If you are not Stage IV but have questions, you may post here
Comments
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If this time I have a node positive, is that mean I have stage IV?
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jjl...having one or even more positive lymph nodes does not necessarily make you stage IV. To be stage IV/metastatic, the cancer needs to have left your breast area and shown up somewhere else in your body...usually bones, liver, lungs, or brain. Positive nodes could be a signal for your MO to start scanning you for signs of metastases, but it is also possible that your nodes did their job and kept the cancer from spreading further. Good luck!
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I had an MRI, CT, and PET scan a yr ago and all fine. I do have hip pain when I sleep. I like to stay in denial forever, but I know that doesn't work. I wake up and have to roll to the other side. It doesn't seem to bother me much in the day. Should I be concerned? I stayed at my daughters for a week and slept in my granddaughters bed and had the same issue. I was hoping it was just my old mattress. I hate to think of bone mets, but it is on my mind. Would I have the pain in the daytime or could it be just the pressure of laying on my side. Any input would be helpful.
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Diannarose, if your pain is waking you up then its time to get it checked. It may only be arthritis but obviously you are concerned enough to beg the question. Good luck!
Love n hugs. Chrissy0 -
Thanks Chrissy.
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Nanka -
First, I have asthma...but I did have increased shortness of breath with mets. But, mine kind of snuck up on me over months. Like, if I spoke on the phone for too long, or if I laughed too much, or something like that. I always just thought it was my asthma, and would reach for my inhaler. Only the inhaler wouldn't help. I never, ever put two and two together. So stupid, right - but I guess I was in denial.
But there a million reasons for shortness of breath...not just cancer. I would definitely go to a pulmonoligist at least to get your breathing checked out, and to get an xray. That way, you can put your mind at ease once and for all. Also...there is adult onset asthma. You may have that, and not even know it.
Take Care
LL
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My doc told me that tumor markers do not work for me although he still insists on doing them. He did say that for some people they are very reliable so I guess the line would be reliable for some people all the time not some people some of the time.
Hope that makes sense.
Love n hugs. Chrissy0 -
I believe that one of the reasons is that our blood cells die and regenerate or renew every 42 days. Therefore tumour markers cannot be accurate as the tumour markers also includes blood cells that are over a month old as well as new ones. In my case, when I started taking Xeloda, my tumour markers still went up after the first round (3 weeks), but after the second round (6 weeks which means that I had completely new blood cells from the start of taking Xeloda), my tumour markers started going down.
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Hi...thanks for your replies regarding shortness of breath. I also have asthma but it's pretty controlled. This kind of feels like a different shortness of breath (no weezing). I did get a chest x-ray done and it was clear. I saw a chiro and he feels that one of my ribs was out of place. It seems a little better since the adjustment but still there. LizLemon, I guess the tamoxifen didn't work for you? I'm hearing that more and more. I thought that was my lifesaver. Now I'm not so sure. Thanks for your input.
Michelle
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Lizlemon, how long have you been on tamoxifen?
At your initial dx were strongly ER+?
I'm taking tamoxifen since Dec/12, along with blood thinners injection as I was dx with PE at the same time as BC.
I'm trying to decide if it would be safer to have oopheroctomy and switch to AIs, (I could ditch blood thinner shots!) instead of staying on Tamoxifen. It is just that I'm not looking forward another surgery and would like to postpone it for later...
Maggs0 -
I don't fully understand about the tumor markers. I have had the ca27 29 twice, the first time in Nov 2012 it was 20.40. The second one was Feb 2013 and it was 21.80. Can anyone explain to me what these numbers mean? I've asked my mo and my dd who is a nurse but still don't know what they mean. They say the numbers are good, but I want to know what makes them good. I feel like I have chemo brain when it comes to this issue. Any help will be gratefully appreciated. Thanks, Cynthia
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Cynthia I hope this helps, it's taken from About.com Breast Cancer
Cancer antigen 27.29 (CA 27.29) is a blood test that is given specifically for breast cancer. The antigen CA 27.29 is found in the blood of women who have been diagnosed with breast cancer. If your CA 27.29 levels rise, it may indicate that your cancer is progressing or spreading. One version of this test is called the "Truquant BR Radioimmunoassay test."
CA 27.29 is a mucus-containing protein that is produced by the MUC-1 gene. Breast cancer cells will shed copies of the CA 27.29 protein in to your bloodstream. During treatment, your levels of CA 27.29 may fall, indicating that your treatment is effectively killing the cancer. If your CA 27.29 levels rise, your cancer may be progressing and it may be necessary to adjust your treatments accordingly.
