Bone Mets Thread
Comments
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Exbrnxgrl. "who needs medical school, when breast cancer provides such a great education?" That made me laugh out loud today! And isn't it the truth! Sheesh!!
SonnyB, exbrnxgrl, and Macyhen: Like me, you both found out early on that you were stage iv. And I was also diagnosed stage ii; a PET scan one month later revealed the lumbar and lung lesions and then the upgrade to stage iv. I'm just curious, had you just discovered the lump in your breast? Was it something you "thought" was there and ignored for a short period? I am fascinated that we were all disgnosed at stage ii, only to learn that our cancer had advanced.
Also, I'm interested as to how you "feel" about it. What was your reaction? I have to think that our reaction to learning that outcancer was advanced as we were processing the fact that we had cancer to begin with MUST behandled better than, say, someone who had a earl stage stage cancer, was treated, and then five years later learns that it has not only come back but has mestastasized. Saying it is "easier" is not really the right word, but I'd be interested in hearing your thoughts.
Scorchy
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Scorchy for me I had been having pain in my breast after my mammo in 2011. I told my Pcp and he did a breast exam at every visit. I saw him on 9/19/12 and told him that the breast pain was getting worse he did another exam and still did not feel anything. I had a mammo at the end of July, they called and scheduled another mammo for me on Sept 24 th. At that time they said they saw calsifications and wanted to check, they had me do an ultrasound that same day. The radiologist came in and told me you have cancer. I was devastated my dh was there with me. I had bmx on Oct. 18 th they told me I was cancer free. I went to onc and my dd asked her to do a pet scan, that's when I found out I was stage 4, with mets to my hip. I think I was and still am numb. I feel like I'm in a bad nightmare and can't wake up. It is getting easier for me but I still have trouble excepting th dx,
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I was well aware of my lump for some time. Every year i had a physical which included a breast exam. My lump moved so I was told by more than one doctor that it was just a cyst. Nobody suggested i get a mammogram or anything and I had no reason to believe it could be anything else.
As soon as i turned 40 I got a baseline mammo. i also got an ultrasound due to my dense breasts which came back neg. i told myself, well, it really is nothing! i started getting concerned again a year later so i went to a different doctor and she also told me again its just a cyst. I went and got a second routine mammo at age 41. I again got an ultrasound also due to dense breasts and again was told everything is fine. I knew i had a lump, i knew it was growing but since i was always being told it's nothing by multiple doctors and radiologists I just assumed it was a growing cyst. How was i supposed to know? theres no history of bc in my family. A year later at age 42 I had another office visit (doc says "your cyst is still there!") and another screening mammo and that is when everything started to unravel. It really was a shock to learn how ineffective screening can be. I should have had diagnostic mammos but no doctor thought to order one.
I'm not sure some doctors even understand how ineffective screening is. I was screaming hysterically in the breast surgeon's office and he suggested a PET prior to surgery even though I was assured it was probably curable early stage. That's when they found the bone met but it was probably there for some time.0 -
Barb, in the rib area there are many small muscles and ligaments and it sounds like you have pulled one of them rather than a progression. If you have any anti inflamatories try taking them as well as some magnesium to relax the muscle I think you will get some relief.
I'm glad to hear that you are doing better........wow! on the weight loss due to nausea, I can't believe your doc didn't take on board what you were saying to him. Mmm I think a change would be a good idea so I'm hoping you can find one that listens to what you are saying.
Love n hugs. Chrissy0 -
Scorchy, I found my lump on a Sunday and had a biopsy by Thursday. Surgeon was pretty sure it was cancer right away. I had no thoughts of cancer beforehand but had lots of backaches and hip bone pain. Thought it was getting older (52 now) and arthritis. I really didn't get too upset at the original dx, thought it would be a tough year and then I would move on. The stage IV dx was another story. I really knew nothing and my onc was trying to console me by telling me that she has another lady at 10 yrs out. That totally freaked me as I didn't think that was a long time.
I think I came to acceptance pretty quickly, a couple of weeks. I'm pretty positive about it all (kids are 21 & 23 which helps), it's just hard when talking to DH and realizing our retirement dreams are going to happen.
Sonya
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Hi ladies! Chrissy, I'm so sorry to hear about your Mom :-(
I've been having a lot of back pain, moreso than I've had in the past couple months. I had scans done 12/13 and there were no new spots. They said that the scans look worse but that could mean I'm getting better, lol. I'm in the weird limbo period where we are just watching to see if the Tamoxifen/Lupron/Xgeva combo is doing it's job. Onc wants my ovaries out and all I can think about is "No more surgery!" But hey, a 33 year old doesn't need her ovaries, right?
