If you are not Stage IV but have questions, you may post here
Comments
-
zsterling, you made me laugh out loud with your comment on the thread you should join. You are in the right place.
Fear is in all of us at any stage we are at with the cancer. Some days worse then others and some days where you will actually forget about it.
To answer your question from my experience. After finishing my treatment in 2009 I was told that I was NED and that I could go and take my Tamoxifen. They wanted me to come back for checkups every three months for a short time. And told to let them know if anything changed. They never did any lab work after that or any type of scan. I called them to let them know about left shoulder pain and a decreased range of motion. I was told to go to my PCP and get it checked out. So, I did and they did an MRI and sent me to a specialist (a surgeon) for further review. This guy did some ex-rays and gave me a steroid injection. The injection did nothing for my pain at all. I followed up with my Oncologist office and they still did not want to check it out and just excepted what the surgeon had said. I don't even remember what he said it was but was being treated for frozen shoulder stuff. I just wanted to know, is it bone mets?
I decided not to take any pain meds because they werent' helping at all and my range of motion was getting worse. So I decided to try massage therapy and that did help a little and increased my range of motion quite a bit. So I felt more confident that I was doing what I needed to do to get well. This all went on for a little over a year.
Then I started having sharp pains in my chest on the right side and then a few days later on the left side and shortness of breath. I of course went to my PCP immediately and he did a chest xray and an mri. Then I got the dreaded phone call to come into my PCPs office to discuss my mri results. OH CRAP!!!! Freak out time for sure! I thought, ok I'm fine. Just go and see what it is. Then of course you are like. What a minute, they dont ask you to come in to review your mri results.
So my Husband insisted on going with me and that freaked me out even more. Well they were concerned that the mri was showing that the cancer was back and in my lungs.
Then my Oncologist wanted to see me!!!!!! Go figure.
So they do labwork now and bone scans, mris the whole workup now. My cancer showed it is infact back and we are no longer NED from early stage I was now stave IV with mets in my lungs, liver and bones. And guess what? My left shoulder lit up the brightest. The bone cancer was widely diffuse and enumerable.? (more research time) basically all over and too many to count. It was in my bones from my skull all the way down to me knees. Everything effected. My very first tumor marker was taken and it was almost at 9000. Now I now my cancer was aggressive but PLEASE! I can't help but wonder how much we could have done to try and stop the progression if they just did more screening.
So if I could do this over with what I know now. I would demand tumor markers test and scans. Sure they do that now that I am stage IV and scan scan scan.
I have changed Oncologists since this recurrence and couldn't be happier with my new team. I don't blame anyone for it coming back but I will not be just sent home ever again and not monitored.
0 -
wrsmith2x - I never had a local recurrance.
zsterling - my bone mets were discovered after my tumor markers (CEA and CA 15-3) went up. I wasn't experiencing any pain yet, but did shortly after this. My onc confirmed with a bone scan. An x-ray didn't show the mets yet. The pain did not feel like a sore spot. It felt like I had twisted something in my hip/back area. It got progressively worse and ibuprofen didn't help with the pain. In fact, one of the ways I know now when I'm dealing with bone pain as opposed to other pain, is that ibuprofen doesn't aleviate it. I had a lot of various sore spots after my initial diagnosis and treatments that were not due to mets. I think a lot of it was referred pain from my surgeries and radiation treatments. Bone mets pain for me is a much deeper and a burning-like sensation. I hope this helps!
0 -
Thank you so much for all the responses. It is helpful to hear what some of you have gone through. It seems odd to me that the docs nowadays insist that scans etc are not useful until we develop symptoms, but then they remain somewhat unwilling to do a detailed work-up even when symptoms develop (ie "P.O.P"'s shoulder pain). I guess I'm ok with the xray for starters and I like the "wait 3 weeks" suggestion (Moiralf). My oncologist hasn't exactly been speedy with scheduling my xray--so I'll probably have a chance to see if it goes away before my appt. I do feel the one sore spot sometimes just from certain movements so I think that particular spot is one I will be aggressive about if it doesn't go away. Again... thanks so much! I appreciate advice from women who are going through this because it is clear you're not just giving me platitudes to encourage a false sense of security. This website has been a wonderful resource!
