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[Jaybee]

I just had an upper left lung lobectomy on June 13th.  Every test, scan and biopsy came out negative for cancer but my dr felt it probably was cancer and stage 1.  When they did surgery it turned out to be stage 3 with lymph nodes affected and smaller nodule in right lung.  So now I set for radiation and chemo (taxol/Carboplatin) for 6 weeks.  Of course I have discussed with my children and both have different opinions.  I am a 67 yr old widow who lives alone.  I am very concerned about how I can do this aggressive treatment on my own.  Stage 3B very scary and is it really worth it.  My other issue I was healthy and working full time until drs decided I was sick.  Now I fear I will never return to work and if that happens I can not even support myself.  I would really like some opinions from someone with experience.   I am very scared.

Thanks in advance, Jaybee

[LexieCat]

Hi, Jaybee, and welcome!  Sounds like it was a good thing your doctor went on experience and instinct rather than slavishly going with what the tests showed--medicine is an art as much as it is a science.  Has the nodule on your other lung been diagnosed as cancer?  If not, it isn't necessarily anything to worry about.  Most nodules are not cancer--I have several that my doctors are not particularly worried about that have been there from the beginning.  Only one of them had a suspicious appearance and grew--that was the only one that was cancerous.

I was fortunate enough to be Stage 1, so I had no treatment other than surgery.  But there are plenty of folks here who have done chemo and radiation--many of them are out of commission only for a short time while undergoing therapy.  We have people here who were Stage 4 still kicking around more than 10 years later--I think every one of them feels their treatment has been worth it.  

People here who have had chemo or other drug treatments and radiation have different experiences.  Not everyone has dramatic or debilitating side effects--response/reactions are very individual.  If you need help with home care, there should be someone at the hospital (patient navigator or social worker) who can hook you up with any services you need. There also may be in-person support groups, in addition to the great support you will find here on the forums.  

I know it feels very scary and overwhelming right now.  Try to take things one step at a time.  Let your medical professionals know about any help you think you might need.  I take it your family is not nearby?  Do you have friends who might be able to give you a hand for those days when you might be feeling extra tired or sick?

[BridgetO]

Hi Jaybee and welcome.

I hear and understand your fear and concern. I had a lower right lobectomy in November 2016 and my lung cancer was Stage 1a, so I didn't need further treatment. I had tow previous cancers, Stage 1 Breast cancer in 2008 and Stage 3 cervical/endometrial in 2011. For the Stage 3, I had 6 weeks of concurrent chemo (Cisplatin) and radiation and then 3 rounds of Carboplatin and Taxoterre. My spouse wet with me to my first concurrent chemo/rad and my firs round of Carbo/Taxol. After that , I drove myself to all of my chemo and radiaiton appointments alone. This treatment was definitely not fun, but it was manageable. I had digestive system issues because my gut was being radiated.  I didn't have much fatigue -- a problem that a lot of people have from raidation. 

Fortunately, I was retired from full time work (I was working part time off and on)  so I didn't need to worry about working during my treatment. I did have some late occuring side effects from my radical gynecologic surgery, so I was our of commission for a while, but I did go back to part time work eventually. 

You'll probably hear from others  on this forum who worked during their chemo/radiation and/or have returned to full time work afterwards. Treatment affects each of us differently. The fact that you were healthy before being diagnosed  I suspect you will deal with treatment better than you think. You won't know for sure unless you try it. LexieCat's suggestions about finding support locally are excellent. 

I've been through a lot of treament with 3 cancers and it's been worth it for me. My life today is good and I hope to live a good meny more years. 

Hang in there Jaybee. Let us know what questions you have and how we can support you.

Bridget O

[suecris]

As a 60 year old widow who also lives alone, I understand your fear. I haven't been diagnosed yet - I am awaiting PET scan in 3 weeks. I have a 4x1 cm mass in my left lung, and had pulmonary embolisms. May I ask what brought you to the doctor when they found your cancer?

All I can say is try to take things one step at a time and don't let your mind go to the darkest places. Just carry on as best you can, putting one foot in front of the other. I'm sending as much positive energy your way as I can.

[Laurel]

I am so sorry you are going through this cancer journey. I was told I had lung cancer November 2016. That same week my husband had a massive heart attack. Friends took me to testing and offerred so much support.  Initially, I was told Stage IA. After surgery in February with upper right lobe removed and 13 lymph nodes (4 cancerous) I was told Stage IIIB. Even though surgeon and oncologist at M D Anderson believe I am cancer free, I am doing chemo then radiation with my local oncologist. Lung cancer can be persistent. I strongly believe that reaching out for support from others can help. Friends, your church, Cancer groups. I go to youtube.com for short videos on anxiety related meditation, funny videos, dance/music videos. Carve out time away from a focus on cancer. 

