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  • Momine
    Momine Member Posts: 7,859
    edited August 2013

    Barb, I thought of you a few days ago, when I suddenly developed a steady and quite insistent pain in my upper quadrant on the cancer side. As for you, it hurt to breathe and felt almost like a broken rib. 

    After 24 hours of this, I took an ibuprofen, which helped a little. The next day it was still bad, so I decided to put on my LE sleeve and glove and go to the gym, to see if I could unkink it. The gym didn't help much either, but I kept the sleeve on all day and the next day, and that did the trick. When the pain started subsiding, I realized it was actually a kind of frozen shoulder pain. My arm did not look/feel swollen, but it felt heavy. After 2 days of weraing the sleeve, the arm felt better and the shoulder/back pain was gone.

    So, I conclude that it was most likely inflammation and backed up lymph fluid. Just a thought.

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  • bak94
    bak94 Member Posts: 1,846
    edited August 2013

    Ninja

    It seems it could be anything, but it is always best to get it checked out. I had all kinds of symptoms from taking aromasin and had to stop taking it. I know it is so scary to go get checked out, but you will probably find out it is something simple and will feel so much better knowing.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    Ninja~~I'd get it checked just for the piece of mind, but just so you know, cough is one side effect of arimidex.



    Here's the link.........



    Paula



    http://www.arimidex.com/about-arimidex/side-effects.aspx

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  • Rowan47
    Rowan47 Member Posts: 151
    edited August 2013

    Ninja, sorry to hear you are having lung issues. I declined any hormone therapy so can't offer any insight. Have you made doc appt??

    I got results of xray today. It showed abnormal spots on my right shoulder, clavicle and lower spine. Maybe arthritis? My BS is ordering bone scan (she marked it as urgent), for next week, I hope. I do think that it probably is arthritis (brought on by chemo?), but not sure if a hard painless lump on supraclavicle is a symptom of this......waiting is not nice.....

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    Hello ladies , I guess I will chime in. If you are having pain for more than a few weeks and you can't explain it, get it checked. I'm a year out of dx, still getting herceptin. My lower left back has been hurting for over a month. When it first started I told my oncologist and they said it could be from the tamoxifen.Weeks later it still ached so I went to my family doctor. He ordered an xray which camber back fine, then ordered a bone scan. I had my bone scan on Monday and had my results the next day. They found a spot on my L4 that they think could be cancer. I just had an mri this morning and I'm waiting for the results. My oncologist wanted me to have a pet scan too, but my insurance debited it. So, now I have a ct scan on Monday. To say that I'm nervous isa an understatement. I'm 33 with 2 kids...

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  • Rowan47
    Rowan47 Member Posts: 151
    edited August 2013

    Beth, that's awful...please know that I'm thinking of you and hoping for good results x

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  • hopefour
    hopefour Member Posts: 459
    edited August 2013

    Bethcon1...please keep us updated on your results. My heart is always heavy when I hear of precious young moms dealing with BC. I have already prayed all is well, but if not you have caught it early and you'll be in remission again soon!!

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    My oncologist called me yesterday with the results of the mri. After a closer look at the area they are saying its definitely cancer. Now I need a biopsy to see if it's her2+, because if it is then the herceptin that I've been on for almost a year hasn't been working! I'm looking into some larger cancer centers in Philly, Im terrified at this point and I think I'm done with local doctors...I guess this bumps me to stage 4. :(

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  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited August 2013

    Bethcon1



    I wanted you to know how sorry I am to learn that your cancer has progressed. I think a second opinion at a large center is a good idea. Breat cancer is a dreadful, unfair disease. I'm thinking about you.

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  • Momine
    Momine Member Posts: 7,859
    edited August 2013

    Beth, that truly bites, and I am so sorry. On the semi-bright side, small bone mets can often be knocked back and stay that way for a very long time.

    Getting yourself to a major center sounds like an excellent idea.