0 -
i have a question about lung mets. I have recently been shorter of breath than normal(last 5 months). I am a smoker. Signing up at local hospital to help me through the quitting stages and the meds. My nail beds are bluish/purpleish with a pale white toward the top. I have shoulder/upper lung weight or dullpain. I can't walk up my back yard without getting out of breath. I was sent to a cardiologist to rule out heart conditions. Passed with flying colors, although the treadmill test was a b***h. I was sent to local hospital for a breathing test. Coughed alot on that one. With my smoking, COPD/Emph. seem to fit the symptoms. Last lung x-ray was in July. dr. said was clear. Should I ask for an MRI or a CAT scan? I do not see my Onc. until January. I have already had three different types of cancer, cervical, vulva and last but not least, Breast Cancer. I am paranoid at the thought of it coming back. Nails haven't looked this way even when I have had puemonia.
Coming up on my 5 year mark. Tumor markers have been a little up then back down. It wasn't high when i was diagnoised either. On PET breast cancer showed as a 3. Subclaviclar lymph node was a 2. lymph nodes by cancer breast didnt show up at all and was poorly differentiated. No other treatments besides CMF chemo. Tamoxifen had me crawling the SE's were so bad. Took me off it after 3 moinths.
I had vascular invasion as well as perinual invasion. Still don't understand those to well
My dad had lung cancer, left shoulder hurt and ached. they gave him steroid shots before the actually found the lung cancer.
0 -
dsub,
I had shoulder pain for over a year but the shortness of breath was pretty sudden and my xray and scan showed possible mets to my lungs. That is when my Onc took the steps to do the complete work up and learned that i had the cancer back and now in my bones, liver and lungs.
It sounds good that the xray didn't show anything. But I would personaly call my onc and get in before January to have everything checked and give you some peace.
If I have learned anything at all it is to not be afraid to demand care and screenings to be allowed the chance to catch it as soon as possible and to trust my instincts.
hugs to you and good luck with quiting smoking. You can do it.
0 -
Hi dsub. I had the same problem and still do but no lung mets. After all the testing etc I have COPD. I'm also an ex smoker........three and a half years now, so I know it's possible to quit if you are determined. It will take a while but I found the first three months the hardest and it got easier as time went on. Good luck on that one and if you are really concerned about your lungs ask for and insist on a CT so you can have peace of mind.
Love n hugs. Chrissy0 -
Thank you for your responses, The power of pink and Chrissy. I wouldn't be so concerned if I didn't already have a low immune system and so paranoid. I think I will call local dr and ask for the CAT scan. At leastfor peace of mind.
0 -
my orig dx was in 2001, IDC, grade 2, stage IIB no lymph nodes. Mast, chemo and radiation. Tram Flap in 2002, Recurrence in Tram 2010, same spot. Put on Aromasin. Last wk I was dx'd with same cancer in opposite side lymph nodes. Had Pet Friday. I will get results Tuesday. So, question is since it is now on the opposite side lymph nodes, does that mean it is in the body hiding out somewhere??? I read it is rare for it to show up on opposite side as a regional recurrence.
help, please.
0 -
0
0 -
It was in the skin and muscle. I think it is still there, hence the 3rd dx. I guess Aromasin was not for my body and my cancer.
0 -
Hi all! I seem to be losing weight by the day. I haven't been diagnosed with liver mets but am suspicious now. Was weight loss one of your symptoms for liver mets? Thanks so much! Hugs to you all!
Michelle
0 -
Hi Michelle I don't have liver mets but I have heard that unexplained weight loss can be an indicator for them. Having said that, I have also heard that the weight loss can be rapid rather than bit by bit. There are many things that can cause this weight loss, stress being just one.
Keep an eye on it and if it gets to be a lot or you are really uncomfortable with what's happening please go see your doc and get checked out........it's called peace of mind.
Love n hugs. Chrissy0 -
Hi Chrissy, I have been stressed out lately. I will get it all checked out. Thanks for your input!
Michelle
0 -
Interesting to know about the weight loss and liver mets. I do have liver mets - however was not losing weight prior to diagnosis. I have lost a little over 40 lbs (has been gradual) over the past year for no apparent reason. Onc has never mentioned the link between mets & weight loss. He seems to be stumped. Perhaps it is the mets?
