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  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2018

    VL22, the pain you're describing does not sound like typical bone mets pain to me -- especially because it comes and goes. And looking at your stats and the fact that you had a PET just a few months ago supports my initial reaction.

    I'm curious though, why did you have chemo with a <1 cm ER+ Her2- bc that was Grade 1 with no node involvement? Did you have a high Oncotype score? Deanna

  • VL22
    VL22 Member Posts: 851
    edited February 2018

    that was my initial diagnosis. During surgery, found 1 cm TN tumor and a micromet to a intramammary node next to the er+ tumor

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2018

    Oh, I see! Thanks for clarifying! Just to add some thoughts... It can take many months for any latent effects from chemo to dissapate. I remember having a severe, stabbing pain in my right shin for several months after chemo, for which there was no explanation -- just some random nerves firing or something like that. Also, the fact that you mention pain in your knees led me to think it's something other than mets, as mets very rarely turns up in knees.

    Are you on thyroid meds now, or are they waiting to see if you recover naturally from whatever is going on with your thyroid function? That might explain the skin sensitivity.

    If I was in your situation, I would probably give it more time following R/T before worrying just yet. But if the pain becomes worse or truly is impacting your QOL, then you may want some additional blood work, etc., to figure out if something else is going on -- not mets necessarily, but something else that's gotten out of whack.

    Good luck finishing up R/T. Please keep us posted! Deanna

  • VL22
    VL22 Member Posts: 851
    edited February 2018

    Thanks Deanna - I really appreciate your imput. I’ve been on meds for hypothyroidism for three years and in normal range - the chemo put me way out of that range.

    I had my weekly appt with my RO today and she said what I’m experiencing can be “fairly common”. It is more mentally draining than anyth anything.

    Thanks again

  • indahood
    indahood Member Posts: 152
    edited February 2018

    Hi, I am not stage 4, stage 2, but have a friend who is stage 4. I have not seen her in a year as I was away traveling before being diagnosed myself. Since I have been back, I have reached out to her and at first, before I was dx, she was into going out for coffee but since I have been diagnosed, she is not very receptive to seeing me. Any stage 4 people out there know what she must be feeling? I am for sure respecting her need for space, and not pushing at all, but I would like to understand. It would be nice to be able to rekindle our friendship, and for me since I too am going through chemo. Anyway, if anyone has some insight for me I would love it so that I can be as gentle as I can with my friend.

    Laurie

  • Leapfrog
    Leapfrog Member Posts: 464
    edited February 2018

    Hi indahood...I'm Stage 4 so I'll give you my thoughts. Bear in mind that these are my thoughts and in all likelihood bear no resemblance to those of your friend. Firstly, if you haven't seen her in a year it's possible that there has been a change in her thinking during that time. Speaking for myself, a year ago I had been diagnosed for four months and until recently I've been in denial. I have a very confident, positive attitude but reality has dawned upon me that I will never be cured, that I will live with this disease until I die, either from it or from something else before cancer takes me. Because of my cancer I've had to move out of my home and into a small apartment because my husband and son work full time and our house is large with stairs. They travel for business so a lot of the time I have to look after myself which is impossible in a large house but just possible in the tiny apartment. Only just. My husband is past retirement age but has continued to work because we don't know what is in front of us financially. We may have to spend a lot of money to have a carer look after me if I progress. We live on a knife edge from scan to scan every three months to find out whether I'm still stable. Fortunately, so far so good but it's never out of the back of our minds.

    This is the difference between having curable disease and incurable disease. At Stage 2 you have every hope of remission or cure. At Stage 4 we will never be cured. Our hopes are always for stable disease and the very very best we hope for is regression but it depends on our prognosis, the site of the mets, the amount of mets and whether we are responding to treatment or whether treatment is at least controlling the disease.

    Your friend might not feel like discussing her breast cancer with anyone or perhaps with you because of fatigue, sickness or just plain being fed up with having cancer and not wanting to talk about it. Sweetie, the fact that you are both having chemo at the same time doesn't give you common ground when one is at Stage 2 and the other is at Stage 4. Also, at Stage 4 cancer has taken over our lives and has done so usually for a long time and the last thing we want to do is talk it over. We're either too unwell or we're looking for diversion from it.

    She also more than likely is no longer into going for coffee. A lot of us have stopped doing that. In my case it's because I have mets in my bones and I'm in a lot of pain and chairs at cafes are uncomfortable and leave me in worse pain for several days afterwards. Sadly, a lot of us can no longer drive. I can't because of the opiate pain meds I need. We have low white cell counts from our treatments and are told not to be in crowded places for risk of picking up an infection that leaves us in hospital.

