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Worried about rib pain being mets

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  • ShelMel
    ShelMel Member Posts: 20
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    Thank you so much, Leah and JoAnn. I really do appreciate the support and love and prayers.

    I'm still in shock today and so very tired. I think the stress has worn me out. I know I'm going to have to deal with the emotions soon but for weird reason they're just not hitting me yet.

    I love what your oncologist said, JoAnn! :)

    Leah, I've been reading the Mets board for the last day. Just not quite ready to post there yet. I have been in awe at the amazing spirit and support that is over there.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    SHell, the shock is to protect you from reality right now. There is no reason for you to accept anything until it is written in black and white. My surgeon showed me the bottom line of my pathology, didn't even say the words out loud as he somehow knew it was better for me to see them printed out. Right now you're not in denial, you're just in protective mode. 

  • codavis
    codavis Member Posts: 48
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    A week ago I noticed an area just below my right breast (implant really) that felt like a bruised rib. I've had lots of 'tender' spots in the two years since my exchange surgery, and a year ago I even had a bone scan because I had a spot on the right side of my ribs that was very tender. The scan was clear, and my breast surgeon said that the aches and pains were all part of the healing process from the mastectomy and reconstruction, and that eventually they would resolve.

    The tender spot below my breast is still there, and sometimes it hurts when I raise my arm, move a certain way or when I roll over in my sleep. The tender spots on my right side are also still there, and my sternum has been tender to the touch for quite a while. Also, whereas before I would feel pain when I pushed on certain spots, for the last week I've been feeling pain (mostly around the right, cancer side) spontaneously. Of course I'm worried, but since the pain is so similar to pain I've had for so long, I wonder if it's anything.

    Does this sound familiar?

  • barbe1958
    barbe1958 Member Posts: 7,605
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    codavis, you know and I know, and I know that you know, that you don`t know what it is until you get it checked. If a pain lasts for more than 2 weeks, we are supposed to announce it to our docs. It could be necrotic tissue (dead flesh) or encapsulation or anything benign. But it could also be new cancer. Get it checked out sweetie and let us know.

  • codavis
    codavis Member Posts: 48
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    barbe1958,

    Thanks for your response. I know. I know. But sometimes it helps to say things out loud--so to speak.

    I called my breast surgeon's office on Monday and the nurse suggested that I make an appointment for next week on Thursday. That way if it clears up, I can cancel, or, if it persists and I'm worried, i can keep the appointment. Sounds like a reasonable idea to me.

    She called me back this morning. She had left a note for my doctor letting him know that she'd scheduled an appointment and describing my issue. He asked her to schedule a bone scan before next Thursday.

    Ugh. In a way I'm glad because I was thinking that if I saw him on Thursday, and he thought I should get a scan, I'd likely have to wait till the week just before Christmas to have it done, and then wait, wait, wait for the results. On the other hand, as you said, you don't know till you know.

    The scan is scheduled for Friday, at noon.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    codavis, that is GREAT news!!! You will get a VERY fast answer. That is very proactive thinking on your doctors behalf. Otherwise hours are shortened around Christmas and you`d be dragging this into next year. This way you can get the all-clear and start the new year off with a clean slate!! PLEASE keep us updated. You are in my prayers.

  • codavis
    codavis Member Posts: 48
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    Thank you. I'm nervous about the scan, but glad I'm having it.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Of course you are nervous!! They are looking for more cancer! That is what surprises me when women get a mammo and then are shocked that they find cancer. What did you think the mammo was looking for????? The thing to keep cool about is the scan can show areas of arthritis and old injury. I light up like a Christmas tree and yet don`t have mets. Go figure!

  • codavis
    codavis Member Posts: 48
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    Good point. I guess most of us don't think of it that way. More likely we think we're having scans to rule out cancer. Which, I guess, is really the same as looking for cancer, but probably more of a 'glass half full' mentality.