0 -
Barsco my doc asks every time I see him if there is any unplanned weight loss. He said that for some people it can be an indicator for liver mets.
Just like everything else, we are all different and what happens with one is not necessarily what will happen with another. Treatment alone can induce weight loss. Hoping you don't loose too much before it can be explained.
Love n hugs. Chrissy0 -
Nanka - my weight loss was incredibly fast, 60 lbs. in 5 months. It started with early satiety (feeling full very quickly when eating) and w/ this concern, saw my PCP who ordered a CT. Sure enough, mets were found in bones and stomach. I've yet to hear of anyone else with mets to the stomach but then, ILC goes to weird places but it seems incredibly rare. These symptoms, I've heard, are similar to ovarian mets. If your weight loss continues at a fast rate, get it checked out. I never suspected that rapid weight loss was a symptom of mets. I'm 2 years out now from the mets dx and doing very well and maintaining my weight at a sveldt but skinny 120 lbs.
Lynda0 -
By the way Chrissy, this is a great thread and thanks for starting it!
0 -
Hi Linda, thanks for your reply. Mets in the stomach, that seems rare but I also have ILC and read a lot about how it spreads to different parts of the body. So glad you are doing well! My weight loss was a gradual 12 lbs over 6 months. I initially weighed 140 so it was very noticeable. I was also very stressed during that time but you know how it goes with this stupid C! Every little thing makes you wonder. Again, thanks for your input.
Michelle
0 -
Deep breath... Never expected to be posting here (and not quite sure if this is the best place so feel free to throw me somewhere else, if not).
Had a bone scan on Friday and asked them to send me a copy of the radiologist report as I am not scheduled to see my MO until 11/8. She ordered the scan (and a brain MRI which I am having tomorrow) when I was complaining about persistent back pain and headaches at my August visit.
The findings/impressions state, ...Suggestion of upper lumbar spine, probably L1, metastatic focus. MRI evaluation of the lumbar spine recommended...
So, I guess the question is what do you think are the odds of the spot being something OTHER than metastases?
These are the same radiologists who found my relatively small IDC and every doctor I have seen (including at MDA) thought did an outstanding job of detection, so my level of confidence in their credibility/expertise is quite high.
I am not panicking (although I see some xanax nights in my near future) having read these boards enough to know more testing and lots of good years are ahead of me... But I guess I needed to reach out and ask the question during this ACK moment.
Thank you so very much and know I have you all in my thoughts, as well.0 -
Hi Ysa,
I wanted to say hi mainly because I'm also from ABQ (moved here right after my excision), but also because my signature is so similar to yours and your story scares me a bit. Just curious-- was your genetic test in the good range (ie no chemo)? Are you in the under 50 at diagnosis group? It seems to me you'd have to have really lousy luck to have a met at this point since we're in such a 'good' group prognosis-wise and I sure hope it's something else.
0 -
Hi, zsterling.
Please try not to be scared! There are a lot of unknowns in my family history and if I've learned anything over these last 10 months it is that every dx is unique with lots of personal variables.
To your questions: My insurance denied genetic testing when I was first diagnosed and, as it appeared I was a garden-variety early stager, I didn't pursue it due to the cost. I was 55 at dx but, like many of us, was told the cancer had likely been growing for many years before it was large enough to detect via mammography in my relatively dense breasts. I had two spots in my breast and a positive node so, while unlikely to have had it spread, I did realize that it was a possibility. If it turns out to be confirmed mets, I kinda suspect it might have been there all along. I have been on Femara since May 1 and it very well may have already helped! I had no chemo or rads.
My mom was diagnosed with BC when she was 59,and has also survived colon and lung cancer. I have never had medical information on my biological father's side so have no idea what may be lingering there.
Sending you hugs and hoping you will not stress too much over this. We all are truly unique and the odds really are in your favor right now!0 -
Ysa, I had a "lesion" on one of my vertebrae in a PET scan, read similar to yours by the radiologist. MRI found NOTHING. It is supposed to be more sensitive for bone things than the PET scan and bone scan. I had a skin recurrence (they called it a "button") which is why I had the PET scan to make sure there were no other spots, so of course I was freaking a bit with the positive finding, but it turned out to be a "false positive." I hope yours is as well. Hang in there, let us know how you are doing. I know how frustrating and stressful it is to be on the edge of stage III and just waiting for another shoe to drop, but always hoping for the best.
