Jump to content

Recommended Posts

Hi,

 

I had a lobectomy a year ago in Oct. so about a year and a half ago, for stage 3 lung cancer. I just had a bronchoscopy yesterday to confirm that the cancer has returned (or was never completely wiped out since it seams to be in the same spot) They were watching a swollen lymph node and taking ct scans every few months it didn't go down so we did a pet scan which showed a "very" hot spot in the media stinum and another more distal on the bronchial tube.

 

I am always trying to get a read on my Doctors and when I was first diagnosed and treated they were very hopeful and said they were "aiming for a cure" at one point when we first noticed this lymph node my Oncologist had said "If it does come back it will be considered stage 4 incurable cancer" Which naturally really upset me. So now that we have confirmed that that is in fact the case I asked her does this mean it has metasticised and spread everywhere and she said absolutely not in fact the pet scan did not show it anywhere else. This is confusing point number one.

 

During the meeting with my surgeon he said the treatment would most likely be chemo and radiation (I did not have radiation the first time around so a little nervous about that) He said after that if there was anything left he would consider doing surgery since I am so young (50 years old) but the body language of himself and my oncologist was that of someone giving me a death sentence... ie; hand on shoulder downward gaze... This is confusing point number two. Once they do this 2nd round of chemo and radiation won't I once again be considered cured? It seams they know something I do not. If I am only going to live a few more years then I would want to know this as right now I am in school for a career that, while not my life's passion, will offer me stability in the future. On top of this I work so I am working really hard towards a future I may not have. I think if I knew I were not going to live well into old age I would start more enjoying the journey and switch my studies over to what I am pasionare about. I know most people say I should do that regardless but the reality is that I need to make a living and at my age it may not be economically feasible to follow my dream although since this latest news I am seriously considering it.

Link to comment
Share on other sites

Hello and welcome.  Glad you found us.  I bet it was upsetting to be told that they found more cancer.

Glad to hear you have a plan in place. I had chemo and radiation before and chemo after surgery.

I was 50 when I was diagnosed.  When they did the surgery they found the tumor was dead.

Because I was Stage 3B they did the chemo after surgery anyhow. That was back in 97' to 98'.

I am still here. 

Do you have someone helping you at home?  Or going with you to the clinic ?

I don't know your circumstances well enough to tell you what path to follow on your career.

 

Keep us posted ,

 

Donna G

Link to comment
Share on other sites

I have no one hear at home. In fact I had a horrible night last night a day after my bronchoscopy. I had fever and pain all over. In general felt really awful. The day of the bronchoscopy (Friday) I had a splitting headache all day until 10 pm. Last time I had one done there was nothing. No ill side effects at all. the fever was a little scary because I could not tell for sure how high it was. The thermometer I have does not work very well and last time it read 101 I went to the dr. and the fever was actually 103.5 so last night it read 101.3 made me nervouse but I couldn't call anyone at 2am to bring me a working thermometer. I woke up soaking wet around my neck and chest and feeling much better so I guess I made it through that - whatever that was. Today I'll get a new thermometer.

 

I do have my brother and sister and friends to help me but you know how we are.... I don't like to call anyone unless absolutely necessary. My sister brought me down to Sloan for the bronchoscopy. For procedures there's no getting around it. I have to ask for a ride.

Link to comment
Share on other sites

I am glad you have a brother and sister , and friends.  You certainly can not drive after having a procedure where you are sedated!

I hope that fever is gone!   Otherwise you'll need to call the doctor. 

WE usually want to be independent and not have to ask for help but under these circumstances sometimes it is really necessary.

 

Please update us on how your temp is and how you are feeling.

 

Donna G

Link to comment
Share on other sites

Hi Donna,

 

This morning when I felt so much better (although still not great) I went out and got a good working thermometer and my temp was 101. So it had to be higher than that last night when I felt so aweful. Today it is holding steady arounf 99.8. That is of course with about 400 mg of ibuprofen every 4 hours or so.

 

Also not feeling great. Spent al day on the couch. I am hoping to feel better by math class tomorrow morning :)

Link to comment
Share on other sites

I spoke to the attending Physician. he said people get fevers after Bronchoscopy because small parts of the lung collapse and that I should practice taking deep breaths. If the fever remains above 101 for an extended period of time then I should come in to be checked out. So I guess if it peaks tonight again and does not drop below 101 by morning then I would go in... and miss math class.

Link to comment
Share on other sites

So sorry to hear you still are running a fever.  Yes,  deep breathing exercises could help for sure

Taking the Ibuprofen could be masking a fever too.  Sure do hope you get a good nights sleep and feel better in the morning.

 

Waiting to hear from you on how it is going.