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    I just talked to someone from Cancer Treatment Centers of America in Philly and they really made me feel soooo much better. As long as my insurance checks out I should be able to go there.

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  • hopefour
    hopefour Member Posts: 459
    edited August 2013

    BethCon1...I just checked in to see if you had heard anything...I am so sorry, but also hopeful. I agree with seeking info from a Major Cancer Center in regards to treatment options. You will always be part of the stage 3 sisters, but now you also can gain the wonderful wisdom and support of the stage 4 sisters. I personally love to read all the encouragement and wisdom of Chrissyb...she is a stage 4 sister and I know she would be right there for you. There is also a thread on stage 4 for woman in their 30's.

    MD Anderson told me that they see stage 4 as treatable and many live for many years. Please, keep us posted and know we all care and know this is a difficult time, but remember there is also lots of hope for many years of loving your children. 

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    Thank you. I really need the support lately. I'm trying really hard to stay positive. I beat it once and I'll do it again!!

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2013

    GrammyR, I've read in several of your posts that you're of the opinion that cancer ALWAYS recurs.  Am I reading this correctly?  If so, how do you explain the breast cancer survivors who go on to live long, cancer-free lives?

    My mother will turn 90 next February, cancer-free, after having bilateral mastectomies--one in her 60's, one in her 70's.  

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  • dltnhm
    dltnhm Member Posts: 873
    edited August 2013

    GrammyR,



    I have read the same and wonder just as SBelizabeth.



    I'm so sorry that you have recurred with mets.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    Beth,

    I'm very very sorry to hear you got some bad news. 

    Have you ever had a Caris report done on your tumor? If not, please try to get one done. Find an onc who will order one. IF you have a mutation on the PIK3CA gene (about 30% of B.C. patients do) you need to know about it because Herceptin tends to fail on patients with the PIK3CA mutation UNLESS they take Everolimus at the same time as Herceptin. The Everolimus helps the Herceptin to work - it affects the pathways in some particular way. Everolimus is also known as Affinitor. Scientists have figured this out fairly recently - though it's still a bit controversial. It probably explains why some people fail on Herceptin. I am on Herceptin and Everolimus because I have the gene mutation.

    There are great docs in the Philly area. (Personally I wouldn't go anywhere near Cancer Treatment Centers of America - but that's just me.)

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    I've never heard of a caris report. I just read about it, and it sound like something that could definitely benefit me. Does insurance usually cover it, because mine won't even pay for a damned pet scan. :/

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited August 2013

    Hi Beth, I don't usually read the stage III threads but something told me I needed to read this one right now.......and I did.  I'm so sorry that you are faced with a stage IV dx......it really is scary........but take heart, bone mets are the easier ones to get a handle on and has been stated before, you can indeed live a long life with them.

    If you feel up to it, have a read of the Bone Mets thread in the Stage IV forum as I'm sure you will be encouraged from it and feel free to join in, you will be welcomed with open arms.

    Love n hugs.   Chrissy

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    ChrissyB, you are the best. Always. V

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  • BethCon1
    BethCon1 Member Posts: 132
    edited August 2013

    Thank you! I could use the encouragement, I'll go check out that thread. :)

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    Insurance covered my Caris report. I guess it varies from insurance policy to insurance policy.

    Listen, now is the time to start fighting for what you want/need. Don't stop searching until you find a doc you feel is fighting for you. All of us who are dealing with this cancer stuff need to feel like our docs are really in our corner.

    Have you been to University of Pennslvania? Or Fox Chase?

    Any chance you could relocate to Texas? I have a GREAT onc here. He fought for and got me all the things I did not get first time around in Boston.

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  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited August 2013

    Hi Barb,

    Long time no see.  Sorry to hear you've been stressed lately.  It sounds like you are OK though.  I'm stressing right now myself about some significant pain I've been having under the arm and the nodes are pepple like and sore.  I HATE THIS SHIT (opps, sorry girls)!  SOOOO, off to the doc soon for a look see. 

    Hope you are doing well and can put this behind you.