    I waffle between wanting the bone scan NOW and thinking it's premature. After all, it was clean a year ago, and my cancer wan't ultra aggressive. But I still have the tender spots around my rib cage and sternum, and last night my daughter was giving me a back rub and pushed on a couple of tender spots and I nearly jumped out of my skin. Poor thing--she couldn't figure out what she'd done.

    Thank you for your responses--I've not told anyone about this. Not even my husband. I just feel like why worry him if it's a side effect of arimidex or something that's not cancer-related. He's been through enough. So I appreciate knowing that someone knows what I'm going through.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Hmmm, you`ve made me think about something else now. Have you considered LE? I have sore spots on my back that feel like there should be a bruise or something there but there`s nothing. Turned out to be LE!!!!

  • codavis
    codavis Member Posts: 48
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    It's possible. What about the front ribs just below my implant? That doesn't really feel swollen, but does feel bruised. Does LE affect the area below the breast?

  • Rocket
    Rocket Member Posts: 910
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    I hav constant rib pain on my cancer side. I didn't have recon after my bi-lateral mx three years ago, and I did have rads and chemo, but the painful ribs have never changed and I had the pain before I had rads come to think of it. I have had four bone scans and they have all come out clean so far. I'm hoping the same for you.

  • Rocket
    Rocket Member Posts: 910
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    Forgot to add that I have truncal LE and my back on that side hurts as well.

  • julz4
    julz4 Member Posts: 1,373
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    Hi Barbe I have been reading along for weeks.  I'm not worried about my bones as any aches & pains I have had for years off & on.  My ? is how many had any breast pain or achyness BEFORE they were DX.  It is what led me to get my DX.  I went to the RAD onc last month & he says you (ME) were told that shooting pains was a side effect that could be permanent of the Radiation.  But what I explained to him was 3 different types of pain.  One in which I am sure is from the Radiation but the other 2 feel a lot like I was having before my surgery & what led me to be DX.  I go for my first Mammo since surgery next week.  I know my Breast Surgeon will listen to me.  As you can read in my signature line I had mostly DCIS but with micro invasion.  It's also Triple Neg bc which is more likely to reoccur within the first 3 years & Metastic at that.  I had 33 rounds of RADS & that's all.  Also the RADS were just at the 5 weeks mark out from surgery.  My whole team thinks I have this whole thing licked, done deal, gone!  But I'm not convinced yet!  I know as the years pass & I get closer to that 3 year mark I might be more inclined to agree with them.  But they really don't have much info out there on us "GREY AREA" girls.  In fact I don't think many have caught TNBC as early as I.  It also makes me go mmmmm when I think how large my turmor ended up with only micro invasive & no node involvement.  Does that mean I have a less aggressive form? Even though it only showed 9mm on my mammo.  My yearly mammo was clear only 7 months before!  Oh well things that make me go mmmmm.  Next week hopefully I will have clear answers!

  • codavis
    codavis Member Posts: 48
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    Today is not my day. I showed up for the scan, and my name wasn't on the list! I thought I might have gone to the wrong office--chemo brain and all. But it turns out they made the appt for next Friday, Dec 14, the day after I see my doctor!!!! I wasted 1 1/2 hours going over there and back, and didn't even get to have a scan.

    They re-scheduled for Monday afternoon. It will be a long weekend, and even longer between now and the time I see my doctor next Thursday. I hate this @%$@ disease.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Oh crap codavis!!!!

    Julz, DCIS can`t be rated for the HER2 receptor, so how can you be triple negative? If you had ANY IDC then that trumps the DCIS and your  status should change to say IDC and forget the DCIS. DCIS is NOT invasive and never will be. IDC is DCIS on hormones...literally!! DCIS will ALWAYS stay in the ducts and never ever come out of them. The second they do, it`s IDC. But, again, they can`t be HER2 rated. Unless something new has happened, but that`s why your`s couldn`t be done! Surely with 8 cm of tumour they would have had enough tissue to rate it. So if you have invasive cancer, drop the DCIS from your status line. It`s too confusing for old people like me....!! On the other hand, micromets do NOT count as IDC or invasive. For instance, I had two nodes mashed together with micromets. That is a VERY bad sign of systemic invasion!!! But, because it was ònly`micromets, it didn`t count as nodal occurrence. See? Frustrating, eh????