    I've spent a lot of time considering your situation, Laurie and trying to express it carefully. This is only my take on it but I think it's probably how I might feel if I were this friend at the moment. I hope this helps you sweetie.

  • maryland
    maryland Member Posts: 1,298
    edited February 2018

    Hi girls, just wanted to stop in to say my MRI was clear! Just scar tissue, phew! Respiratory crud is finally gone and I'll be having my knee replacement on Wednesday as planned. Thanks for all your kind word and the board to voice my concerns, It's so appreciated.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited February 2018

    Good to hear that all is good, Genny. Goodluck with your knee replacement.

    Love n hugs. Chrissy

  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited February 2018

    Indahood-one of my reasons for not wanting to be with those with BC who are not Stage IV is not to frighten them. We just can't know who will progress to StageIV, so why make people fret unnecessarily. Also , it takes someone with Stage iV to truly empathize with another Stage lV person.

    Best, MJH

  • siddhivinayak
    siddhivinayak Member Posts: 78
    edited February 2018

    Hi to all my mom was diagnosed with stage 3 breast cancer in 2015.

    Now from past 3-4 months she feels something tickly in her throat and frequent throat clearing.Tickling feeling make her cough hard but nothing comes up.This is continued from past 3-4 months and tickling occurs 4-5 times a day everyday.She tried gurgling but of no help.So her onco ordered pet/ct which showed reccurence in the same breast and one lung noule in each lung the nodule on the left lung same side as bc showed mild fdg uptake.Both nodules are subcentimetric.

    Currently we are waiting for biopsy results from her new 2cm mass .Also both lung nodules are ground glass.The one on the left side was there in ct scan of sept 2017.And the right one is pleural based. please help.

  • chrissyb
    chrissyb Member Posts: 16,818
    edited February 2018

    Hi Katie, sorry to hear about your mums' recurrence.  I have had the ground glass nodules in my lungs for years.......they never change and are apparently quite a common occurrence.  They will always show up on scans but after having them there for years I no longer worry about them at all.  

    Keeping everything crossed that your mum does well with her new treatment.

    Love n hugs.  Chrissy

  • siddhivinayak
    siddhivinayak Member Posts: 78
    edited February 2018

    Thnq chrissy.We are waitinng for biopsy results but the mass on the breast lit up badly with max suv=6.3.I hope all comes good. I am too much worried.

  • wintersocks
    wintersocks Member Posts: 922
    edited February 2018

    Hi Ladies

    I saw the GP about 3 weeks ago and had some blood tests which I was told today were clear. I explained to the receptionist that I had still had intermittent arm pain still and what was i to do about that?

    She said she would get a GP to call me and todaY, she called and said she had he letter in front of her form the Prof of onc (he must have seen the blood test results) and she said he says something like poss mets to chest wall and that I need reviewing and an MRI might be then ordered, So she says can you come into tomorrow for a thorough physical exam and I said no. meetings at work tomorrow. So she says Thursday and i said yes. so at 6 it is. She asked me about the pain: it is intermittent and sometimes goes for weeks and then is back and goes from shoulder to hands/fingers and up/down the arm (cancer side) and is a real deep pain. then it goes again.

    Says she: mets pain is constant and tends to get worse over time and it doesn't sound particularly worrying. but let's have a look at you. I told her that no one had contacted me either about the Onc letter or blood tests. She apologises and says 'Yes you seem to have drifted' sorry.

    The NHS here in Blighty is a real mess - but really if I had not been in touch I would have been left.

    It's my eldest sons birthday today he's 24 and honestly I don't know how I stopped from crying when I spoke with him on the phone to wish him HB ; I didn't tell him about the latest.

    Any thoughts any one?

    Please.

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2018

    Wintersocks, I'm so sorry about the worry and stress you're going through. My first thought is that I agree with the new GP -- mets pain probably would be increasing and not remain intermittent. And as sorry as I am it's happened to you, her choice of the word "drifted" is stellar and a bit amusing because it seems to put the blame on you, rather than them "dropping the ball" or letting you "slip through the cracks," more commonly used euphemisms here in the US.