0 -
My boyfriends mother is stage IV and we're scared.
Here's a brief history:
She was diagnosed with breast cancer about 12 years ago. She went through chemotherapy and a mastectomy. After treatment, she went into remission and stayed that way until about 2.5 years ago. She was having trouble breathing and went to the doctor where they discovered she had developed lung cancer.This was being treated with hormone therapy. Soon after, possibly 6 months or so, she discovered the bone mets. The pills and hormones that she has been taking kept the lung/bone cancer from progressing up until now.
Last week, we got the news that it has spread into her liver. They've caught it 'early' thanks to her regular appointments and are discussing the type of therapy today. Most likely she'll begin chemo again.
She's scared, we're scared. We don't really know what to do. It's devastating news and I guess I just don't know where to go for support. What can I expect? How can I help?
0 -
It is a very scary time and devastating when we get progression. We all have to expect it at some point but we never want to arrive at that point. It is very much the other shoe dropping.
There are some very good chemos that your boyfriend's mother can use and they can be very effective on the liver.
I don't have liver mets so I can't help you on a personal level but I know that the women who have that experience will be along to help you.
Reading some threads here will also be useful in researching what others have found most effective for them.
It is very difficult right now and you need to take care of each other and ride the storm through this patch. There is still lots of hope for treatment but this time is oh so hard.
Please also remember that if she is not already using some anti-anxiety or anti-depressants, that this is also very usefully in helping to deal with the stress of everything.
All the very best for you all and keep coming here, the support of others is so hepful.
0 -
Hello ladies. I don't even know where to begin with questions, but I know I need support right now and I don't where to turn.
Today I had a CT scan and Bone scan as requirements for my participation in a clinical trial for denosumab. I had a big scare last year with a Pet scan during my staging process which lit up in my T4/T5, my left shoulder, and my right hip and my left (good) breast. Further testing with a bone/CT scan showed arthritis in my neck, and nothing in shoulder or hip. Osteoarthritis and rheumatoid are very common in my family so it made sense. My breast surgeon did an excisional biopsy on my left breast which revealed no cancer--just perfectly normal breast tissue.
Today as I lay on the table having my bone scan I could see a "bright white spot" in the middle of my back on the computer screen. I had been having very vague back pain, but now there it was staring at me--a hot spot--I knew this was bad. The technician took additional "films" while I was on the table and was very serious--another bad sign since she had been pretty casual before this.
Now fast forward to tonight and I pulled up my CT and bone scan results from the online charting system and both scans show activity at the T6 and the CT scan mentions the L1 and multiple tiny nodules on my liver which appear to be stable. The T6 is described as a lytic lesion. The lesions in my neck and hip and shoulder were compared to last year and continue to be described as osteoarthritis. I've already emailed the study nurse so she can set up an appointment for me tomorrow with the doctor because I can't wait until Friday afternoon.
I know I have to try and hold it together for my family, but I'm terrified that I am not going to be here to see my 3 sons become men with families of their own. My oldest sons are 20 and 18, but my youngest is only 12, with some special needs to boot, and the thought of not being able to help him navigate to adulthood breaks my heart. My husband is a good man and I know he would do his best, but it's still not the same.
Please someone tell me--how do I hold onto hope?? Is it possible that the lytic lesion is not a bone met? If it is confirmed as a bone met, what should I expect treatment wise? Any advice or support would be a gift right now.
0 -
I don't have bone mets, I have liver mets. So, I don't know if a lytic lesion can mean other things although an infection or cyst can be referred to as lytic.
But, if it is cancer, women with bone mets can live many years and it is reasonable to believe you will see your son graduate. I also want to remind you that you can't read scans - I have had things "light up" that were not cancer numerous times. Radiologists go to school for ten years for a reason. They also phrase things in former cancer patients in the worst possible way in those reports. Everything is possible mets until further testing, that is their MO. You have to realize you don't really know what you are reading and give yourself hope. You are getting a quick appointment to have it interpreted and then you can go from there. We all live with mets and we manage to live quality lives, especially the ladies with bone mets. I hope you don't have to find out personally - but if you do, you will get tons of support here.
