Breast cancer survivor now lung cancer , not lung mets.

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  • Pessa
    Pessa Member Posts: 519
    edited January 2014

    Marilyn,

    Thank you for your words of encouragement.  I am feeling better every day, though still have the nerve pain most of the time and decreased endurance.  The surgeon said I should push myself, so I went on 2 walks today, huffing and puffing.

    Take care,

    Pessa

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited January 2014

    If I may suggest....the walks are slow and the breathes are engaging the diaphragm to breath in and out at the same pace as the walk. Ultimately, do what feels right for you and your body...you'll know. "Push yourself" simply means exercise every day to the limit you feel pain then no more. It doesn't mean destroy yourself. You'll learn where that line of division takes place. 

    Did I mention that I cleaned bird feeders and filled them with food...then watched as the games began...they were happy.

    It was a little bit of work that brought enourmous returns on investment of energy. 

    Good night...time for me to hit the hay.

    Best wishes to all as always,

    Marilyn

  • Pessa
    Pessa Member Posts: 519
    edited January 2014

    Marilyn,

    Thank you for your thoughtful comments.  Walked today and paced myself.  Glad your bird feeders are filled and both you and the birds are benefiting!\Take care.

    Debbie

  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited January 2014

    greetings,

    I have a question for you might be able to give me some input.  

    I recently finished my BC treatment and surgeries.  During a CT for my last surgery the scan picked up something on my lung.  I had a CT of the lung done in November and it shows a "ground glass nodule" which is very very small.   Of course I have freaked out.  I changed my oncologist because she had her nurse call me with this news and said it was "nothing", but told me to see a pulminologist, who told me about the ground glass nodule but never used terms like cancer....said to come back in 3 months for follow up scan.

    I went to a new onc, and she was kind enough to write a prescription for a PET scan...I had been having some rib pain, but wasn't sure if musculature ...and of course was probably psychosomatic as when she wrote the prescription for the PET the pain went away.  (Probably had the pain from lack of movement after my surgery). PET showed nothing, but onc said the original CT showed nodule so small that the PET wouldn't have picked it up.

    So, that's my story.....so I in  a "wait and see".  No one is using the term cancer or METS.  I don't know if that is because it is too early?  Or they are trying to "spare me"?

    Reading your stories, how did they determine that your cancer was not BC related?  Can all lung cancer have surgery?  Any insight on if there are other tests or what I should be asking my doctors?  

    (My new onc did have a CTC and a Tumor Marker test done, both normal)

    Thank you for any insight.

    Pat

  • Maggs09
    Maggs09 Member Posts: 193
    edited January 2014

    pattysmiles, if you read my previous posts you will notice that I also had very small lung nodules, (some were "ground glass"), to small for PET to give a reliable reading. I was stressing over those nodules after previously being dx with two other primaries. Then another scan showed a couple of new ones "probably inflammatory". And although my onc explained that nodules are pretty common findings and that normally they just scan them every few months and if they don't increase in size - they are benign, I just couldn't "wait and see"... I was worried that it could be mets from either bc or colon or another primary. 

    I was referred to a thoracic surgeon who performed an open lung surgery to remove all abnormal looking tissue for pathological examination. As a result I had 8 wedges removed and some lymph nodes biopsied. All came back non cancerous, (some granulomas, some just an old post inflammatory changes)

    The reason I'm telling you this is that my terrible anxiety pushed me to go under unnecessary surgical procedure and a long and very painful recovery.  

    So if your dr is not concerned and all other tests are normal, then maybe repeating scans in a few months to monitor for any changes in size will be sufficient at this point. 

  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited January 2014

    thank you Maggs.  I have read all the posts, probably took comfort in yours and then promptly forgot what I read and started getting antsy again.

    I will cling to what you have to say before I take that drastic step for a surgery...which is something that I would do!  Thank you for the reminder and for sharing.  

    Pat

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited January 2014

    Pattsmiles, I read your post with much empathy. Maggs09 response was very appropriate.

    My "small thing" was found on an MRI followed by CT at which point they said to wait 4 months to see if it grows (international standards). It could have been a scar or a slow growing tumor that would never become a problem for me at my age (65). The 4-month wait showed some growth. Then the decision was made for lobectomy before biopsy based on two previous cancers (not mets). I was also in the middle of a transatlantic move back to US. As it happened, I had little choice but to wait until I arrived here where I did have the biopsy, also not pleasant, followed by the lobectomy to remove my upper right lobe.

    The lung cancer marker is CEA I believe. I asked as many times as necessary if this was mets...it is not. I even had a second opinion suggested by my oncologist. I've found the website for the American Cancer Society very informative and well done. 