  • Shrek4
    Shrek4 Member Posts: 519
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  • barbe1958
    barbe1958 Member Posts: 7,605
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    I used to have a ridge that sat where my under-wire bra rubbed across the top of my ribcage. That ridge built up over 37 years of wearing a 38D or larger bra!!!! After my mast the ridge was very obvious (known as a fat-ridge) but now it is breaking down with massage. So yes, I had breast and rib pain before cancer.

  • julz4
    julz4 Member Posts: 1,373
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    Codavis oh how the waiting is such a pain! But worse is traveling such a distance & then having it be the wrong day! I'm just glad they are getting you in before your appt. With the Dr.



    Barbe they really really tried to get the HER2 but it was just too small. Also even if it did come back positive I was told that my invasive part was still too small to do Chemo. They would of considered Chemo when my invasive part was 3mm or larger. My tumor was 2.8 cm. Oh well it is what it is & I will just have to wait.

  • codavis
    codavis Member Posts: 48
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    I never had any pain that I would associate with my ribs, breast or sternum before my diagnosis and surgeries. Of course, as we all know, now that I've been through the year of diagnosis, surgery and treatment, I notice every single, minor or major, ache, twinge, or tickle. As others have said, it's the new me.

    I hope you all have a great weekend! I'm going to watch my fifteen year old in her very first high school gymnastics competition, and my husband will go watch our 11 year old and her soccer team in their fourth game of the City Soccer Tournament. They are two wins away from the final! I'm sorry to miss it, but can't be in two places at once. Then I'm going to concentrate on holiday cheer.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Julz, my point was that DCIS does not have an HER2 receptor. So you can`t be triple negative. I wasn`t talking about chemo.

    codavis, don`t we stretch ourselves so thin with kids of outside activities!! But we do love it!

  • julz4
    julz4 Member Posts: 1,373
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    Barb researchers are actively doing studies right now on Her2 in Pure DCIS. As it's the belief that Her2 positive DCIS could be a link to it becoming invasive. They were gonna test my DCIS for this until they found it had an invasive component thus making not "pure" DCIS. There is a correct Trial in the US for Pure DCIS where they will give 2 or 4 rounds of Chemo drug they use for it. To see if helps in reoccurances. My Rad Onc wanted me to participate until he found out I didn't qualify for the study. This Trial just started maybe 8 months ago here in the US. But when they found the invasive & it was too small to test properly & combined with my Heart issues as they wouldn't use the drugs on such a small tumor. They stopped the testing. Also if I remember correctly about 50% of DCIS is Her2+. But when it starts to become invasive a lot of times in ER & PR negative Tumors the Her2 receptors shut off or stop overexspessing. That is why they are let to believe my Tumor is TNBC. At least this is how it was told to me by my Med Onc & other Dr's who also do clinical Trials & research papers. As long as I am remembering all this correctly & didn't forget a step or 2 ! ; )

  • jelson
    jelson Member Posts: 622
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     I just want to correct an impression that DCIS cannot be tested for Her 2 receptor , it can, but it is not done routinely because they don't know how to interpret it yet or what if any treatment to provide if it is positive. There is a clinical trial which I was offered in 2009 and refused and which is the one I think Julz4 is talking about. It is now a stage 3 clinical trial?

    http://www.cancer.gov/clinicaltrials/search/view?cdrid=615085&version=HealthProfessional&protocolsearchid=11175929

    It necessitates the DCIS tissue sample from a lumpectomy being tested for Her 2 receptor at a central lab, those whose tissue tests positive then can participate in the trial where by you are assigned to a group who will get 3? Herceptin treatments during radiation or a group who won't get them during their radiation and then both groups are followed. For me the testing of my tissue would have significantly delayed the start of my radiation and would have necessitated a change in radiation oncologist, and I therefore wasn't interested.