[Susan Cornett]

Hi, Jaybee.  Sorry you have to deal with this crummy disease but so glad you found us.  I was initially diagnosed as stage IV in 2016 and had a recurrence in 2017.  In 2016, I had a lobectomy followed up by chemo.  I went back to work 4 weeks after surgery, and worked during chemo.  For my recurrence, I had 6 weeks of chemo (carboplatin/taxol) and radiation.  My employer is very flexible so I was able to work from home whenever necessary.  In fact, I worked from home during all of my treatment in 2017.  Not working is not an option for me for a number of reasons, but primarily because I need the distraction.  

We've seen so many incredible advances over the last few years that many of us are living longer than ever.  We have many long-term survivors here.  Do you know if your doctor tested you for any biomarkers/genetic mutations?  For those with certain markers , immunotherapy is an option. 

Treatment can be challenging but we all react differently.  The most significant radiation side effect for me was fatigue.  By week 3, I was taking a nap at lunch every day.  But, full disclosure, I had my thyroid removed in 2016 and chemo/radiation threw my numbers out of whack so that contributed to my fatigue.  You might find this link useful; it gives you an idea of what side effects to expect and how to deal with them.  Just keep in mind that your medical team should be able to help you with any side effects. I had meds for nausea and pain from the chemo, and took OTC meds for heartburn related to my radiation.  

Please let us know how we can help you.  

[Tom Galli]

Jaycee,

Welcome aboard. 

You’ve already received some great information about this forum and lung cancer. 

I’ll focus on fear and how cancer affected my ability to work. First, some prospective. I was diagnosed stage IIIB nearly 15 years ago. If I can live, so can you!

Lung Cancer is frightening. It was my first serious illness. It was not my first brush with death, but it was the first I had absolutely no influence in outcomes. There is no magic potion that reduces fear. In time, you will learn to cope but it is always just under the surface in my life and rises to prominence a couple of weeks before my bi-annual oncology consult. 

I didn’t work during my first line treatment (6 weeks of radiation and weekly chemo). Then I had a year’s worth of surgical mayhem that kept me mostly in the hospital. I did work during third line and fourth line chemo and fifth line radiation. I did so for the same reason Susan did: I needed the distraction. 

Going it alone will be tough. Others here have done it and we are here for you. I hope you have family or friends that can help. 

Questions?  We’ll field those. 

Stay the course. 

Tom

[Jaybee]

Thanks to all of you for your replies.  I am going thru with treatment.  I believe attitude is so very important and I can tell you I am far from a good one.  I have been so discouraged by all that has happened.  Going through this living alone scares the crap out of me.    I have never been sick and this is now taking a toll of my whole life.  Thats is the hard part.......being sick.  Hope I don;t sound like a whiner but maybe I am.

Jaybee

 

[BridgetO]

Hi Jaybee,

You're entitled to whine. Cancer is a drag and we all whine (or worse) at times. I'm glad to hear you've made a decision for treatment. Hang in there and just put one foot in front of the other.  Just take one day at time. Let us know how we can support you.

Bridget O

[Tom Galli]

Jaybee,

You have a really, really good excuse for whining.  Hang in there.  You are not alone.

Stay the course.

Tom

[LexieCat]

I'm glad to hear you've decided to forge ahead.  Please don't get ahead of yourself, though--as I said, every person/case is different.  You should kind of prepare yourself to be feeling a bit crummy during parts of your treatment, but there's no reason to assume it's going to be horrible and unrelenting.  

What helped me when I was just starting out and not knowing what the results of my surgery would be was to control what I could.  For instance, I gave my house a good cleaning before surgery because I knew I'd be feeling not so great for a couple of weeks at least.  I touched up my hair color, knowing it might hurt to hold my arms up until I'd healed a bit.  That sort of thing.  Planning ahead can help reduce the worry and stress--it did for me, anyway.

[Jaybee]

Entering week 3 of my radiation/chemo treatments.  It has been difficult, no surprise there.  So far I have been able to drive myself to treatment every day.  Doing this alone is horrid, but I knew it could be.  The oncologist said today I am a "high risk"  patient.  There was so much discussion with him that I did not get to ask why he said that.  I will when I see him in a couple of weeks and will definitely bring it up.  But meanwhile, does anyone know why I would be considered High risk?   I have never been sick in my life (67) until they told me I was sick.    So I am now  concerned what that means.  Thanks to you all.  

[Robert Macaulay]

Jaybee

Being a high risk could be your occupation or family history of cancer or you were a smoker.?