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Yes, Kasi. If I thought my 58 year old ovaries were producing anything, I'd have them out too! But fortunately, they are all shrilved up lol. I pray you are stable.
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Chrissy,
I just wanted to say that I am so very sorry for the loss of your mom.
Hugs,
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Chrissy, k,i found it. Positive on ER,PR&HER-2 with intensity of 3+ for all. Im done with the chemo. 1st cycle was adriamycin/cytoxan/herceptin ev 2wks x4 2cd cycle was taxol/ herceptin ev 2wks x 4 with neulasta after each chemo and hercep each week,now every three weeks .
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Krayz being triple positive gives you all the AIs as well as Tamoxifen as options for treatment which is a good thing as they are much gentler on your system than chemo. The Taxol/Herceptin combo is standard treatment for Her-2+ and is usually given for twelve months in the early stages but for stage IV I think you can be on it indefinitely.
Hope you are doing well.
Love n hugs. Chrissy0 -
Chrissy, k,i found it. Positive on ER,PR&HER-2 with intensity of 3+ for all. Im done with the chemo. 1st cycle was adriamycin/cytoxan/herceptin ev 2wks x4 2cd cycle was taxol/ herceptin ev 2wks x 4 with neulasta after each chemo and hercep each week,now every three weeks .
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I know that one scan time doesn't work for every case but reading so many of these stories reminds me of my own lumpy breast. Whether is was coincidence or not, I have no idea, but it was my left breast had lots of cysts and the right breast was clear and it was my left breast that had cancer with nothing in the right. Years ago (about 10) I went to the PCP multiple times with complaints of pain and lumps. He would drain the cyst with a needle aspiration and I would be on my way for another year or so. Did 3 of these. This was at the same time my sister was dx'ed and being treated for stage III ILC. She warned me that ILC was detectable by a mammo but I didn't really understand what she was saying. Yes, I really did have cysts, which made it basically impossible for me to do a self-check.
If we (my PCP and me) had put together the warning signs that I understand now, I should have had an MRI back then. Dense breasts - higher risk. Family history - higher risk. Sibling under 50 - higher risk.
Seems like when a lump gets reported the next step (if it escalates at all) is the US. But in my experience that is done in a specific spot and the rest of the breast is ignored. Cysts grow and recede. So it can seem like the lumps are moving but it can just be multiple cysts. I just wish the docs would stop the endless guessing and send the ladies with these problems for an MRI. That would identify where all the current cysts are plus it would probably show any cancer. I would have dx'ed at a much, much lower stage. And if it had been done before the cancer was detectable, at least I would have known where the existing cysts were so I could know what to disregard.
Oh well. I understand that they are working on much better detection methods. Heard a talk about using protein markers which would actually deliver an accurate yes/no blood result of the existence of breast cancer. Unlike the current TMs, it wouldn't detect the "amount" of cancer by giving a numerical result of 40, 250 or 2000. Just yes or no. But if the answer is yes, it is absolute. Then comes the search of where and how much. The researcher said it was at least 3 years out from prime time. I just hope it really does work.0 -
Christy that blood test would certainly be a god send when and if it comes on line. Just imagine the drop of stress levels!
It wouldn't matter to me if it couldn't give a number as the TM tests don't work for me, I just have to go on symptoms and scans so it could get away and I wouldn't know it as again scans are not done as a regular thing only if I am complaining (loudly) about something.0 -
I am guessing TM's don't work for me either. I have never had a result over 34 even when my bone met was most active. Hope this new test is available sooner rather than later.
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3rd chemo today. So far I haven't had too many side effects. I still have all my hair! I have had some bad diarrhea(sp). And a little headache. Hope it stays this way for the next 9 weeks. Hope everyone is okay I really miss you ladies!!!
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I'm glad its going well Macy! Except for the diarhea. Blah.