The normal range is under 38U/ml so yours are in normal range.
Hope this helps.
Love n hugs. Chrissy
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Maggs and Nanka -
I was on Tamoxifen beginning 13 years ago for 5 years. I was cancer free for 12.5 years. Then boom - mets. I started taking Tamoxifen in October of 2012, when diagnosed with mets, having not hit menopause yet (my periods never stopped, even through the original chemo). Though my onc now says that taking my ovaries out isn't "necessary", I'm not too sure about that. I never wanted to do it before, because, honestly, after being NED for 12.5 years, I thought I was fine, and no need to do yet another awful surgery.
The other thing is, I'm scared to death of the menopause symptoms. Weight gain, vaginal dryness, forgetfulness, etc. But now I'm considering it, because now I'm having major fibroid problems on top of everything else, causing lots of pain. So, I'm beginning to think that perhaps it would be smart to have th ovaries out - get rid of all the estrogen that I can to (hopefully) improve my chances.
I do feel that the Tamoxifen is helping me now. I had the "classic" tumor flare that one gets when starting Tamoxifen, which basically means you suddenly feel a lot more pain as the Tamoxifen is starving the tumors of estrogen.
Also, I wasn't wheezy. But I did have a nasty, dry, unproductive cough, that I just ignored. For months. Once I started Tamoxifen and chemo, that cough went away.
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Thank you chrissyb, I think I understand it a little better now.
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LizLemon,
It sounds like tamoxifen is doing its job by reducing/killing cancer cells.
I'm happy to hear that your bothersome symptom (cough) is gone.
I still don't understand how was it possible that your dr allowed for you to have regular periods with Tamoxifen??? That's a lot of estrogen!
I stopped menstruating with the beginning of chemo and hopefully my periods will not return. I was told that otherwise they will be giving me drugs to stop it or surgery to remove ovaries. My recent blood test showed that I maybe in menopause, although onc is not sure if that will be permanent state, so she wouldn't give me AIs.
As for menopausal symptoms - it's not to bad! I haven't gained any weight, (I actually lost over 25lb after surgery and while on chemo, but I did a lot of walking), keeping it between 125-130 lb.
I also take Metformin off label and although I haven't lost any more weight while on it - it is possible that it helps me keep my weight stable.
I also had CYP2D6 test done to see how my liver metabolizes tamoxifen, I will be meeting with the specialist on Friday. This will help me decide whether I'm going to stay on Tamoxifen longer or whether I should seriously speed up oopheroctomy and switch to AIs. I have a 14 years old daughter and she wants me to be around to help her with her children one day. So I have no choice but fight that ugly BC.
It is interesting how different cancer centers have different approach and recommendations. But I've learned that it is important to follow own intuition as well.
Hugs,
Maggs0 -
chickadee and deyla - Just reporting in. I started Xeloda/Ixempra on Tuesday. Today I have mild headache, mild nausea, abdominal pain and cramps, muscle pain, joint pain. It hurts to sit or lie down. Last night I took an oxycodone and it didn't resolve the pain and I also had sweats and shakes. Fun stuff! Hopefully only a few more days of this.
Phyllis
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Hi ladies,
Wanted to stop by and post an update. My PET scan came back clear, but I'm still experiencing daily, nonstop arm pain (from shoulder on down to wrist/hand, with forearm being site of worst pain). Orthopedist says I have decent range of motion in my shoulder, so he's stumped and doesn't want to order an MRI. Going to see lymphedema specialist Monday. Was supposed to see her a few weeks ago, but she had to cancel and reschedule.
I now have three little nodules just below my elbow, on the top of my forearm, right where I have the most pain. In same area there are dry, superficial tiny bumps running in a direct line down the arm. Odd. Still no noticible swelling. Hopefully the lymphedema specialist will provide insight. This pain is tiresome.
Warm hugs! And thanks for sharing your knowledge with me. If anyone has experienced something similar to what I'm describing, give me a shout. I'm wondering if it could be a variant of lymphangitis. If not that or lymphedema, I'm guessing it's some sort of tendonitis. [I'll be sure to search the lymphedema threads, too.
