If you are not Stage IV but have questions, you may post here
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Jadison, the answer changes depending as you said on where mets are. Drugs we take can affect us, also if we are getting chemo.
I do not have any pain from the cancer. My cancer has not ever caused me pain, even when it moved to my brain. It will be different for all of us.
Generally, if there is a new unexplained pain that is intense or even a minor one, if it does go away after 2 weeks, it should be followed up with your onc or doctor. Good luck. Obviously if it is intense, that should be followed up sooner.
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QuinnCat, did you mean the osteoporosis drug Fosomax (a bisphosphonate)? I believe the anti-estrogen drug Faslodex (a selective estrogen receptor degrader), is only used to treat metastatic bc, unless it is in a trial.
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Hi ladies, bone scan clear, just some arthritis in my neck and knees. MO will repeat TM's in 1 month, if still elevating I'll have a PET. Going to try hard not to think about it. Thanks all for your support!
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Shetland - yes, must be Fosomax, because it was a drug reserved for bone preservation, but maybe it is Faslodex. We didn't speak much, but she mentioned one side affect (ever so briefly, like we nodded we both knew the one most spoken SE, jaw deterioration, but maybe that was what I was thinking and she was thinking of a SE associated with Faslodex, for all I know), but that one SE was such a low probability.....geez
Have you heard of Fosomax helping prevent bone mets?
btw, looking at your cancer profile. Our tumors the same size, both dx'd in 2011 (mine at the end). Did you have a PetScan when initially dx'd? What is an "ITC" in I assume your SN?? I did have a PetScan, only after they discovered I was brca2+. Nothing found but my high uptake great tumor SUV 8.3
Again, thank you for your help. xxo
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You're welcome, QuinnCat. Without your stats, it's a little hard for me to know what is relevant to you. Bisphosphonates are given to try and prevent or treat osteoporosis. Since anti-estrogen therapies increase the risk of osteoporosis (except tamoxifen in premenopausal women), breast cancer patients often take such a drug. A few years ago there were some studies with the bisphosphonate zoledronic acid (Zometa) that indicated a possible benefit in preventing bone mets. The idea is that a healthy bone microenvironment is less fertile soil for bone mets. There are some problems with these drugs, such as a small number of women who get osteonecrosis of the jaw or weird fractures of the femur. Ask your onc for the latest news on this, and the risks and benefits for you in particular.
I fell on the wrong side of the statistics. Most people with my stats will remain cancer-free. My first onc in 2011 and 2012 did a baseline bone scan (clear) and regular tumor markers (normal). I did not have a PET scan until I had upper right quadrant abdominal pain in 2014. ITC means isolated tumor cells in the sentinel node. All the oncs said this did not matter, especially as I had whole breast radiation and systemic therapy. I tested negative for BRCA and other bc genes.
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Shetland - Was it the 2014 PET Scan that discovered your mets? Liver? Yes, you do not fit the profile for mets. One of the women in my surgery group (December 2011) had a 7mm tumor, triple positive, grade 3. She did the chemo and perception, but skipped the hormone blockers because her "tumor so tiny." I was still surprised to see she had bone mets by 2014.
I am ER+ PR+(though barely), Her2-, grade 3, 1.4 cm, 0/1 node, no lvi, oncoscore 39. My Dexascan does not show more than stable osteopenia. dx 11/11/11.
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question: Dx was Stage IIIC surgery LMX Dec 9, 12 positive nodes. Spoke to MO in Dec discussed Chemo-she ordered CT, Echo and Port. Short version: she never started me on chemo as of today, had a PET and the RO has basically stepped up and taken control. Now because of PET MO says stage IV so only put me on arimidex. Due to the actions of the MO and seeing my BS and RO, they think I should have had Chemo because of nodes. Second Opinion with a new MO on Monday. Is it too late to do chemo or do I just assume MO knows that arimidex is going to kill the cancer based on surgeon knowing he did not get clear margins?
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Hi Goincrzy. If you have hormone positive cancer and stage IV then Arimadex is standard of care as a first line treatment. Chemo is kept for further down the line or if TN.
Stage IV is treated with quality of life and control of the cancer in mind rather than cure........that's not to say that you can't get into remission as you can. I'm living proof of that.......I have been in remission with no active cancer for five years and my only treatment had been Arimadex and Femara.
Hope this helps.
