Advice please

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Yvette1952
Yvette1952 Member Posts: 24
edited February 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hi, I have been reading postings on this site since Oct 2018 when I was first diagnosed as stage 4 with a single lesion to liver. My background is breast cancer in 2014, lumpectomy and Radiotheraphy. Cancer returned in the same breast 2017. Mastectomy and reconstruction followed by lymph node dissection (9 positive)chemotherapy and Radiotheraphy. Scans at this time showed 2 suspicious lung nodules which were found to be benign but a liver lesion popped up on the next scan. It took a few scans and a liver specialist to decide that the lesion was mets. When my oncologist told me he said did I want to know what would happen and I said yes. He said it was terminal and that there are different treatments and then they run out! I came out of there feeling as though I had weeks to live and then got angry. I told the breast care nurse how I felt in no uncertain terms.

I had microwave ablation on liver in December and am due to see the specialist in Feb to see if ablation was successful.

In the meantime bone scan is showing a fractured sternum. The oncologist is saying he thinks it is cancer, my thyroid consultant who is also a bone specialist said it could have been caused by radiation due to bone thinning.

New scans are showing nothing new, which I think is good but my oncologist keeps on about the sternum and is talking about putting me on oral chemo. In the same breath he said your cancer is currently in remission.

I am due to have another scan in three months and then review with oncologist. I don't want to go on chemo unless I absolutely have too and would like your views on this please. Also what are your views about negative oncologists. I dread meeting with him!!

I am PR/ER positive and HR negative Grade 3

Thank you all

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  • Moderators
    Moderators Member Posts: 25,912
    edited February 2019

    Hi Yvette, and welcome to Breastcancer.org!

    We're so sorry to hear of your diagnosis, but we're really glad you've found us. You're sure to find our Community a wonderful source of information, advice, and support -- we're all here for you!

    We are also dismayed about the pessimism and attitude your oncologist displayed -- no one should be treated so bluntly in such a fragile situation. Have you considered switching oncologists or at least getting a second opinion with someone you feel more comfortable with?

    You'll see by being here on the boards that many of our members are living long, fulfilling lives even after being diagnosed metastatic. There ARE treatments and there is always the possibility that you can one day be NED. Don't give up hope and definitely don't let one negative doctor outline your future!

    We are all here to support you, however you need. We're sure others will be by shortly to weigh in with their thoughts and experience. We look forward to hearing more from you soon!

    --The Mods

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    Yvette,

    Certainly you need a second opinion, preferably at a major cancer center and by someone who specializes in breast cancer. Yes stage IV is "terminal", however treatments are far from "running out", in fact the possibility of a "functional cure", in which you live a normal lifespan albeit under treatment with one drug or another, is closer to reality than it has ever been. No guarantees, but no-one knows the future, least of all that guy. You want to stay away from chemotherapy for as long as possible, and aim for targeted drugs. You don't list drugs you are taking, the normal would be to start with Ibrance-Femara..

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  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited February 2019

    Yvette,

    Wow! Anyone would feel as you do. Is changing oncologists an option?

    When I had a regional recurrence many years ago, my oncologist was so negative. He was a skilled doctor and very thorough, but he thought out loud in a big booming voice, and he would always say "It's not a matter of if--it's a matter of when" I would have widespread metastases. I asked him how long, and he said three years, if all went well, although he knew of someone who lived five years with my profile. (That was1989!) I stayed with him for 11 years, dreading every visit. Finally I switched to another oncologist in that same practice who has been great. When I did develop metastases in 2012, he said, "we can make it better." I don't dread seeming him at all. I don't know why I waited so long to switch to a compassionate, equally skilled and thorough doctor.

    Please spare yourself that negativity--it's too hard on a person.

    Sending you good wishes!

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  • Kayla250
    Kayla250 Member Posts: 201
    edited February 2019

    hi Yvette,

    We have very similar histories, less bone involvement, right down to reading posts, yet not posting myself.

    My onc used the words “no cure but very treatable”; terminal sounds too harsh, and I agree that that was extremely insensitive.

    I had my first baseline CT in November and started Ibrance/Letrozole immediately. I have some fatigue and very dry skin so far but that’s it for side effects. I will have my next CT next week to see if there is any progression. Reading posts on the Ibrance thread as well as the liver mets thread gives me the confidence that this first line treatment will work just fine. My doctors sometimes refer to this treatment as “Chemo”, only in that it is a drug intended to stop the grow of cancer cells. I encourage you to not be afraid of this type of treatment, they are pills taken by mouth and maybe this is the treatment he is referring to.

    I am very happy with how my doctors and nurses interact with me and I’m sure it’s how I got through the initial diagnosis with a peace, in fact have always given me hope. Yes, an oncologist change might be the answer for you.