    So if the blood work you had is clear, I do not get where the "possible mets to chest wall" is coming from, or why IF that is a possible concern, you are being referred back to a GP. Something isn't adding up. I'm not a doctor, but the intermittent pain sounds like something possibly to do with your spine, which an MRI will divulge if they include the spine. And your onc sending you back to a GP for a complete physical doesn't sound like he is overly concerned about mets, so it just doesn't quite make sense to me.

    At any rate, you are so right about needing to be our own advocates! I'm glad the new GP can see you quickly, and I hope you get an answer to your pain that has nothing to do with mets! Please keep us in the loop, and In the meantime, try to enjoy and celebrate your son's 24th birthday!

    Lindahood, I'm going to offer another explanation for your friend's absence, which is simply that she might have something major aside from mbc going on in her life that's taking up her time and energy at the moment and putting seeing friends on the back burner. In other words, nothing at all to do with you personally, but she just has other demands (an illness besides her own in her family, for example) that needs the often limited amount of energy we have. The other explanation might be a sudden turn in her own health, in which case she might be totally focused on trying to get things back on a better track. I would probably just try to give it some time, but continue to communicate that she's on your mind and you look forward to getting together when she's up to it.

    genny, great news on your MRI! So happy to hear all is clear and that you're feeling better!

    Hugs to all, Deanna




  • MRock
    MRock Member Posts: 49
    edited February 2018

    Hi Wintersocks,

    I'm so sorry you're going through this and am glad you can see your GP tomorrow.

    I have to say that when I read the explanation of your pain and how it presents, my first thought was lymphedema. I imagine you've seen a lymphedema specialist - ? If you haven't, ask to be referred to one. Those of us who had lymph nodes removed and then radiation are at great risk for it. The pain my lymphedema causes is deep and intermittent, often shooting, and wearing a compression sleeve helps tremendously.

    Send me a private message if you want to ask more questions about this.

    I'm not stage IV but thank all of you who monitor this for us.

  • wintersocks
    wintersocks Member Posts: 922
    edited February 2018

    MRock

    Thanks for this, I was wondering about lymphedema too. I did have it very mildly when I was first dx. I saw a nurse about it and she gave me a sleeve, It was so tight that I abandoned it, I didn't realise lymphedema can cause that kind of pain I just though the limb swelled. I will mention that tomorrow. I may pm you tomorrow once I have seen the GP.If that's ok. Thanks for taking he time to tell me this.

    dlb823

    Yes, 'drifted' is a little amusing isn't it? say 5 years ago I would have been back to the onc but the NHS is in a real state here you might have read about it. I think the Onc is advising the GP what to do next. I think it's cost cutting and it's not making me feel good. I think it will be the GP who decides whether an MRI is indicated. Thanks for this too.

    So, I will update tomorrow

  • LaurenH
    LaurenH Member Posts: 389
    edited February 2018

    Hi - I am new here and posted in another thread and thought I'd also post here. I've read about 80 of the 144 pages here and have learned a lot. Thank you all for that.

    My question is - has anyone ever had a bone biopsy after a suspicious MRI and PET for a bone met?

    I am 15 years from a Stage 2a, 1.5cm 1/23 node IDC ER/PR/HER2+ dx. Did surgery, AC+T, rads, 18 months of Herceptin and 11 years of Arimidex (lupron then complete hysterectomy). I was 33 when dx and am 48 now.

    My annual Breast MRI showed a spot on my 2nd anterior rib so Onc ordered blood work (all normal) and a PET scn. Rib was bright on PET but all else clear. It is a 5.1cm x 2.1 lesion. Onc thinks it odd to have only 1 met and for it to show up first on a rib. Also odd to be this shape and size. Hence biopsy this past Monday.

    I will see him tomorrow for results and I'm just looking for any hope that this might not be Mets. Dr Google has not been helpful in finding a reasonable alternative. ☹️ Also - Ihave no pain there, no matter how hard my Onc pressed on it.

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2018

    Lauren, it's very hard to say if this will turn out to be a tiny metastatic spot. Hopefully, it's not. But what might surprise you and is excellent news is -- even if it is a tiny spot of mbc, it would be considered ogliometastatic, which is not viewed the same as other metastatic recurrences, and is actually treated as curable.

    I hope and pray your biopsy is negative, but I hope this information will ease your mind.

    I'll check back here to follow up with you tomorrow. Hugs, and I'll be thinking of you, hoping for only good news. Deanna

  • LaurenH
    LaurenH Member Posts: 389
    edited February 2018

    Deanna - thank you so much. That gives me so much hope. I have seen that word on this site but it was new to me. I will do some reading and if I get the news tomorrow that this is Mets, I will discuss this concept with my MO and perhaps consider more aggressive treatment.