    I agree fully with Maggs09 that this surgery is not easy to get through and recovery takes time. These are not easy decisions to make and you'll find much support here as you get through them. 

    Best wishes to all as always,

    Marilyn

  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited January 2014

    Marilyn,

    I have a question regarding the biopsy.  I almost regret having had the biopsies I did for breast cancer.  First one showed cancer, then they did another, with placing of markers...which in hindsight I guess was necessary, but still disturbs me. I almost wish it could have been a surgery and been done with...not painful biopsies but I wonder if those biopsies freed the cancer cells into the body?

    Why biopsy the lung if they think it is cancer, why not remove what is there?  Is it based on location of the cancer?  Or type of cancer? Or to verify it is indeed cancer.?  My spot is too small to biopsy.

    I will check out the ACS website.  Next scan is early February, with a follow up with the pulminologist 2 days later.  I'm scheduled for a stage 2 on my DIEP surgery the end of February in New Orleans (coinciding with Mardi Grad!)... I am traveling with 4 friends, including my MIL, no one knows that I'm being watched.  If this looks like it is larger I am debating to cancel my stage 2 surgery (I would call it mostly aesthetic at this point)...and then party hearty. I just don't know it is worth this "elective" surgery if I have something for sure growing on my lung.

    Sigh.

    Pat

  • peacestrength
    peacestrength Member Posts: 690
    edited January 2014

    Pattysmiles-I too am in this situation but was diagnosed with Sarcoidosis of the lung several years ago - I never had any follow up imaging until I was dx with bc in 2013.  I get a lung CT every 3 months now to "watch" my nodules.  I see a pulmonary specialist too who stated that my micro nodules are too small for biopsy - it drives me crazy some days.

    Maggs09-thanks for sharing your story.

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited January 2014

    Pattysmiles..."To biopsy or not to biopsy, that is the question!"...Forgive me Mr. Shakespeare. I wish I had a good answer for you but I'm not expert. Even the experts differ. So I'll tell you my stories.

    Lung: My story began in Italy where I lived for the last 12 years with my husband. I have small nodules that they are "watching". The larger, it was decided by the team, they wanted to remove without biopsy. I suppose they considered my other cancers, my concerns, etc. I researched the web and learned that Stanford will go directly to surgery without biopsy based on their findings so the Italians were in good company. But it happened that we were in the middle of a move and it was necessary for me to wait until I arrived in US. They decided to biopsy first. It was large enough. Even though I agree that the biopsy was almost as bad as the lobectomy, it still would have been a better outcome if it wasn't necessary to remove part of my lung...I miss it. It is only hindsight that is 20/20 vision. 

    Breast: I was in Italy then too. They followed international standards, biopsied, then made the decision for the lumpectomy of the 1.5 cm (malignant), clear margins...with removal of 2 sentinel nodes (clear). I've had mammo's every year since and I'm dancing the NED. In fact, I had my yearly mammo today...I'll know in a couple of days. For this I miss Italy...I knew within 30 minutes of the mammo and echo (just to be certain).

    About Cancer in general: I think it is all a crap shoot so I wouldn't stress about biopsies releasing cells...not sure that there are facts to back that theory up. I think the professional community does the best they can with what they know, and in our best interests. Simply, Cancer Sucks. Tomorrow I go for my last series of chemo.

    Whatever you decide to do medically, New Orleans is a great treat for Fat Tuesday no matter how you look at it...bucket list selection that is. Life is not a dress rehearsal...try to align with a fabulous writer and director and great cast. I really enjoyed New Orleans even with it's not so safe reputation. I saw Steel Magnolias at the theater near Jackson Square--the writer of that play was in the audience. That was a big thrill for me. In any event, be careful out there. 

    Best wishes to all as always,

    Marilyn 

  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited January 2014

    thank you peace and blundin.  I guess the old "time will tell". 

    Marilyn, I don't know the last time you were in NO, but it is my understanding, from the limo driver when I was ere last time, that after Katrina things have changed considerably for e better.  I'm from NYC originally, so always have my "spidery sense" on, regardless of where I am.  Will be there the week before Fat Tuesday...for some of the parades ...did you know it's a 2-3 week party!

    Thank you again!

    Pat

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited February 2014
  • Pessa
    Pessa Member Posts: 519
    edited February 2014

    I remember the finding from several years ago that beta-carotene increases risk of lung cancer.  I have stopped all supplements/vitamins except for vitamin D (was very low when diagnosed with breast cancer and MO recommended it.  I will talk with her again about it).  Thanks for the link.  Hope all is well with you.

