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My MO's nurse finally called me yesterday and left a message that they are working on a bone scan and shoulder MRI. I swear the pain almost seemed to vanish at that point, but this morning the shoulder is back to hurting. This makes me scared, but even if it isn't mets will these scans be able to see if there is some other issue causing pain? I'm nervous, I don't know how to live like this, with fear that it could come back. I'm really struggling with this and I feel crazy at times that I'm overreacting to pain. Like it's in my head or I should just deal with it. I have worn out my husband with these fears, he doesn't know what to say....and honestly I wouldn't know what to say either.
It's on my mind daily, some days I can push it aside and go about my stuff....other days not so much. I feel so vulnerable to cancer, there is no active tx now and I'm told how strong, how I "beat it" and now I can go on with my life. If that is true why do I feel like this??
I'm venting..thanks
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Tang! I am going to pm you my cel. You can call me and vent any ol time. These are the fears we are left with. But you ARE taking an anti hormonal, right? and really, even if there was progression, I am beginning to think that it takes a while to get big enough to even see, by the best imaging. If they cant find anything on imaging, and i am hoping that they don't, then maybe you can ask about physical therapy. I was sure I had another golf ball sized node in my pit, but I didn't. But taking out all those nodes and then ME babying that arm & shoulder for way to long really I messed my self up. I have never in my life babied any part of my body. It really helped, my shoulder hasnt hurt like that again. Now if they could only fix my feet! Everyday I feel like I am walking with broken bones. But if it helps you can call me, ok?
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Hi ladies,
I am so scared right now. I have been having severe knee pain for about 6 weeks now that has gotten progressively worse. A month ago I saw an orthopedic who did an X-ray and MRI of my knees and found some fluid but mild arthritis. I started PT 3 weeks ago. Now the pain is excruciating and the PT says it's Unusual for there to be no relief. He suggested I call my MO. I know mets rarely go below the knee, but the pain is horrific. It hurts whe I am sleeping. I walk like I am 90 and I Am 47. I have been on a AI for about a year and had joint pain in the beginning but the pain was not likE this I had an MRI. is it possible for the Cancer to not show up there ? Do I need a bone scan
Tha
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School...I can only go by what I have read. I have seen women that don't develop AI side effects for months or even years. See if your MO will let you take a "drug holiday" for a few weeks. If your pain subsides, there's your answer. Oddly, I had horrible knee pain when I was on a high protein diet.
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SchoolCounselor, it doesn't sound like mets, but if an ortho doc can't help and a short onc-approved break from your A/I (as Jilly suggested) doesn't make a difference, then it might be worth asking for a PET or CT to put your mind at ease. You're absolutely right that knee pain rarely, if ever, is a symptom of mets, and the more likely culprit is the Aromasin. But since an MRI didn't show anything, I'd personally want further imaging, just to be sure you don't have a hairline fracture that was somehow missed in the x-rays and MRI, or that the knee pain isn't referred pain from somewhere else, which can also happen, although it doesn't really sound like it in your case. (((Hugs)))... good luck... and please let us know what you find out. Deanna
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I have a very serious question. I had my last Onc appt. just last week and my liver enzymes etc were good. My Onc. scheduled me for a bone density test. I go tommorow. During my visit with her I showed her a swollen gland on my groin which has since all but disappeared. What has happened 3x since is that at night just before I fall asleep I am getting a severe belly ache. So severe that each night it has kept me up until roughly 3am. Last night was so painful I was on my hands and knees. I tried drinking a bit of baking soda with water to no avail. I Dr. Googled and found it could be a number of things. I quit soda twenty years ago yet had some organic root beer last week. One man on Dr. Google says stopping the soda helped as the pain happened days later much the same as mine. But I am thinking abdominal mets. I had a clean Pet and MRI before my Uni MX in January. They found a shadow on my left rib after a chest xray but then said it was not cancer but an old injury because the PET and MRI showed no mets. Now I am scared. Has anyone experienced this intense belly pain? It radiates up to my bra line.
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Hi Bcky. Two things come to mind but you would need to have your Onc or Dr check it out. If the pain is on the right side it's possible that it is a gallbladder problem. Try as much as possible to avoid fatty foods particularly after 6pm in the evening. It might also be a rumbling appendix which can cause pretty general pain at times - would also be right side though. Lastly, and least likely I think it is possible that it's a mild hernia.
A dr would need to check you out for all those things. Don't forget, sometimes, particularly if you're a bit constipated, you can also get trapped wind a night which can be pretty painful.
