Would really appreciate some advice.......

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MSL
MSL Member Posts: 101

Dear all

I am meeting with my onc on Monday to discuss my treatment plan. I'm ER/PR+HER- and de novo so have had no treatment prior. I am also premenopausal. I have some sub-cm lung nodules, no other sites involved. I had a biopsy which I understand shows the nodules have the same characteristics as my primary.

I know my onc has been considering starting aggressively with chemo, but will find out more when we sit down in a couple of days.

I'd really appreciate any thoughts/advice people might have about these matters, and also tips on the best way to approach this crucial consultation,key questions to ask etc etc

Thanks, MSL

Comments

  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2016

    I am sorry to hear about your lung nodules and was in a similar (but substantially worse) situation physically 5 years ago. My ER+/PR+/HER2- bc recurred after 18 years, and I presented with a litre of malignant pleural effusion, pericardial effusion, and multiple lung nodules. I had a cough, my voice was gone because one of the lung nodules was pressing against a laryngeal nerve that controlled one of my two vocal cords, thus paralyzing it. I also had Horner's disease as a result of the lung nodules since they were in an area that connected to my left eye and caused it to droop.

    My oncologist wanted to start me on chemo, and fortunately I sought the opinion of another oncologist who recommended that I start with hormonal therapy since I was otherwise strong and healthy. I will forever be grateful to him, since it turned out to be a good choice for me.

    In many cases, patients with hormone receptor positive breast cancer respond well to hormonal therapies.The concept behind hormonal ("endocrine") therapy is to starve the cancer cells of the estrogen hormone they need in order to thrive. For hormone positive mbc patients, hormonal therapies are normally the first-line therapy for both premenopausal and postmenopausal patients. Exceptions are patients experiencing considerable symptoms or life-threatening disease, who have major liver involvement, Central Nervous System (CNS) involvement, multiple tumors in the lung's lymphatic system, who have had early failure on hormone therapy (less than 6 months) or have been off adjuvant hormonal therapy for less than a year should consider chemotherapy and/or other therapies (possibly with hormonal therapy).

    I would strongly suggest that you consider hormonal therapy as first-line treatment unless you meet any of the above criteria, which seems doubtful. And at minimum, please consider seeking a second and possibly a third opinion about your treatment.

    If you are interested in receiving detailed information about therapies, you (and others) are welcome to request a complimentary copy of my 124-page MBC Guide by visiting: the top of this page: https://community.breastcancer.org/forum/8/topics/831507?page=2#idx_32

    With best wishes for success on your treatment, whatever you decide!

  • MSL
    MSL Member Posts: 101
    edited November 2016

    Thank you so much Bestbird, this is most helpful.

    It's all been such a dreadful shock and horror. It was initially thought I was stage 2, when these damned things appeared on what was supposed to be a baseline CT test! The doctors were shocked too as the only node involvement I had was a tiny micromet on one SN. Anyway, if anyone knows how I feel, you lovely people do.

    May I ask, did you find the hormonal treatment immediately address the lung issue, or did you have to experiment to find the right outcome. Also, what's your thoughts on getting my ovaries out? My thinking is to do that ASAP. Again, I really appreciate you taking the time to communicate with me.

    I will be ordering a copy of your MBC Guide today - it's clearly a must have for many many people!

    Finally, may I also add my voice to the many who appreciate so much your never ending energy in applying yourself to understanding and advocating about this disease in the name of those who have left us, those who are here now and those who are to come. You are a beacon of hope, knowledge and compassion for all of us. It's a very rare thing to be able to speak to people who are facing the most trying of circumstances in a way that cuts through, is truthful but kind,and of great assistance. You have all of that in spades. Blessings.



  • jamiemarie
    jamiemarie Member Posts: 73
    edited November 2016

    Hi MSL, I just wanted to say hi and respond because I see a lot of myself in you. I too am stage IV de novo, only had mets in one place (albeit liver not lungs), and premenopausal. Only you are going to know what you feel comfortable with and what path you want to take, but for what its worth, two things from my experience:

    When I was diagnosed, my doctor and a second opinion both recommended hormonal treatment. I was upset, because I wanted to be as aggressive as possible. But I listened to them and I started on hormonals (with ribociclib as part of a trial for four months). Its done amazing in knocking back the tumors- with nearly zero side effects, allowing me to work, be a mom to my son, and have a pretty normal life, all things considering. And itsstill working almost a year later. Again, you dont know how the treatment will work, but it is possible to have a response and also minimal side effects on hormonals. And the option for chemo will still be there in the future, if needed.

    When i started the trial, I had to have zoladex shots and couldnt have my ovaries removed. As soon as I was able, I had them removed and am so happy I did. I have a lot more freedom now that I dont have to go in every four weeks for the shot. And, for me, the week after zoladex was terrible in terms of mood swings and hot flashes. It still happens, but no where near as intense as on zoladex. I found the surgery to be relatively easy and felt back to normal just a few days later.