 

Donna G

Link to comment
Share on other sites

Hi Donna, It's 8:30 pm here and my temp is 101.3. I will make a judgement call in the morning as to weather I need to go in or not. Provided it doesn't get crazy high like last night... At least I have a working thermometer now. There is so much crazy stuff going on right now but I think I'm making the right choices... My brother tells me my dad is probably about 24 hours away from dying after a long alzheimers decline and my mom was diagnosed with Mesothelioma a few months ago. So long story short my brother will be unavailable to drive me because he is standing vigil by my dads bedside and my sister is vacationing in the cape. My mom wants to take me if I need to go in and to tell you the truth I think it would really make her feel better to be of some use... she's been really depressed lately but my diagnosis has brought her back to life... she now has a purpose. She was very teary when I told her she could  not take me down because she was too sick, so I called her back and told her that between the two of us we'd make it there and it would be fine and that cheered her up... a lot. Now I just need to focuss on not needing to go down to the hospital.

Link to comment
Share on other sites

Glad to hear your temp is down to normal !

 

Sad to hear of your Dad's decline.  Your Mom is going through a lot and Mesothelioma.

At least your sister is getting a break. 

 

I grew up in Boston and my Dad built us a cottage on the Cape. We spent a lot of the

summer there.

 

Hope your temp stays normal.

 

Donna G.

Link to comment
Share on other sites

Hi Donna, Thanks. My mom and I rented an RV for 5 nights on a campground towards provinctown not far from the beach, towards the end of July. We are both hoping to be able to make it. She loves the cape and just wants to hear the sound of the ocean.

Link to comment
Share on other sites

Mary,

 

Sorry I didn't respond sooner.  Was disconnected from the web when you originally posted.  My disease course took about the same as yours.  Diagnosed in my early 50s, right lung removed, then tumors in my left lung after surgery.  It took me back-to-back years of 6-cycle administered taxol carboplatin and still one tumor reappeared.  Then cyber knife technology matured to the point where the FDA approved it for lung cancer.  Have been No Evidence of Disease (NED) since 2007 but it took 4 years of fighting to get there.  A couple of suggestions:

 

Try not to put your life on hold while in treatment or during lulls after treatment.  The purpose of treatment is to extend life so assume it will and carry on.

 

Cure is really, really tough for any type of cancer.  Most of the cancer community uses NED - no evidence of disease - which means that neither doctors nor test technology can find any traces of the disease in your body.  It does however re-occur after long periods of NED.

 

You are early into a treatment process so try an relax.  Good advice on deep breathing after a bronchoscopy.  I'd also add plenty of Halls Cough Drops because they ease the soreness of my lower throat

Link to comment
Share on other sites

  • 3 weeks later...

Hi Cindy, I am feeling much better, thanks. Their is only traces of cough left. I go in for my seconf "pre-radiation" visit tomorrow and start radiation on Wednesday. It is a little frustrating, the lack of communication that I am experiencing. Both my oncologist and my Radiologist said I would benefit from Chemo along with Radiation and while the radiation dept. has been very diligent about communication and appointments etc. The Dr.'s were supposed to coordinate the chemo and radiation and I was told by the radiology dept. that my oncologist would get back to me about the chemo part of it. I never heard from them as of last week so I called them and the nurse told me the Dr. would call me back last Thursday... I have heard nothing. I called this morning because it was a hoiday weekend and the Dr. is out today and the nurse is on vacation for two weeks. My Radiation starts on Wednesday. You can imagine my frustration.

Link to comment
Share on other sites

P.S. - Just read through the post history. After my last post, the fever went up to 102.7 and stayed there so I was told to go to emergency. I did and spent 9 hours waiting only to be given antibiotics and sent home. Granted that's all I needed but it seams they could have done that over the phone. They did do an XRay and took blood but to put a patient through that kind of stress seams like a broken system. I guess you can tell I'm pretty frustrated today.

Link to comment
Share on other sites

  • 2 weeks later...

HI Mary,

I'm sorry I was away out of town when this thread started.
I hate reading that this has been so rough and that you are alone.  Please reach out to your brother and family for help. They will help you get better and I'm sure they would appreciate feeling useful.

How are you feeling this week?

Link to comment
Share on other sites

Hi Katie,

I am doing ok. I am not alone. I have good friends along with family so I feel very greatful. This is my second week of Radiation and I had one Chemo treatment on Friday which was 5 days ago. I'll be having the chemo every friday for the duration of the radiation which I think is 6 weeks or so. I have not found the radiation too bad at all except for the daily grind of it. The chemo on the other hand has been tough because I had a rather strong reaction to the antihistomines. My eyes closed pretty quickly and My speech was slurred. I had to call my sister for a ride home and leave my car there. I will speak the the Dr. about it before my next chemo and see if we can't change that drug ot maybe take less of it.  I stayed home from work tomight because I was not feeling too well having some nausea and general fatigue and discomfort so not a big fan of the chemo. Can't wait 'til it's over! Then I'm off to the cape for a week with mom where we can forget about all of this.

 

My best to all,

-Mary

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.