    Bless you for your kind response.

    Lauren

  • MRock
    MRock Member Posts: 49
    edited February 2018

    Hi Wintersocks, we hope to hear it's "just" lymphedema. I've sent you a private message. Many hugs

  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited February 2018

    wintersocks-My gut reaction to your post screamed "Lymphedema".

    Best, MJH

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2018

    Wintersocks, I went back and reread your original post after MRock suggested lymphedema as a possibility, and agree that it very well could be that. Read up on truncal LE as well. It's not always just in an arm. And not sure if it was mentioned, but heat can exacerbate LE, so if you can connect any of the pain flares with something like hot baths or hot tub use or even an intense work out, that might be a further clue to LE. Deanna

  • LaurenH
    LaurenH Member Posts: 389
    edited February 2018

    Hi All - Well, I got the news I wasn’t wishing for but somehow I have a calm peace about it. This spot on my rib was positive for MBC. Waiting for those results was torture and I am one who likes to have a clear plan in place.

    Deanna - you were dead on in your analysis and My MO is treating it as oligiometestatic (sp?). He wants to radiate it even though I have no pain, along with hormonal and targeted therapy.

    Thanks so much for your support!

    Lauren

  • CIW
    CIW Member Posts: 76
    edited February 2018

    imageimageI finished chemo a couple weeks ago but am concerned about this growing spot on my leg. It's not painful. Itches only a tiny bit. Blanchable. Not a bruise. Is this a skin met? I'm confused/concerned. Any experience/feedback on this would be appreciated. Thank you. Top picture Jan 29. Bottom picture today 2/15

  • LaurenH
    LaurenH Member Posts: 389
    edited February 2018

    I am certainly not an expert, but this looks like contact dermatitis (allergy to something that touched the skin) or an infection to me. I get contact dermatitis all the time and it looks exactly like that. Try an OTC hydrocortisone cream and see if it clears up.

    I don’t think skin Mets are likely to show up on a leg. I have only ever read about them on or near the scar and perhaps also on the scalp. Maybe ask your MO or a dermatologist.

  • dlb823
    dlb823 Member Posts: 9,430
    edited February 2018

    Lauren, I’m so sorry. Your outcome is never what any of us wants to hear. But it sounds like you have an excellent onc and are handling the situation as well as can be expected. Feel free to continue to reach out to us if we can help. And just know that many women in your situation quickly reach NED and stay there.

  • Artista964
    Artista964 Member Posts: 530
    edited February 2018

    there is no cure. Don't know why people use the word curable. Ned is the best case outcome for the rest of our lives, any stage...

  • wintersocks
    wintersocks Member Posts: 922
    edited February 2018

    Dear Ladies

    Thanks for your thoughts, I saw the GP and she said nothing looked amiss after a physical exam; but she wanted to refer me back to the onc within the next 2 weeks, She turned the computer round to show me what he had written and I could only see 'poss mets to Brachial plexus' - which is a bundle of nerves I think in the general breast/ shoulder area.

    The Gp said she did not think it was mets as it was not getting worse and I can go for a few weeks with no pain at all then it comes back. In his notes he wrote I may need a bone scan with isotope?? Meanwhile she has put me on amitriptyline to help with the pain. All my blood tests are normal = I don't know what to think now!

  • siddhivinayak
    siddhivinayak Member Posts: 78
    edited March 2018

    I got copy of my mom's pet/ct report.Can anyone explain me about the lung nodules.Breast lesion was confirmed as Fat necrosis by needle core biopsy.But the lung nodules are suspicious for mets.She has atleast 10 nodules in bilateral lungs all are smaller than 5mm-6mm.Is there chance that it is mets??All are ground glass nodules.

    image

  • pajim
    pajim Member Posts: 2,785
    edited February 2018

    Katie, lung nodules are VERY common. If you give the person on the street a PET/CT it is likely they'll find nodules. I have one and it hasn't grown in 10 years so it's not cancer.

    The nodules can be inflammatory, or infectious or some other kind of cause. What doctors usually do is wait for 3-6 months then scan again. If they haven't grown they aren't cancer.

    The wife of a colleague of mine had this problem. A whole bunch of lung nodules. They did all sorts of tests and never did figure out what caused them. Eventually (a year later?) they disappeared from the scans.

    So they may not be cancer, particularly if the breast lesion was nothing.

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