    So just some of my experience for what its worth! Good luck with whatever you decide!


  • MSL
    MSL Member Posts: 101
    edited November 2016

    Thank you jamiemarie, that's very, very helpful.

    Yes your story is very similar to mine (and I'm hoping that continues when it's my turn to respond to treatment!) Likeyou, I feel absolutely well. No symptoms at all which adds to the unreality of it all.

    I'm really pleased that you're doing so well. Being able to live a normal life with our kids and jobs becomes the most precious of hopes. (When I reflect on what used to agitate me just a few short weeks ago before this diagnosis....well you just take so much for granted when you're cancer free!!)

    It sounds like I'm headed for the hormonals, and I'll definitely get rid of the ovaries! I'll let you know how the consult with the onc goes on Monday and would again welcome your input.

    Thanks again and I look forward to keeping in touch with you on these boards.

  • pajim
    pajim Member Posts: 2,785
    edited November 2016

    MSL, the current "standard of treatment" though it is a brand new standard of treatment, is Femara plus Ibrance. Plus ovarian ablation (whether surgical or medical).

    There are two schools of thought among oncologists. One is to do hormonals period. You're ER+ so that settles it. The other school of thought likes to do chemo to "knock back" all the lesions, then switch to hormonals. That's particularly prevalent if you have a heavy cancer burden.

    I can tell you that my onc is of school number 1. Your experience may vary. The thing about treating Stage IV patients -- it's more of an art than a science. Often there is no correct answer or wrong answer.


  • MSL
    MSL Member Posts: 101
    edited November 2016

    thanks pajim

    Again very helpful. I appreciate it

  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited November 2016

    When I was dx with bone mets in 2006, I was of the opinion that I was going to tell the onc that I wanted to hit it hard with the toughest chemo would could and knock this out of the ballpark.  But after a long discussion and lots of opinions from here I learned that MBC is a marathon not a sprint.  They start with the mildest tx and work their way up.  Quality of life is important and there is no need to hit your body extremely hard with aggressive chemo tx options that could cause you to lose your hair and issues with QOL.  If your onc is willing to start with hormone tx I would go that route.  I went at least six years utilizing hormone tx options before moving to an IV chemo.  Thanks to Afinitor I am back with hormone tx options working again.  Afinitor is a newer drug that they found out will jump start the hormone drugs to work again after they have failed you.

    One last piece of advice I would give is always seek a second opinion when you are just starting out in this world.  You want to feel comfortable with your onc and seeking another opinion can sometimes help you decide which onc you feel the best with.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2016

    MSL, thank you so much for your kind words! We each do what we can to share information and provide support, and together - as with an orchestra - the net result is far greater than the sum of its parts!

    You've asked some great questions. As far as ovarian suppression via a drug such as Lupron vs. having one's ovaries removed, I haven't found any studies that provide evidence that one option is more advantageous than the other. That said, the studies may exist but I just haven't found them. My suggestion would be to have your doctor monitor your estrogen/estradiol levels if you decide to do the drugs. With regard to an oophorectomy, if done laparoscopically, it is typically not too difficult pain-wise or with regard to recovery. Perhaps you might wish to visit this thread or do some additional searching on this forum regarding the comparison: https://community.breastcancer.org/forum/8/topics/797443?page=1#post_3332087

    With regard to chemo vs. hormonal therapy in the metastatic setting, I always espouse taking the gentlest approach first whenever the outcomes tend to be similar. Unlike early stage bc, the objective of treatment for mbc is palliative, not curative. Hence it makes sense (at least for many mbc patients) to maintain as good a Quality of Life (QOL) as possible while undergoing treatment. This is one reason to start with hormonal therapy in lieu of chemo, since side effects are generally milder. In addition, there has been at least one study (on treating prostate cancer with chemotherapy) that indicates that chemo can make cancer become more aggressive and resistant to treatment. http://www.nature.com/nm/journal/v18/n9/full/nm.28... (That said, irrespective of whether mbc patients take hormonals or chemo, over time their cancer tends to become more resistant to treatment in general). And finally, since chemo side effects tend to be more toxic, there can be more danger of experiencing heart-related and other issues as a result of chemo than with hormonals.

    I was fortunate in that the AI hormonal therapy prescribed by my oncologist began working and I did not need to experiment. I also immediately altered my diet and began working with an NO several months after diagnosis. I am very grateful to my conventional and supplemental medical teams.

    I hope this helps a bit, and send good wishes!


  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    I have just last week been DX with return of BC in my liver. I was originally DX with TN but this recurrence is strongly ER+ (95%) My MO has started me on Arimidex. I was wanting to go out with all guns possible, and felt quite unsure about hormone therapy only. Your posts have been very reassuring.