    Love,

    Sharon

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  • mamabee
    mamabee Member Posts: 546
    edited August 2013

    BethCon, I'm so sorry your cancer has come back. I know you're getting lots of good advice here so I hope you won't mind me throwing in my two cents. If you're close enough to go to Philly, are you also close enough to go to Baltimore? My mother-in-law was diagnosed stage 4 with bone mets and went to Johns Hopkins after getting disillusioned with her local doctors. She lived for almost 15 years with bone mets thanks to her treatment at Hopkins - as someone above mentioned they treat it like a manageable chronic condition. I'll be thinking about you - please let us know how you're doing.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020

    Oh and one more thing. Start looking right now for a clinical trial involving one of the breast cancer vaccines -- AE37 or E75 are the two main ones I think. Check clinicaltrials.gov. There are some great trials going on and I know for a fact that the researchers who are involved in the vaccines are extremely excited about the progress being made. There are reports of people going into remission and staying there. But it seems to work best on those people who have had the least amount of chemo. So it might be a good idea to look into it right away, before you get too much other treatment. (Not that you'll go on  chemo right away for a single bone met.)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2013

    BethCon~~I have a friend who is 11 years out with bone mets. To look at her, you would never guess she has ever been sick a day in her life. She has great attitude and incredible faith in God. I think those are two very important elements to live a long, happy, life.



    Blessings

    Paula

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  • IrishTwin
    IrishTwin Member Posts: 50
    edited August 2013

    Shanagal, I think you should get the rib pain checked out too.  It could be nothing but a scan won't hurt. I am back here after 5 years off because my sister was sent for an x-ray in July b/c she had left rib pain for 6 weeks that they thought might be a bruised rib. The ribs looked OK on the x-ray but the left lung looked like a recovering pneumonia. She had a CT scan and Friday told us there was an area of dense consolidation in her lung and an enlarged mediastinal lymph node.  She is getting a bone scan Tuesday and we're waiting for the biopsy dates for lung and lymph node.  She had a dry cough since last November, so hopefully without any other symptoms rib pain is just a bruised rib.

    We're bummed but hoping for the best.  Meet with the doctor Sept 18th.

    BethCon, I am really sorry about your news, and really happy to see the posts that bone mets don't have to be so bad.  

    Does anyone know anything that could be hopeful about lung mets that I could tell my sister? Or about dense consolidation that turns out to be nothing? We haven't looked for info because we're afraid :(

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  • Liz52
    Liz52 Member Posts: 3
    edited August 2013

    Hi Ninja,

    I have a cough frequently, also. My oncologist had it checked out and it turned out that I have some scar tissue in my lungs as a result of the radiation. That causes the cough. She says that this is pretty common. It may or may not go away. I'm on Arimidex , too, but I don't think that has anything to do with it.

    Liz

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  • solala
    solala Member Posts: 23
    edited September 2013

    Hello Shanagal,

    I am new on this site and kind of desperate since they diagnosed knee mets about 3 weeks ago. I had BC 6 years ago and thought it was all over ...

    My doctors say it is extremely rare to have only mets in the knee - they can't believe it; but the petscan doesn't show anything else (they "see" something so small they can't tell whether it is arthristis or something like that).

    I start rads next week and am on tamoxifen since 10 days.

    You mention you had your knee removed? Did you only had mets in your knee? Can you give more info on that?

    I would greatly appreciate!

    Thank you so much in advance,

    S

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  • BethCon1
    BethCon1 Member Posts: 132
    edited September 2013

    I haven't checked in here for awhile. Update is that the cancer is also in my liver. I just completed radiation to my L4 which the cancer fractured. I have 3 other spots in my spine as well. My spine biopsy came back as estrogen+ only and my liver cameback as estrogen+ abd half the cells stained slightly for her2+and the other half nagative. :/

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  • Momine
    Momine Member Posts: 7,859
    edited September 2013

    Beth, that bites and I am sorry you are dealing with this.

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