    Pessa

  • Pessa
    Pessa Member Posts: 519
    edited March 2014

    Just wanted to check in to see how everyone was doing.  I returned 2 wks ago from a 2 1/2 week trip to Israel to visit my son,who is there for a few years.  I did fine on the plane ride (15 hours non-stop each way).  I did have to modify my activities somewhat while there due to some shortness of breath with certain activities.  My pain is almost all gone but not quite.  I am still frustrated by my limitations, but will now start to aggressively try to work on that by increasing my activity, etc.  Unfortunately, I have a desk job with very little activity during the day.  Will walk before I go to work in the mornings.  

    Hope all are doing well.

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited March 2014

    Good morning Pessa,

    Glad to hear that you're feeling better. I earned many frequent flyer miles when I visited my sons...children of any age are great healing motivation :-)

    Now it is 7 months out from surgery, and 2 months out from the last chemo. I feel the improvement. My shortness of breath also improved...baby steps. I started to take the dogs on walks around the neighborhood...with hills. The hills add to the aerobics. I feel like I always have a cold starting...never had this before the surgery. Hope this clears over time. The weather has much to do with this I've noticed.

    We started our garden project and hope to be planted in the next couple of months. My cousin is growing starter plants in her green house. The raised beds (hip high) are being made soon.

    Best wishes to all as always,

    Marilyn

  • Pessa
    Pessa Member Posts: 519
    edited March 2014

    Marilyn,

    Glad to hear chemo is done and that you are feeling improvement.  My endurance has improved but I have a ways to go to be back to normal.  I don't actually think I will be as the surgeon said I would "almost" get back to where I was.  I am actually having some increase in pain since I have gotten home, but it is quite manageable.  Not complaining.  Hope you continue to improve.

    Debbie(Pessa----my middle name)

  • clarkjennifer
    clarkjennifer Member Posts: 15
    edited March 2014

    Breast cancer is quite easy to treat if detected on the early stage. Most probably breast cancer cases can be treated but lung cancer is difficult to treat on the early stage also.

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited March 2014

    Pessa, try to be patient and kind with yourself. The healing is incremental. I agree with you that we probably reach a "new normal" and accept our limitations with grace. The awareness that I had a significant surgery and lost a part of my breathing capacity is ever present. 

    Clarkjennifer, Based on my readings, I think that finding early stage cancer improves our odds...but the complexity of the information in our pathology reports is what really drives the degree of difficult that follows. Unfortunately too, the timing of diagnosis is reliant on technology that can not always detect the small cells. All three of my cancer diagnosis were found by skilled medical doctors who found the cancer incidental to another of my medical issues.  My breast cancer was found by self exam and a lump that presented 10 months after my annual mammo that showed nothing.  The bladder cancer was found following a passage of significant blood in my urine; the same GYN/OB doctor who found my breast cancer sent me immediately for the echo of the bladder. The lung cancer was found incidental to an MRI I had of my spine...lucky for me they didn't wait to follow up...so far. 

    Another thought is that surgical intervention is less difficult in the breast. The lung is not as "easy" to access and surgically intervene as is the case for many other organs and bone. 

    I wish it were more simple. I've spent these last 7 months educating myself to lung cancer. I thought that it would be similar to breast cancer, but it wasn't.  

    The explosion of genetic research is leading to a horizon that includes blood tests for cancer and that is good news. Therapies, hopefully then, will follow.

    M

  • Pessa
    Pessa Member Posts: 519
    edited March 2014

    Marilyn,

    Thanks for your encouragement.  The pain and limitations are really minor but what they might represent (recurrance) is what bothers me.........

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited March 2014

    Pessa, I share that thought. We'll share our support as well. Thanks too for yours :-)

    Marilyn

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited March 2014

    Just to say...

    http://lungcancer.about.com/od/Targeted-Therapy-Lu...

    This came to my attention through Lungevity.org on Facebook

    Marilyn

  • Pessa
    Pessa Member Posts: 519
    edited April 2014
  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited May 2014

    Hi ladies.  Chiming in late here, but I've just been diagnosed with left upper lobe lung cancer also, so that makes this my second primary.  Scheduled for a lobectomy on the 15th of this month.  I'm cringing thinking of the recovery from this.  

    To answer someone's question earlier -I had asked my cardio thoracic surgeon why they wouldn't just remove it if they think it's cancer even though they weren't sure if it was breast or lung at the time.  The answer was because of the difference in treatments.  ie: breast cancer mets = chemo, while a new primary lc = lobectomy.  