]Anne Marie
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I am worried about bone mets. I was thinking I had a work related injury to my neck and shoulder. I have done physical therapy for 8 months now with no relief. I seem to have more pain when not moving. The pain is in my neck, shoulder and ribs. I have noticed in the last couple months that my hips now hurt. I am not taking any medication. I have had an X-ray of my shoulder and neck, my neck showed degeneration and shoulder showed nothing. Would just like feed back before I start asking for thing like bone scans. Thanks
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Janie,
Apart from recommending that you see your oncologist, I wanted to let you know that my arm also feels better with movement. When it's still, bent, or even just hanging, it hurts. But when I'm gardening, doing heavy work, it's okay; I don't feel the pain. In my case, a PET scan ruled out bone mets. It's definitely a relief to know, and for that reason I recommend getting a scan.
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Janie if your pain is not alleviated by Physio and seems to be getting worse I would suggest you speak to your doc about getting a bit more detailed scan rather than an X-ray particularly for you neck. Your pain may be nerve impingement which doesn't show on X-ray.
Good luck.
AnneMarie sorry you didn't get any answers from your pet but at least you know it's not mets so that's a good thing. It is possible that what you are feeling is lymphadema related.
Love n hugs. Chrissy0 -
AnneMarie, it's possible you have something called "cording". I had it once -- hurt like the devil and they gave me stretching exercises.
If you stretch out your arm, can you see the tendon look like a cord? The nodules you mention should related -- in my case I could see the entire "cord' running down my arm. My onc had no idea about this. I was diagnosed, so to speak, by a physical therapist who specializes in lymphadema.
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I just got my biopsy result. Metastatic adenocarcinoma. Scheduled bone scan and ct scan next Tuesday. My onco put me on Adriamycin follow week. She said I'm the rare case she ever saw. lots mistakes in the process. She wants bring my case to tumor board, to warning all the docs, that shouldn't happen to another patient.I had 3 surgeries. And chemo. My first surgeon didn't want do mastectomy even I requested. But he didn't get clean margin, then I request mastectomy again, he refused, we did lumpectomy again, still not clean margin, then I request again, he sent me to onco. Because somehow, he must didn't want do mastectomy. Ok, I changed another surgeon. She did mastectomy but didn't take anymore lymph node, even that already showed up borderline....
I'm so scared if cancer speared to another organ. I want ask is any symptom I should worry? I have a 15years old son and I am the only child in my family. My parents already around 70's. they all need me..1 -
Hi Jill, I'm so sorry that you have this diagnosis but welcome. It's hard to say just what symptoms to look for as a lot of times there are no symptoms to give warning that something is going on. The best thing is, that you are monitored by your medical team and remember to tell them of any or all changes that you may notice so if necessary they can be followed up on. Bloods are done regularly to check liver and kidney function. A continuous hacking cough that just won't quit needs to be checked out as well as any heavy pain.
Metastatic breast cancer is a sneaky beast and the only thing that we can do other than our prescribed treatments is to be aware. Please take strength in the knowledge that it is possible to live a long near normal life even though you are Stage IV.
Love n hugs. Chrissy0 -
Thanks Chrissy.
I guess I'm currently not stage IV. And I'm cross my fingers now....
My MO prescribed doxorubicin x4, but I'm her2- neg. there is some research result look likes SE more than effective. I wonder which treatment u got?0 -
Oh, sorry Chrissy. I just saw your bio... I'm sorry u can't handle any treatment. It is hard. I'm terrified about another 4cycle chemo now.
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Jill, do a search and I'm sure you will fin a thread where others are doing the same treatment that you are. It's a good way to get support and encouragement to continue as well as some tips that will help you get through. I understand that chemo is tough but it is not for long and the outcome could be the difference between a really long life and a shortened one........it is worth the effort.
As for myself, please don't worry.......I just have a very tetchy system that doesn't like chemicals.......lol. I'm doing well on Femara so that's a good thing.
Love n hugs. Chrissy0 -
Chrissy what if they elevate during treatment and your scanned from head to toe and they find nothing?
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Netty, when the cancer is dying during treatment it sheds cells which will show up in the marker test and make the numbers rise. This will settle and the numbers will drop again.
Love n hugs. Chrissy0 -
Ignore him. As someone above said, don't feed the troll. Lol
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Hello.
Landed in the ER this weekend with possible blood clot as i coughed up some blood in the prior night and had a little blood in mucus the next day too. I had made a long car ride to Ct to visit friends. So I wasn't at my hospital.
Thankfully cleared and went home after a gamete of test.
However the ER did a chest CatScan. Upon my release they told me the radiologist found a 3mm nodular on my left lung. They said I should request a medical release and have my Dr's review the test.
Tried to not worry all weekend but I did. I poked around the Mets IV site looking at signature i was stunned how many woman were node free/clear but had mets.
Is this common?0