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Thanks for the update. So why aren't they testing regularily for HER2 yet???? If herceptin would help even ONE woman, then let them use it!! Why do they need trials for a proven drug? If it helps for IDC what the heck difference would DCIS make? DCIS becomes IDC so it's all the same thing. Or, are they afraid of the possibility of heart damage with the Herceptin to DCIS patients? Cured the cancer, but killed the heart...sigh.

  • beesie.is.out-of-office
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    Barbe, Herceptin has not been proven to have any benefits for women who have DCIS. Herceptin's most significant benefit is systemic - it reduces the risk of mets.  Women with DCIS don't have a risk of mets (at least not unless they have a local recurrence that is invasive and no longer DCIS).  So it's unclear as to what benefit Herceptin would have for DCIS patients.  And yes, the other issue is potential heart damage and other side effects. Herceptin is a heavy duty drug, with the risk of some very serious side effects.  DCIS is a pre-invasive cancer; if it is adequately treated (i.e. fully removed and/or killed off), it is the only breast cancer that can be considered "cured".  Even considering recurrences that develop into invasive cancer, the long-term survival rate for DCIS is about 98%.  

    So far, the studies on HER2+ DCIS have not come to any definitive conclusions as to whether HER2+ DCIS is more aggressive, more likely to evolve to become IDC or become IDC within a shorter period of time, or possibly become a more aggressive IDC.  None of that is known.  Some studies have indicated that HER2+ status might be a sign of aggressiveness in DCIS, but those studies have been small and there have been many other studies that have suggested that there is no difference between HER2+ DCIS and HER2- DCIS.  So whether there is even a need for a drug like Herceptin has not yet been clear identified.

    There is also no information available yet on whether or not Herceptin would be effective at reducing even local (in the breast) recurrence rates for DCIS.  

    Those are the reasons why Herceptin is not approved for DCIS patients and why at this time, many DCIS patients aren't tested for HER2 status.  

    There are two clinical trials of Herceptin with DCIS patients.  One is complete; the results are posted but no summary conclusions have been posted. In that trial, women were given one dose of Herceptin 21 days prior to surgery.  The other trial is ongoing. This one involves two doses of Herceptin given over a four week period in conjunction with radiation treatments.  So the protocol that's being tested for Herceptin with DCIS patients is completely different than the Herceptin protocol that's in use for HER2+ positive invasive cancer patients.  From a benefit vs. risk standpoint, there is simply no logic to giving women with HER2+ DCIS the same doses of Herceptin that invasive cancer patients get. It would be irresponsible to expose DCIS patients to that level of risk when there is so little risk from the DCIS itself. 

    I was diagnosed 7 years ago.  I had a microinvasion of IDC along with a lot of DCIS.  I did not get any HER2 results.  At that time, HER2 testing wasn't done on DCIS and probably was only rarely done on microinvasions.  If I had been tested, the odds are reasonably good that at least my DCIS might have been HER2+... that's because about 40% of DCIS is HER2+.  But only about 20% of IDC is HER2+.  And that's another mystery. No one knows why it is that more cases of DCIS are HER2+. With all these unanswered questions and with no differences in treatment between HER2- and HER2+ DCIS and DCIS-Mi, frankly I'm glad that I don't know if I was HER2+ or HER2-. The way I see it, if I was HER2+, it would just be something else to worry about that I can't do anything about. However since I did allow my tissue to be tested for research, I wouldn't be surprised to find that my HER2 status is in my files somewhere, but I'm happy not knowing. 