    I wanted to ask, how do you know if it's working - do you have regular scans or does your MO use blood tests including tumor markers?


  • jamiemarie
    jamiemarie Member Posts: 73
    edited November 2016

    Hi Scwilly, my doctor relies on scans. My tumor markers have never been a good indicator for me- they've never been outside the normal range. There are others, though, where tumor markers are a good indication of whats going on, good or bad. I think nearly alldoctors still rely on scans, though, for confirmation. I get CT scans every three months, I know others have PET scans, but Ive never had one, so can't speak to those.

    MSL, I forgot to mention, another thing when considering an oopherectomy- zoladex cost me nearly $200 for each shot (every month) after insurance. The surgery was about the same cost, and now I dont have to pay for the shot each month. Just something else to consider. Needles dont bother me either, but the needle for zoladex is huge! The nurses would always give me novocaine to numb the area ahead of time.

  • MSL
    MSL Member Posts: 101
    edited November 2016

    Thanks all - I'll let you know how appointment goes

  • Bestbird
    Bestbird Member Posts: 2,818
    edited November 2016

    Scwilly, as jamiemarie indicated, Tumor Markers (TMs) are not accurate for everyone, and mine were always within normal range. Hence my oncologist and I utilize scans. That said, over time we have begun to rely more on how I am feeling, as scanning can cause health issues due to radiation. If I have a physical issue, then we'll scan; if not, we don't.

    As I indicated above, I also work with a Naturopathic Oncologist, who periodically orders lab tests for key cancer indicators such as VEGF, IL-8, etc. If the indicators begin to climb, my supplement protocol is adjusted and I re-take the tests a few months thereafter to ensure that the revised protocol is keeping things where they need to be.

    I hope your new treatment works extremely well for you!

  • MSL
    MSL Member Posts: 101
    edited November 2016

    Hey all

    Just wanted to let you know I had a terrific meeting with the onc. We are going the hormonal route and hopefully I can also join a trial that's commencing shortly (I felt inspired by you jamiemarie)

    I felt good, he was really positive and I knew my stuff for our discussion (thanks to you guys!).

    First thing we're going to do is whip the ovaries out and then we're away.

    Again, thanks so much for your help xx

  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited November 2016

    glad to hear your appt went so well!  It helps to show up informed and with questions, really does make you feel better.

  • jamiemarie
    jamiemarie Member Posts: 73
    edited November 2016

    Hi MSL, so glad to hear your appointment went well! That makes me so happy!! :

  • zarovka
    zarovka Member Posts: 3,607
    edited November 2016

    MSL - You have gotten the good advice already. I was given the options of chemo vs hormonal and went with letrozol and ibrance; however I am 52 so they induced menopause to make that protocol an option for me. Working so far.

    Welcome. Know that many people here are doing well. We are all interested in trials and especially real individual experience on trials. If you do enter a trial, start a new thread and tell us all about it.

    When the dust settle, come join us on the Stage IV Fitness thread. It's hard to believe but the American Cancer Society recommends 150 minutes of cardio per week for cancer patients, based on trials that show substantive improvements in outcome. Easier said than done, but it's definitely hard to feel sick after a workout. Hope to see you there.

    >Z<

  • MSL
    MSL Member Posts: 101
    edited November 2016

    Thanks for your responses - I really looked forward to giving you the update, which made me realise how quickly I have felt part of this community.

    I will absolutely fill you in if/when I know more about the trial.

    And I'll be joining in on the fitness - I've always been a runner and can't wait to get back out there (just got the ovary surgery to go.....). I've been so impressed by you guys and the stuff you do!

    Also, thanks Z for being so generous with all of your research and expertise, you're a fountain of knowledge.

    And finally, in celebration of small victories, I did my hair and shaved my legs today which is about the most normal thing I've done in 5 weeks, and damn it felt good xx

  • Scwilly
    Scwilly Member Posts: 489
    edited November 2016

    Thanks all for the advice regarding monitoring. I've been a week on Arimidex, and I don't want to jump to conclusions, already feel my pain from my liver is reduced. Even if it's coincidental, less pain is always welcome. Your posts are so informative and will really help me formulate my Q's for when I meet with my MO begining of December.

    MSL: so happy to hear you are looking after yourself. I know the feeling of being in limbo and getting back to some normality is such a boost. Keep looking after yourself and best wishes for your TX! We will rock with these 'hormonals'!

  • stagefree
    stagefree Member Posts: 2,780
    edited November 2016

    dear MSL,

    Once the route is set, the rest follows and this new normal feels ok and bearable. Happy to read all has been ok so far.. I ditto all, especially Bestbird, who offers great advice always!

    Hugs

    Ebru

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