Love n hugs. Chrissy
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Hi
It is 6 years since I posted. I developed pain in my lymphedema arm which then led onto a DVT in my neck whilst on my 6th year of Tamoxifen. A CT scan now shows a 29mm shadow behind breast or lung, they do t know yet. I am in total shock and praying it is bad chest infection from Jan. So I now have to wait for their advice on when to stop blood thinners in order to do a CT guided biopsy. I can't see any hope right now. Any thoughts most welcome.
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Hi Jackboo, just a question. Did you have rads as part of your treatment? If so, what is showing up is possibly scaring or damage from rads. We do these treatments as they are recommended but are never or rarely given the full story of their lasting effects. Hoping your biopsy proves nothing to worry about.
Love n hugs. Chrissy
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jackboo, my advice is to be proactive. If you haven't heard when to stop the blood thinners, get on the phone and be persistent in getting answers. Don't let the doctors drag everything out. Get the ct guided biopsy as soon as possible, once you are okayed for it. I had to learn to be assertive to get medical appointments sooner rather than later.
It is hard to say what the scan is showing now. I have no experience with that. If you can, try to stay busy doing things that take your mind off of the upcoming biopsy. Do things that you really like. Spoil yourself, even. Turn down stuff you just don't want to do. Get out in nature. Take some walks. Write your thoughts down everyday in a notebook or journal, three pages a day. Take some deep breaths. Best wishes. I hope for all good things for you.
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jackboo...is it possible to get a mri to let them see that shadow clearer, if they cant tell exactly where it is (breast or lung?) maybe they will hold off on the biopsy until they have more info...wishing you the best
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Hi Chrissyb
I am very grateful for your reply. I remember now the strength I got from this forum years ago. To log on and see replies is heartwarming.
Yes I had 3 weeks of rads. I wish it could be anything other than a cancer but it's highly suspicious and could be the cause of this DVT.
I face a long wait until they feel it's safe for biopsy.
Best wishes to you and thank you.
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Jackboo, Tamoxifen has listed DVT as a rare SE so it's possible that yours has been caused by this and not what is showing on the scan.
Usually once you stop the blood thinners it's a couple of weeks before the docs deem it safe for biopsy or surgery.
Sending love n gentle ((((((hugs)))))) to help ease the concern. Chrissy
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hi again
It is difficult to deal with this over a weekend somehow. I was also given false reassurance by the team dealing with the clot. They ordered the CT and told me it was all clear. Unbeknown to me they then passed it to the BC team who had a multidisciplinary meeting last Wed and discussed this " shadow". This has made the shock worse. I know I can't change this but I am not coping. I have hardly slept and feel sick at the thought of resuming treatment. I also can't seem to find many ladies with a reoccurrence in either lungs or behind breast? Perhaps I should try and get some anti anxiety meds
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I was just wondering if anyone can shed any light on the vagueness of where my suspicious shadow is supposed to be. I've been told it is either behind the breast- does this mean chest wall or the lung itself. I'm scared because I can't find many examples of lung issues. they have said its only this area at the moment- can I gleam any hope in that
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Jackboo there is always hope........as far as the team looking for DVT's you were clear but it was good of them to pass the results onto the BC team as they could just as easily dismissed that shadow all together . Even though it was a shock, it's a good thing that they are looking at those results and investigating further.
I do understant just how hard all of this is to deal with but if you are not coping a quick visit with your GP for some anti anxiety meds to get you through could just be the thing and if you are able, that's what I would recommend.
Love n hugs. Chrissy
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Hi again Chrissy,
You are right to see the BC team's scrutiny as a positive thing. It is so easy to look on the dark side. There is a multidisciplinary team meeting about my case and I may know what the plan is by midweek. I am trying very hard to be posititive, for example just one area of concern at the moment. I just feel like there are so many uncertainties, I am a teacher and that's why I like to be in control.
Do you know why where the lung posts are at all
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Jackboo the easiest way to find them is to do a search using the words 'lung mets', that should bring up a list that you can go through.
The only way to deal with this disease is by taking it just one day at a time and trying not to be too concerned over uncertainties........I know, easier said than done but it's actually a great way to live. Just control the things you can and let the universe take care of the things you can't.
Love n hugs. Chrissy
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Chrissyb> even with 12 positive nodes? BS is concerned that no chemo was offered because I was stage 3C after SX. Had she started me on chemo in a timely fashion based on that information then it turned to IV after pet, what would have been her choice? To stop all chemo? Just trying to wrap my head around this.
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Goincrzy as a stage III at original dx chemo should have been a given.......no ifs buts or otherwises. Your Doc at that point dropped the ball for what ever reason.