    They are also thinking I"ll be early stage, but I guess we'll know for sure after the sx.  20% chance of recurrence with early stage was frightening to me also.

    How are you all doing?

  • Pessa
    Pessa Member Posts: 519
    edited May 2014

    So sorry to hear about your new diagnosis.  I had a right upper lobectomy  a little over 4 months ago(12/23/13).  The recovery was more difficult than after my mastectomies (I had 2 separate surgeries) but I have recovered.  I am still working up to my previous level of endurance (never really great to begin with) and really have minimal decrease in my exercise tolerance at this point (walk a half hour/day).   The pain is essentially resolved.  It is scarier for me than the breast cancer in terms of recurrence, but there is nothing one can do.

    Hope you have a quick recovery.  Please keep us updated with your progress. 

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited May 2014

    ITFR...Sorry also to hear of your diagnosis of 2nd primary. I agree with many of Pessa's comments. My surgery was right upper lobe (Aug 2013) followed by chemo every three weeks, 4 times (end Jan 30 2014). Be good to yourself and patient with the recovery...I should take my own advice ;-) !  Day by day I felt stronger but I've not yet returned to my previous 'normal'. That said, I'm back to tending my garden at a slower pace and happy to be there...looking forward to watching it grow and eating the produce. I bought a mixer to do the work of my less than enthusiastic arms and hands. I find as many ways to use tools rather than my energy. 

    A web site for information ... http://expertblog.lungevity.org/

    I found this web site very helpful sorting through this difficult topic.

    Pessa, good to hear that you've moved past the pain. Enjoy your walks as they will get better in time too. The dogs and me have gone completely around our neighborhood block, up and down hill. It's a good workout and I'm convinced it helps in the recovery as long as I listen to my body and take the pace that my body dictates. My cough has gotten much better as has my breathing. 

    This time is more frightening, I agree.  I'm grateful for every encouragement that my body returns to my efforts of recovery. 

    Best wishes to all as always,

    Marilyn

  • Pessa
    Pessa Member Posts: 519
    edited May 2014

    Marilyn,

    Thanks for the link.  Interesting to read.  Good to hear from you and glad that things t\continue to improve for you as well.  My 6 month CT is coming up next month and I am nervous about the results.

    IsThisFor Real, continued good wishes for your surgery on the 15th. and for a quick, and uneventful recovery!

    Pessa

  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited May 2014

    Ty Pessa and Blundin2005 for your responses and am very glad to hear you're both recovering and moving past the pain.  It takes awhile I see.  Did you have a lot of breathing exercises to do afterward?  I totally hear you about not pushing, and yet a person has to continue to try and get their breathing back. Slow and steady I guess will be my motto afterward.   Thanks for the link, I am going to head over there right away and check it out.  And also for the encouragement, it's very helpful.  And yes, I'll definitely pop back on here and let you both know how it goes.  I hope you both have a great pain free and breathful evening!

  • Pessa
    Pessa Member Posts: 519
    edited May 2014

    In terms of breathing exercises, I was only encouraged to use the incentive spirometer (the plastic tube you use to make the balls go to the top).  You will definitely be given one in the hospital.  Supposed to use it several times a day, even at home after discharge.  I was encouraged to start walking the day after surgery.  I went back to work a month after surgery (went back to work 2 weeks after the mastectomies, so you can get a sense that it does take longer to recuperate)

    All the best!  Hope to hear good news.

  • Pessa
    Pessa Member Posts: 519
    edited May 2014

    IsThisForReal

    Thinking of you.

    How did your surgery go?  I imagine you are still in the hospital.  Please update us on your recovery (hope it is quick and easy) when you are able.

    All the best.

    Pessa

  • IsThisForReal
    IsThisForReal Member Posts: 384
    edited May 2014

    Hi Pessa,

    I think it went pretty good.  They removed the lower left lobe and part of the upper left.  Turns out the tumor was near the top of the lower lobe.  Go figure hey.  I'm back home already, and only spent 5 days in hospital.  That was quite an experience, let me say!!  The epidural helped with pain but didn't block it as it was supposed to so gave me morphine for breakthrough pain.  I was up the day after and went for a short walk.  I've been doing my breathing and coughing exercises too.  Noticing I'm walking a lot less at home though, so tomorrow I'm going to set the treadmill at a very low pace and try that for walking.  It'll help me to keep track of what I'm doing also.  Coughing/sneezing is SO painful.  My BMX was a piece of cake compared to this.  The incision itself isn't sore, but the area where the chest tube was is still very very painful and is what's inhibiting my coughing etc.  I'm really hoping I'll be able to see some gains a week from now, even if they're slight.

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