I wouldn't know about abdominal Mets but someone else here will have an idea about that. I think it is the least likely cause though.
Good luck and Hugs to you.
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I agree with goodprognosis in that this doesn't sound like mets to me. The kind of excruciating pain you were experiencing, doubling up pain, doesn't happen when mets first presents itself.
You may have some kind of infection, which would explain the swollen lymph nodes. You need to go to a GP or internist and get checked out, asap. Good luck!
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Bcky, I agree with the others. I think it's extremely rare for bc to go to the stomach or anywhere that would give you the type of pain you described as the first indicator that anything is going on, and my guess is it's something like your gall bladder acting up or severe reflux, which I've read can cause pain beyond what one would normally think of as for that. But definitely report it to your PCP if it's keeping you awake and is that uncomfortable.
It's good to remember that we all had and will continue to have pain unrelated to bc, even after a bc dx. And the fact that a recent PET and MRI were both clean is another reason not to think this has anything to do with your bc. (((Hugs))) and please let us know what you find out. Deanna
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I just wanted to update you ladies. I went to see my MO and he suggested a two week holiday from exemestane. I will be switching to femera. I will still continue Lupron for ovarian suppression and Zometa for bone strengthening.
Thank you so much for your support!!!!
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Thanks ladies for your replies. I went to see my Oncological Therapist. I told her I had a bout with the abdominal pain last night. It started at around 930 pm and went on and on until 330 am. Same as the last three times before. So my Oncological Therapist went to the third floor and found my oncologists nurse. The nurse and my oncologist do not believe it is mets. They suggest that I need to try Tumms extra strength first. If that does not work then I need to see a GI PHD. Thankyou again ladies. Another gal at my BC Support Group tonight suggested gallbladder as well. But the pain is not on my right. It starts under my rib cage then down my belly and radiates to one point in my spine. The Oncological nurse said that if it were spine mets I would not have abdominal pain. Ok well off to bed. Who knows. But each of your answers are in tune with what My ONC and her RN say.
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I had a pet scan done yesterday I recieved my results via mychart not sure if anyone is familiar with that but it's an app on my phone that posts all my test results appointments medical history..can be a bad thing because I see my results before talking to my dr my pet scan was all clear no lymph nodes except a tiny spot on my liver they said was nonspecific
In the abdomen, normal uptake is seen in the spleen, renal collecting
system and gastrointestinal tract. Small focus of increased uptake is
seen in the right hepatic lobe with maximum SUV of 2.8. No definite
correlative hypodense liver lesions are seen on referenced CT. Adrenal
glands appear intact bilaterally. No hypermetabolic lymph nodes are
noted in the abdomen, pelvis or inguinal regions.
I'm not sure what this means I'm just worried was hoping we caught this early
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hi ladies - first time posting.
Finished chemo for stage IIb eight months ago. Have been on tamoxifen for about seven months. Generally finding it tolerable - hot flashes since chemo started and some discharge changes - but all in all starting to get energy and mojo back.
Noticing lower back pain and wondering if I'm absolutely crazy for fearing it could be mets after such a short time period.
Onco's office has suggested I stay as active as possible and try to track patterns and whether pain is getting progressively worse.
Anyone diagnosed so quickly after active treatment?
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Hi Steph. it seems to me that everything in your report is pretty normal other than the small uptake in your liver and this could be any number of things other than mets. I would wait until you get a good explanation from your Onc before really getting worried. Just to debunk a cancer myth, when it comes to mets, no matter if they are caught early or much later, the outcome is always the same.
Hi Kazzy, it is possible to be dx with mets so soon after active treatment but that pretty much sort of says that the mets have been there all along, just not big enough for the scans etc to pic up but I wouldn't be stressing too much right now, just keep a mental diary about position and intensity of your pain and if it keeps getting worse over a couple of weeks then I would be asking for it to be checked out.
We all take a while to learn to live without that constant fear of cancer returning but it can be done and if the unthinkable happens? Well it is another day like all the rest and we deal with what ever comes...............as humans, we adjust, adapt and move on and always hope that tomorrow is a better day.
Love n hugs. Chrissy
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Thank you for the reply thankfully I heard back from my dr and she said a small uptake in liver is normal in younger people and she's happy with the pet scan results no lymphs involved but I have a rough road ahead starting chemo next week
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Hi Steph, so glad your heard from your Onc and the news is all good. Good luck with your chemo just remember to hydrate extremely well and rest when necessary.