Take yourself out of the situation until you hear for sure. You don't know, so take a hot bubble bath, watch TV with your son or play a game, do something you enjoy, take a walk, and try to not worry. Every minute you worry is a minute you are taking away from your days. Whatever will be there is there and nothing can be changed now so try to put it out of your mind as best you can.
I know for sure you can't do that completely but you will find if you stay active, stop googling, and get outside, you will feell better and your attitude will change.
Good luck and let us know what the doctor says.
0 -
Bless you Ann for your quick response. Everything that you wrote is what my brain knows is true. I am not a doctor and I shouldn't even have looked at the scan but it's hard not to go to dark places when you see the concern on the technician's face.
I will take your excellent advice and get some rest tonight and put this problem in God's hands while I try to sleep. And you're so right--I don't want to waste a moment on worry since I'll never get that moment back--cancer or no cancer.
Sending you cyberhugs and much thanks for talking me off a ledge--I'm still standing on the ledge, but I'm going to look around and enjoy the beautiful sky before I jump.
0 -
Just a very quick note to say I agree totally with Ann.
I have had bone mets and in my spine too. That was 5 years ago and I am currently considered NED. I have had a couple more small spots come up but treatment has worked well and i am living a very normal life. Even if those spots do turn out to be mets you can do lots of things to treat them.
I also had two areas on my liver that showed on scans. They were not cancer and have never changed. From the scan they could have been cancer but many people have marks on their liver that show up. Just to let you know that things can be other that what we first think.
It is incredibly difficult not to go to the worst case scenerio, that is normal but as much as we can we have to keep calm and stay in the moment. Remember to take deep breaths and exhale fully. Helps to relax the chest and slow the heartrate.
All the best for your appt. really great to get in quick and know what you are dealing with, if anything!!
0 -
Thank you Moiralf for your kinds words. You and Ann are amazing to reach out to me and i appreciate your words of wisdom as I try and navigate what is going on.
I was able to see my MO this morning. He squeezed me in on top of an already full schedule and that is why I love him--nothing comes before his patients.
He agreed that the CT and bone scan are very concerning for mets at T6 and L1 (L1 only showed up on CT, not bone scan). Having said that, he said he would not jump the gun until I have a bone biopsy on both of those areas. He remarked that my PET scan last year lit up in lots of places and it was all due to inflamation/arthritis. This year's CT/bone scan confirm no changes to those areas--still arthritis. He admits that some people just are more sensitive to scans than others and he feels I might fall into that category. He is also looking beyond arthritis to other bone conditions that could cause these results (mentioned Paget's Disease). Ultimately though the biopsy will confirm one way or the other and will also show the receptors which are important for possible additional treatment planning. The liver nodules were just that--very tiny cysts that evidently were there last year on the CT, but are considered benign. He said that the fact they have not changed in a year confirms that fact. Who knew we have all these things going on in our bodies without knowing anything.
We went to the worst case scenario--that this is bone mets--and he's already looking ahead to how it would be treated and what he would recommend. First and foremost he would send me to Johns Hopkins to get a second opinion and and to be screened for clinical trials that they are running. He is on the faculty at their medical school and is personal friends with their clincal trial breast cancer expert. He also discussed the new treatment options for HER2 positive breast cancer including T-DM1 and Perjerta (sp??), and other drugs that for the moment escape my memory. He basically said that IF this is cancer in my bones, he has lots of treatments available to keep me around for a long time.
It was hard not to cry in front of him and with my poor husband fighting back tears next to me. I'm going to try and take your good advice and stay focused on the present and wait for the biopsies to be scheduled.
I want you to know that your kind words and wisdom have been such a blessing to me and please know that I hold you all in my hearts as well. I have been following these boards since I was first diagnosed in 2011 but I have been too shy to participate in the discussions. Time to let go of shy and jump right in the pool. As the mother of 3 competitive swimmers, I hope I can make them proud.
0 -
Hi ladies, forgive the intrusion......just wanted to post that I met a lady yesterday and I was telling her about my BC.....she told me about her husband who was diagnosed
29 years ago!!!!!!!!! with lung cancer.....he had chemo and is still going strong.....was diagnosed in his 50's and is in his 80's now. I know it's not BC but some of us end up with mets to the lungs so I thought I would just share the story...gives hope to all of us.0
