend to ask.
I was taken aback by the doctor's bedside manner, but I do prefer the direct approach. It's hard to swallow those terms, but it let's me know how hard I have to fight.
My children are 22 and 19. The oldest is pregnant and due next month. Her entire pregnancy has been difficult, so I have only told her what is necessary. The younger one is too immature to wrap her head around it, but at this point, I think that is best. I don't want either of them to stop their lives.
It is hard to exercise right now because the cancer is in my airway to the lung, causing me shortness of breath. Taking a shower wipes me out for 2 hours afterwards. I have an inhaler of albuterol, but not really convinced it helps. Tylenol helps for the pain right now, which I am grateful for. I am not a fan of meds so the longer I can put them off the better.
How long does a chemo session last? what is the difference between a radiation pill and actual radiation, in terms of treatment?
I'm glad I found this site and can talk to others in my situation. It gives me hope. Others say they will be here to listen, but I wonder for how long. Also, I would prefer to talk to someone who understands what is going on with me, not the generalization of being sick.
Nat

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

I also have NSCLC and have some shortness of breath also but still manage to do most activities, including taking long walks, without any problems.

I am not sure of the pill for radiation, I had the tradiational radiation for the cancer on my larynx but had Stereotactic Radiosurgery for the lung cancer. This type of radiation is more targeted and does not destroy the healthy tissue surrounding the tumor. The tumor in my lung is very near the pulmonary artery.

I had cisplatin for the chemo, which my oncologist said was the "big guns" of chemo drugs. How long the chemo session lasts will depend on what type of drug(s) you are receiving. I received mine through an IV and I was usually there for about 5 hours. I was told by all of my doctors and their nurses that I would lose my hair but I never did :-) and they were all shocked. I did have some nausea but they have pills that will help you. You need to drink plenty of water, at least 8 glasses per day to help keep your body hydrated and to help flush the chemo drugs out of your system, you should drink water everyday, not just on your chemo days.

I agree that it is easier to talk to people on this site as they understand what is happening to you and understand all the emotions you are feeling. I have friends and family who have been great throughout my treatment and recovery but they just don't understand the emotional and physical toll that cancer takes on a person. Unless someone has had cancer they can never fully understand.

I hope someone who has had the radiation pill treatment reads this post so they can answer your questions.

Please take care of yourself and post again when you have time. Remember - it is doable and you will survive!!

Stay strong,
Glenna

appleyellowgreen's picture
appleyellowgreen
Posts: 38
Joined: Sep 2009

Nat - scanned your posts. I am a caregiver.
My husband was diagnosed with nslclc in 2005. He had surgery first on the right side, then the left.
He was watched for a recurrence which happened in October of 2009.

He has since had surgery and is now undergoing chemo. The pill option you speak of is only one option and there is no reason, as far as I understand it right now, for anyone to experience nausea. There are so many medications to help prevent it. Steve has had 3 sessions of chemo and no nausea whatsoever. They give him meds for two days before the chemo and two days after. He also has something called ONDANSETRON to take as needed for nausea. See what your docs say.

Re: diet. It's not a wive's tale. The book called "Eat To Live" is about what to eat to live longer. There are specific foods to eat for cancer. And, the book is very strict. If you are not able to be a vegetarian (in the case of the book a Vegan), you may want to look into Macrobiotic cooking schools in your area.

I do know people who have extended their lives after they were given death sentences by changing their diets. You just have to want it badly enough.

Tomorrow I am getting on the phone with a macrobiotic chef who I want to come to my home and teach me what to do. We can eat fish on that diet. No red meat. Not sure about chicken, but I doubt it.

It's definitely worth looking into. A diet high in leafy greens, grains, beans and raw nuts is what is called for, primarily. Personally, I kinda like it.

I don't know where you are receiving therapy or where you live, but they may be able to help you out.

There are also several types of radiation. Tomographic radiation is done while you're in a CT machine and it is totally targeted.

There are lots of things to look into. Including the dr. you are choosing. I understand he feels a sense of urgency, but where do you live and what is the best facility in your area for treatment?

These all are serious questions that need to be looked at.

Good luck.
Apple Yellow Green

medi_2's picture
medi_2
Posts: 510
Joined: Aug 2009

Hi Nat, Sounds like we have a lot in common except I had sclc. It was found by accident. I showed no visible signs; in fact I had run 10 miles the previous weekend. My Doc went the aggresive route and I pretty much breezed through the Cisplatin. The Doc thought it was because I was so healthy going in (well except for that tumor thing ;))so maybe your good health will help you too.
Since your breathing is affecting your excercise I would recommend meditation. You also can 'excercise in your head'. Sounds crazy but if you concentrate and see yourself exercising, these sessions can really have a good effect on your overall outlook and health. You don't need anything fancy for meditation; just find a picture or photo to concentrate on until you are absolutely focused.
Good Luck to you!
Medi

rick devin
Posts: 6
Joined: Sep 2009

Nat,
I have found through rehab that pursed lip breathing helps somewhat to alleviate the shortness of breath. Breath in through your nose and blow out slowly through your mouth with your lips pursed (as if you were trying to whistle) I do this when I exercise or more exciting things like carrying laundry upstairs. I hope it will help you.

natmat
Posts: 18
Joined: Mar 2010

You all have been very helpful with these suggestions. I actually used the breathing technique last night when I almost completely lost my breath. I visited a health food store and got some items to take. I have some tea for aid in clearing the airways, some powder called Greens 8 in 1 that is mixed with water to help me get all the "greens" nutrition that I need and I am taking Graviola, anyone heard of that? The claim is that is helps shrink tumors in various cancers. At this point I will try anything someone tells me will work. I was told to completely cut pork out of my diet.
Today I get my port placement. Reading up on it helped me to know what was coming, but jumped my nerves a bit as well. I woke up thinking I don't want to lose my hair. I guess I will go through various feelings for a while.
Will post tonight on how the port placement went and thanks again to everyone.

Glenna M's picture
Glenna M
Posts: 1576
Joined: May 2009

Hope everything went well with your port placement and you are feeling fine.

Please be careful what OTC products you take, some can create problems for you while you are undergoing chemo treatment. I personally, and I'm sure others will agree, do not take anything unless I check with my oncologist first. I even asked about what vitamins I could take and was told I only needed the standard "one a day" type, not to bother with ones that contained antioxidants as they were all hype and not much help. I was told to check the brand that I bought to make sure it had the pharmaceutical seal on it as many "generic" vitamins didn't actually contain what they claimed they did. Some sports drinks can also have adverse affects while undergoing treatment so please get in the habit of checking with your doctor or nutritionist before taking something new. Just my opinion and "unsolicited advice" ;-)

Take care and stay strong,
Glenna

natmat
Posts: 18
Joined: Mar 2010

Thank you for the advice Glenna. I am just so beside myself still, I want to believe everything I am told. The port placement went very well, glad its over, now just the tenderness. Had CAT scan and PET scan today. Wow, what a job that was. No effort on my part, but takes forever! And two days of procedures that don't allow me to eat, I could eat everything in sight right now.
Right now I am experiencing something weird. I have a like a prism effect out of the corner of my eyes. It doesn't appear to be only one. It's not bothering me, other than not expecting it. I am hoping its just all the tests today and rest will help me.
I will inquire with my doctor on what I should take and thanks again for the advice.

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