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My story is I was putting off having a mammo, always found an excuse to do it later. Well I found a lump and then ran to have a mammo. The tech read the mammo immediately and called the pathologist . Pathologist did a needle asspiration and confirmed it was cancer, saw the onc who immediately gave me femera took that for two weeks until I couldn't tolerate it. Then had a few tests, breast mri, and a few scans. Found postive nodes. Onc told me it was invasive lobular cancer (he didn't give me a stage so I googled) and said no chemo for me.They recommended a BMX with TEs so I did that, then rads, After the rads started Tamoxifen 3 months later more scans, got good news no progression on the bone mets and some scarring. Had the implants in Dec 2012. Implants are doing well might have another surgery using some of my abdominal fat to fill in some spots. I have an aunt who was dxed about 11 or 12 yrs ago with stage IV and she is still going strong So now I still feel good and still have all of my hair, I don'tlook sick (except for the circles under my eyes) just limited in lifting anything over 5 pounds but I do cheat on that. It is not easy for me to keep asking DH to take out the trash, carry the laundry downstairs etc, so sometimes I just drag heavy stuff around. DH and I updated our wills and health care directives. Got his 92 yr old mother into assisted living. I am still working and commuting by public transportation. Got a handicap placard for the car and in a few months I will apply for disability. The onc scares me when he asks how my pain is, keeps on asking if I need any pain killers. So far the mets are not bothering me, but hearing Scorchy's story scares the heck out of me. I wonder when the mets will bother me
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Back from my 3rd chemo session feeling pretty good so far. Onc said diarhea was not chemo related. I ate some oranges, she told me that's prob what caused it, no fresh fruit, veggies, undercooked meat, etc. due to the bacteria. Every thing must be cooked. Oh well.
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Hmm. Never got the message about all the food being cooked. Oh well - who knows what SEs it might have helped. Hope the SEs continue to be minimal for you.
Gotta ask, Macy, what is your avatar picture? That pink really stands out!0 -
HY NYC - sounds like you are doing marvelous living with this horrible dx and you've got a great onc. thanks for sharing your story
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Ana I am too embarrassed to tell you what it is. Its kind of disgusting but here goes. It is a picture of my granddaughter inpink tights after a massive #2. It's the only picture I was able to use on this site. I will change it when I figure out how to!! :-)
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Oh Macy!!! I just spat my cup of tea all over the computer laughing my head off!!!! That is a classic!!! Because the pic is slightly out of focus it looks like a work of art!........lol. I'm not offended and hopefully no one else will be either so I'd leave it right where it is........it will give me a giggle each time I see it!.......lol
Love n hugs. Chrissy0 -
Lol chrissy I was hoping some one would see the humor in it. I laugh every time I think about it.
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Macy, I always wondered what that picture was! That's hilarious!!
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LOL, its too cute.
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OMG too funny!! HAHAHAHA :-D
Well I had an onc appt today. Did the tm which I won't have the number til at least Monday, and made appts for a bone scan and ct scan in 3 months. We were all kind of disappointed because last time he said we will do scans in Jan. I'm ok with it but I think my parents, actually I KNOW my parents are anxious to know and just constantly worried. I wish I could put them at ease somehow but I'm their daughter. I think they just can't help it. Hate for them to be so worried. So it was kind of a nothing appt.
Now the important news. 2 hours before my appt my dad was rushed to the ED with a stroke. He's in the ICU right now. I don't know a whole lot about strokes but it started with his arm going numb and he was not talking exactly right. He was with friends at breakfast and his friend said it was poretty bad, sweat pouring off of him and he couldn't move or talk by the time he got him to the urgent care center. They put him in the ambulance and took him to the hosp where I am treated. When I got there he was much better and his arm was weak but he could move it and he was acting like himself except that he was shaking off and on. They were giving him TPA when I got there. My mom told me later that before I showed up at one point he got really blue and started crying. He was so worried about me and also thinks his life will never be the same again, that he won't be able to play guitar again. The doc told me its a tiny clot they could hardly detect and the tpa should break it up. I think since he was already improved by the time I got there he should be be able to make a complete recovery. Lots of people have strokes and later on you can't even tell. His arm is not numb any more and he doesn't have facial droop or anything. His speech is very slightly different, like lazy if I have to put a word to it. And he is very fatigued and has felt very unusually fatigued since sat night. So anyway, please pray for my dad. Sorry for the book but I wanted to give details in case someone is more familiar with strokes and could maybe reassure me that my dear dad will probably come through this ok and hopefully playing his guitar. Thank you and bless you.0 -
HLB, I'm so sorry to hear about your dad! Don't have any info to give you just prayers for both you and your dad.
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Praying for your Dad and the family, Thank God his friends were there to call for help.
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Yes, I'm so glad it was breakfast day because otherwise he would have been home alone because my mom goes to the gym! Those old men sprung into action! His friend Frank came in a bit after I did and said he was his brother to get in, and he NEVER goes to hospitals! Even when his mom was in the hosp. My parents have a lot of friends and are very loved which makes me very happy. Thank you for the prayers. I am sending them up myself to please let him be ok and especially to not be down and sad. I brought him a Sponge Bob ballon thinking he can't help but laugh if he looks at it. I did have him laughing a few times and Frank did too. Frank is always the center of attention and when he left I said " geez you can't even have a stroke without him being the center of attention". He get a big kick out of that!
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Sounds like he was lucky HLB.......immediate treatment is the key to surviving a stroke. I will say an extra prayer for him tonight.
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