Bob

[LexieCat]

"High risk" could mean high risk for anything--from getting cancer to susceptibility to side effects, to likelihood of recurrence, to, well, anything.  Only your doctor can explain what he meant by that.  It isn't a "term of art" that means the same thing whenever it's used by a doctor.  You'll just have to ask him what he meant by that and, most important, what it means for YOU.  Find out whether there is anything you can or should do to mitigate whatever the risk may be.

Sounds like you're managing pretty well so far.  From what I hear, radiation's side effects can become more intense toward the end of the treatments.  Hopefully it will continue to be something you can manage on your own, but it might be a good idea to try to line up some help in case you need it for the last part.

[LaurenH]

Hi, Jaybee,

There are a number of factors which can increase a person's risk of lung cancer. To name a few:

1. Age 65 and older
2. Air pollution
3. Asbestos and other carcinogens
4. Family or personal history of cancer
5. Radon
6. Tobacco smoke

You can find more information and additional risk factors here: https://lungevity.org/for-patients-caregivers/lung-cancer-101/reducing-your-risk

Please continue to post updates and ask questions. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[Jaybee]

So just an update on my condition.  I did complete 41 rounds of radiation and 7 chemos in September.  At that point my scans were clear on left side. however, an area on right side was deemed too close to my spinal cord.   I had 4 immunotherapy treatments ,  planning every 2 weeks for next year.

Went back to work in October, which was wonderful since money is an issue for me.  Went to ER  early November with some issues.  So now it has mestastized to my brain in 3 areas.  I  have made choice for no more treatment.  This is just viscious!   Not sure what kind of response would make me feel better but wanted to share.  Have not found anyone else here who has talked about spread to brain.

 

Thanks, Jaybee

[BridgetO]

I'm sorry to hear about your metastases. What a hard decision you've been faced with. Thank you for sharing.  I can'r remember whether anyone has shared here about spread to the brain. I hope someone who has experienced this will chime in.  I wish peace and comfort for you.

[Laurel]

Prayers and soft hugs for you. I have recently finished a year of surgery, chemo and radiation with two bouts of pneumonia and side effects....but nothing close to what you have gone through. My next PET scan is in January. I don't know what I'll decide if it comes back....but we all have choices. I honor your choice but I'm saddened for the need to make a choice. Bless you.

[Steff]

Jaybee,

Sometimes the only reaction I have to news like this is: "Well crap".  I've had a few of those reactions during my mom's lung cancer diagnoses and treatments.  You are so brave for enduring lung cancer treatment and making the decision you have.  I fear for the day when my mom says "I've been through enough", but believe I will accept her choice.  My uncle and my mom's best friend both had brain metastases from lung cancer.  I don't know how common it is.  Both received radiation.  Both lived much longer than expected.  Both eventually chose to stop treatment.  Both chose to live their lives to the fullest with the time they had left - spending time with their children and grandchildren. Their choice to end treatment did not mean they were choosing to give up on life.  I admire your courage to face your future head on and live.  I hope you reach out to us when you need to as we are always here.

Take Care,

Steff

[Tom Galli]

Jaybee,

I certainly can’t construct a response that makes you feel better. Lung cancer sucks! Recurrence sucks squared and brain mets are over the top bad news!

Still foregoing treatment is not foregoing life.  I know you’ll make the most of every minute. 

Stay the course. 

Tom

[Susan Cornett]

Jaybee,

I'm sorry to hear that it has spread to your brain.  You've made a very difficult decision, and those of us who have endured treatment certainly understand the decision.  It just gets to be too much. I pray that you find peace and comfort in your decision.

With respect to the brain mets, I've been told that radiation can be effective but I have no idea what side effects or lasting impact there would be.  

[Jaybee]

So thank you all for the encouragement.  The choice was pretty easy for me considering the ones I had!  Steff, can you tell me how long the people you knew survived with their brain mets?  I understand that is a difficult question!

 

Tks, Jamie

[Rower Michelle]

Hi Jamie, 

I really admire how you managed this process and will continue to pray for you.  I wanted to let you know I've met a number of survivors recently who thought brain mets was the end of the road and years later, they are still here living productive lives.  Some people have had surgery/radiation and did pretty well.   You are so brave. 

Michelle 

[Steff]

3 hours ago, Jaybee said:

So thank you all for the encouragement.  The choice was pretty easy for me considering the ones I had!  Steff, can you tell me how long the people you knew survived with their brain mets?  I understand that is a difficult question!

 

Tks, Jamie

Jamie,

Both my uncle and mom's friend had radiation to their brain mets and lived for at least 1 year after they were found.  For my mom's friend, I seem to think it was longer than that, but I can't remember for positive.  I honestly can't remember how long they lived after radiation was stopped.  Both continued to smoke and my uncle was a maintenance alcoholic, so neither were the picture of health to begin with.  My uncle was in his mid 60's and my mom's friend was in her 70's.  Hope this helps. 

Take Care,

Steff