  • beesie.is.out-of-office
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    Back to the topic of the thread.... I have implant reconstruction on my right side, and I get occasional rib pain.  I had it really bad a couple of weeks ago. Because I don't get this pain often, when it happens, I have that momentary panic.  Then I remember that it's happened before.  I believe the pain is due to the fact that the implant presses in against my ribs and I no longer have the soft cushioning of the breast tissue.  The ribs on my right side below and next to my breast are much easier to feel and are just more prominent than the ribs on my left side, because there is no breast tissue on my right side.  So I think that causes the ribs to bruise more easily, possibly from the implant pressing against them, or possibly because of something I did.  

    I've gotten this pain a few times over the 6 1/2 years I've had the implant.  When it happens, I take care to protect and cushion that area of my ribs.  I make sure that I wear a bra with no hard edges, or I just wear a cami.  After about a week, the pain always goes away.  

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Thanks Beesie, I was wondering why Herceptin was being brought up for DCIS. Julz...did you READ Beesie's post!!! Don't get yourself into a corner with other health issues if you can avoid it!

    I had a breast reduction years ago (before my masts, obviously) and was told by the breast surgeon to NEVER, EVER wear an underwire bra again! But with new 42D's (smaller, yippee!!) how the heck was I to maintain a professional profile without my "industrial" strength bras?? I tried work-out bras as they are more structured, but they were just too hot and confining for every-day wear. I went back to underwire about a year after surgery. I just needed the support. Now I am ever so happy to avoid bras all the time!

    Because it hasn't been mentioned for a number of threads and for those just lurking, remember to check out Costochondritis. It is a form of arthritis and is very, very painful. I can vouch for that! It accounts for a lot of rib pains and as we get older we are more prone to arthritis.

  • beesie.is.out-of-office
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    Barbe, I don't know much about Costochondritis.  I've looked it up and what I don't understand is why most of the websites refer specifically to left side ribs. The description of the pain sounds a lot like what I get, but mine is on the right side, which is my MX/reconstruction side. I do have arthritis that flares up occasionally - and come to think of it, usually the flare ups are on my right side.  Over the past few years I've had my wrist, my elbow, my thumb, my baby finger and most often (and currently), my neck.  Interesting....

    As for HER2+ DCIS, I really wish that a large definitive study would come out so that we'd get more answers. So many women who have DCIS find out that they are HER2+ and they panic because of that.  It's logical, because we all know that HER2+ invasive cancer is more aggressive so why wouldn't HER2+ DCIS be more aggressive too? But the studies on DCIS are all over the map - a couple of small studies have even suggested that HER2+ DCIS might be less aggressive.  Now that doesn't seem logical, except for the fact that there's no explanation as to why more DCIS is HER2+. It is known that most of the time (95%+), HER2 status doesn't change as a cancer evolves from DCIS to IDC.  So if 40% of DCIS is HER2+ (and lots of studies support that), and if HER2+ DCIS is more aggressive, wouldn't it make sense then that a higher percentage of IDC would be HER2+, maybe 50% or 60%?  But only 20% is, which seems to suggest that HER2+ DCIS evolves to become IDC less often that HER2- DCIS. It's quite the mystery. 

  • barbe1958
    barbe1958 Member Posts: 7,605
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    Hmm, I'd never read the "left-side" thing so I did a Google search. I normally use NIH but I see Mayo has mentioned left side. That's the only time I've seen that come up and I wonder what their logic is??

    I, also, don't need to be "pressed on" to feel the pain. My pain is spontaneous (not motion or position exacerbated) and literally takes my breath away. It can be minutes before I can take a deep breath. Very, very scary!!

  • codavis
    codavis Member Posts: 48
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    I had my bone scan on Monday morning and got the results yesterday. Low liklihood of mets, which is what it was a year ago. I guess the pain I'm having isn't bone mets. Not sure what it is, but I see my doctor tomorrow, and will be interested to hear what he has to say. I'm really glad for the scan, but sort of perplexed about the cause.