As for choices had you been on chemo prior to the PET, chemo would have continued as the aim would have been control of the cancer rather than cure, so you would have completed the rounds of chemo ordered. Possibly, after that, changed to Arimadex and monitored as we all are.
It's really hard to get our heads around all the ins and outs of cancer and must to some extent trust that the medics that are treating us know what they are doing. Having said that, I think it's up to us to ask questions and if we don't get a satisfactory answer then to keep asking until we do.
Love n hugs. Chrissy
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thanks Chrissythat is my whole issue with the process, she should have started chemo and 3 mos after SX no chemo with 12 nodes positive. That is my second opinion reason.
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Goincrzy I do know that some docs wait a little while for surgery to heal and if rads are given for the skin to heal and then chemo is given. You mentioned that a port was put in in preparation for chemo.........is it possible that your MO is still planning chemo for you? Either way, a second opinion is always a good idea.
Love n hugs. Chrissy
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When the BS called to talk to RO about radiation because as I said he knew he didnt get clean margins she said no Rads till after chemo. He spoke to the second opinion Dr which is his collegue and he spoke to current MO.I have appt Monday with his colleague for my second opinion. They are all in agreement I should have had chemo, and my gut says she (current MO ) messed up.
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Yes, I would agree particularly if rads were to be given after.......it does indeed sound like she dropped the ball.
At least your second opinion is just a day away so things can be picked up and put back on track. Goodluck with it and do let me know the outcome.
Love n hugs. Chrissy
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Goincrazy8, maybe your onc suspected that you were stage 4, and that was why no chemo was offered? Because if you were, then in most cases, it seems chemo is not offered because at that point, it is all about quality of life, because chemo can and in many cases, does cause many other problems. I always wondered too if I really WAS stage four from the get go, because my pet scan was showing a few weird things before chemo, that my after chemo pet scan never showed or even mentioned. Because when I was having problems in my very first year after dx, I tearfully told my BS that I wished I had been stage 4 from day one, SHE thought I was wishing my self dead! No. I was just wishing(I had been so rushed into everything, and didn't even have time to KNOW which questions to ask, or to just insist on only hormonal therapy) I would have went straight to hormonal therapy: NO surgery, NO chemo. She is no longer my BS, even tho she was a gifted surgeon, just because she got tired of my questions and let me know it, too. But here I am supposedly still stage lllc, alive.
jackboo, big hugs
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tomboy so with 25 positive nodes you would have just done Horomone therapy?
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Goincrzy8, for what it's worth, I was initially dx, stage 2 after biopsy of breast and sentinel lymph node tested positive for ER+, PR+ ILC. BS sent me right to MO for neoadjuvant chemo. I had 6 rounds, 1 every 3 weeks and then they waited 6 weeks to do my bilateral MX. Turned out I had 10 positive nodes all with extracapsular extension, lots of active BC in breast and LCIS in left breast for a final dx of 3C. The chemo had absolutely zero effect on the cancer, it was quite a blow knowing that I could have skipped it and gone right to the BMX and rads but who knew? I take my little Arimidex everyday and tell myself that it is keeping the cancer away. Everybody is different, seems each cancer behaves differently and second guessing and coulda, shouda, woulda will make you crazy. It is what it is and we have to move on from there, knowing what I know now I would not have had chemo but there was no way that me or my doctors could have known. That said, if there is anything I've learned it's that I have to be informed and do what makes me most comfortable but there are no crystal balls. Good luck with your second opinion, I hope you find the best treatment for you and peace of mind moving forward.
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Primary recently ordered CT of head and neck to explore cause for some neuro symptoms. Found a "lytic lesion" in C3 spine. Neurologist said not responsible for symptoms, but my onc should see report. I was kind of stunned. I came home and started researching and got a little scared. What I read sounded like ca. Called onc. She looked over CT and ordered a skeletal survey (I cannot have a MRI as I have a pacemaker). Now I find out I have multiple "lucencies" on my skull. Onc says blood work clears multiple myeloma; but we (she) don't know just what these things are on your skull. They could have been there all your life and cannot be biopsied. Just have to wait and xray again in July. My primary says I am imagining pain and headaches because of the xray that she never considered that I may have bone mets. Am I gun shy? Or should I be concerned (anxious, desperate, fearful, etc)? I know I'm with the experts here on this site (the been there, done that crew) On a professional site I read that the shadows(lucencies) don't appear on radiograph until 30% of bone has been destroyed, 55% of bone mets to skull is bc mets, and the average time post bc for its diagnosis is 71 months. Yep, I'm worried. Anybody know about this.
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