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  • Husband11
    Husband11 Member Posts: 2,264
    edited February 2019

    If there is any question as to whether the sternum has mets, a biopsy is in order to clear that up. Guesswork shouldn't play a role unless there is no other option.

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  • Yvette1952
    Yvette1952 Member Posts: 24
    edited February 2019

    Thank you for your response. It is Xeloda he is talking of, he has given me information sheet. I have three months before I see him again so am going to do lots of research. Will look at options re different oncologist

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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    Yvette, Hopefully, you are taking drugs of some kind right now? Probably Ibrance-Femara or Ibrance-Faslodex? Normally one would not go onto Xeloda until after the anti-hormonals have stopped working. Xeolda is indeed a chemo, although it is given in a pill form. There are multiple other targeted drugs you could take before moving to Xeloda or any kind of chemo. And if you are not on any drugs,waiting three more months to start treatment would be unacceptable, based on a diagnosis from last fall. Where are you being treated?

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  • 7of9
    7of9 Member Posts: 833
    edited February 2019

    Yvette, I had 2 broken ribs from rads...it's common. They didn't find them until a year later when I had a CAT scan (or was it 6 months?) I don't know...I just thought Taxotere was supposed to hurt (had rads first then chemo). I don't know if I'm stage 3C or 4 and my nurse practitioner said they don't reclassify (sigh of relief). Though the surgeon who did my hysterectomy referred to it as mets. Whatever. That was 3 years ago. I'm NED and on arimidex only (ok - attivan - was for all my worries about BC, now lately its for my stressful shitty job and coworkers). My onc is a bit dry and dull. I hated it when he used the terms "treatment failed" because I recurred locally or regionally or whatever they want to call it (axilla). Whatever. Ambien bed. Repeat.

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  • JFL
    JFL Member Posts: 1,947
    edited February 2019

    Hi Yvette. Welcome to these boards. The fractures could be from rads or bone mets. Sounds like more tests need to be done to confirm which? Any chance something can be done before three months from now? Seems like a long time to wait. So much of our experience is our relationship with our MO. If you are left with a bad taste in your mouth, it may be worthwhile to look into another one. I had a not so great MO before my current MO and it left me with a lot of negative energy and I had to fight (many times unsuccessfully) to get what I wanted from treatment and side effect management and felt like I was in the wrong for asking for various things. My experience is like night and day with my second MO. Honestly, I have found some of my doctors have downplayed things or told me white lies over the years (e.g., when I first was diagnosed, the breast surgeon told me I have a “little” cancer while using his index finger and thumb to show a tiny measurement, despite the fact I had 6 tumors in my breast). In hindsight, I am glad they did. I would not have been able to handle a more harsh approach from an emotional standpoint. And I research everything and read all of my scans so I know the full story at the end of the day. I suspect your MO was trying to do you a favor being what he thought was “candid”, but, at the end of the day, each person’s experience is different and no MO knows how each of us will respond to treatment and fare through all of this. Despite all of their medical training, they are not in a position to guess our individual prognosis.

    For what it is worth, if your possible oral chemo is Xeloda, I found it the most tolerable of all treatments to date and the most effective. I took if for about 14 months. I would have been fine being on it permanently. The idea of being on any chemos is not fun but many find it more tolerable than even hormone therapy.
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  • Sue2009
    Sue2009 Member Posts: 228
    edited February 2019

    Yvette, I fractured my sternum last June while white water rafting. It has taken 6 months to heal. Last May my mets went from bone to liver. My R/O has hit it twice w/low doses of radiation. I was stage 4 in 2009, to my bones. Stay positive. I have walked over 3/4 up a light house in Long Beach Island last sept, spent Christmas in Boston w/my son & daughter in-law. Now my 6 kids want to do acruise in May. I wear a fentanyl patch & take oxycodone for breakthrough pain. I have also gone thru 4 MO’s. One retired on me, other 2 fired. I was an RN, hated to go on disability, but if I had kept working, I would be gone by now. Your sternum will heal, & gentle huggs.

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  • Yvette1952
    Yvette1952 Member Posts: 24
    edited February 2019

    Thank you all for your kind words. I need a pick me up today. Have just returned from the hospital that did my liver ablation. That one seems fine but another has popped up, which is making them think that I need chemo and then scan to see if another ablation is required. I had long discussions with the medical team about my oncologist and they were very good listeners and said that if I really can't get on with him I can change. At least the option is there. I need to see my oncologist within the next couple of weeks to decide on treatment. The thought of chemo again is really scaring me, I went all through last summer feeling rubbish and don't know if I can take it again. Thought I had another three months respite before next scan. Sure I will feel better tomorrow but today is not good

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