Love n hugs. Chrissy
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I've got a question...not sure if this a good place to ask but I thought I'd start here. I got my labs emailed to me from MO's office that were done at my last visit in January and my blood calcium level shows 9.7, which is normal. However, in March I went to regular doctor for something unrelated and had blood work then and the result was 10.0 and a couple of days later result was 10.1, my regular doctor says that up to 10.6 is normal....but MO says over 10.1 is high.
So, I'm wondering if this is cause for alarm as I know what a high calcium level could mean. I emailed my MO's nurse on Thursday about and no answer. Maybe they are so sick of me asking questions, idk.
does anyone have any insight on this subject?
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Just compassion for you, for the docs that get tired of us asking questions. Especially when they say not to google. Well, then where do you find answers?
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Tang I think you need to ask your onc what he considers the upper level normal is for your calcium levels. According to all the charts I have seen, between 9 and 10 is the norm for people over 40........the 40 is the key here. When younger, as in teens and early twenties, the level is indeed closer to 10.7. For people with cancer, these levels are super high and most medicos prefer to have our levels at 10 or under.
Check your vit D levels as well as your magnesium levels if these are low that will push your calcium up as the three work together. Also, higher calcium can indicate for Parathyroidism so getting your PTH checked might also be a good thing.
Never worry about the docs getting sick of our questions, it's their job to answer them, like it or not.
Hope this helps a bit for you.
Love n hugs. Chrissy
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Thanks chrissy!
I just wondered if it was normal for them to fluctuate, but it sounds like not so much. I will talk to MO about vitamin D levels as well I do see them on 4/20, but I'd really hoped for an answer prior to the visit.
Thanks yall
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hi everyone,
I have a question about a cousin of mine. She is older, in her seventies. She had breast cancer about 3 years ago, lumpectomy and radiation, no chemo. She now has a mass on her ovaries and has been told it's ovarian cancer. Is this metastatic or a new cancer? From what I understand breast cancer doesn't usually spread to ovaries but it is common to hear of women getting both?
She has not been tested for brca but because of her age I don't think that's a probability.
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Stephanie...maybe she's positive for the BRAC gene. I know that woman who are positive tend to get prophylactic mastectomy and ovaries removed. Her ovarian cancer is most likely a new cancer.
Anyone correct me if I'm wrong.
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Hi Stephanie, if your cousins cancer was ILC it is possible that the ovarian cancer she now has is linked to her original dx but it is more than likely that is is a new cancer altogether.
I wish her great success with what ever treatment she chooses.
Love n hugs. Chrissy
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hi ladies, just checking in. Today is yet another judgement day for my mum - results of scans to be received later. She is 27 months after being diagnosed with be in her brain, lungs, liver and bones.
These recurring days of mega stress are so hard...
But she seems to be doing well - eating more, even gaining weight (which had always been going down before now)more active, positive. Even planted some seeds this week and managed a jog of 5 steps a couple of weeks ago! Previously she was struggling to walk much at all. That's all got to be good signs right?
She has outdone all the websites etc regarding prognosis I think, for such widespread progression. Anyone else doing my the same?
She currently has Docetaxel(Taxotere) by infusion every three weeks. Seems to be tolerating it well.
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Hi Papillon, lovely to see you here and reporting that your Mom is doing so well. Regardless of how much spread there is with this disease everyday is a bonus. Here's hoping that the bonus's keep coming for your Mom and you.
Keeping everything crossed that she gets a good report from her scans.
Love n hugs. Chrissy
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so happy - scans show no growth and a liver tumor even shrunk. More taxotere for mum
I hope you are doing well tooChrissy xx
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Papillon that is wonderful news indeed!! I'm so happy for both of you. May it continue for a long while yet.
Thank you, I am doing very well also.
Love n hugs. Chrissy
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I have had (past several days) nausea after breakfast. I cannot tie it to anything but it occurs 15-45 minutes after eating and lasts several hours. If I am still having problems Monday I will contact my MO. I had a friend that passed 2 years ago, at the age of 52, from BC. Her initial dx was 2 years prior. She developed nausea and was subsequently dx with mets.
Of course, I'm a little nervous. I've never had issues with nausea in the past.
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It could be the arimidex? I know that the aromasin can cause some nausea at times. Please know that it is likely something other than mets...but definitely check with your MO! Hugs and prayers for you.
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I'm on an arimidex holiday due to a skin reaction.
Only other change is that 2 weeks prior to the onset of my symptoms I added pomegranate and flax seed oil capsules to my regimen.
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