If you are not Stage IV but have questions, you may post here
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Do you know if there are alternatives to Tamoxifen? I am not menopausal yet. Dr said if it is a reoccurrence it might mean Tamoxifen is not working. I guess they don't want to formally classify me stage 4 without the Biopsy results.
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Karensusan there is another drug called Fareston which is in the Tamoxifen 'family' other than that there is the AI's, Arimadex, Femara and Aromasen but for these three you either need to be post menopausal or be injected with Zoladex to basically turn your ovaries off.
Love n hugs. Chrissy
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I have read this thread on and off since joining BCO three years ago, and am always inspired by the kindness of those with Stage IV for those of us with questions and concerns. Thank you - especially chrissyb - for being so generous of heart and spirit.
And finally, I find myself here with what is likely a silly question about liver mets, because (as we all know) Dr. Google is a quack. Had a CT w/contrast a week ago to check on abdominal/ovarian pain and pelvic "fullness". My GYN had to leave town for a family emergency and won't be back for a few weeks so I went and picked up a copy of the report. Pelvic area looks good - no fluid or cysts or tumors. Bones look good. "Multiple" tiny hypodense lesions on spleen - no other information. "Multiple" hypodense well-defined lesions on liver, largest on posterior segment of right lobe, 1.4x1.4cm, no enhancing lesion within liver. Impression : no acute abnormality.
Like a fool I start googling all of this and discover that the interwebz is a bad doctor - reputable sites note that hypodense lesions can be both mets, and cysts. That no enhancement can be both mets, and non-mets. I'm holding on to the final impression to mean that everything is good. I do have my 6-mo follow-up with MO in 10 days and will get more info then. Just trying to figure out what this all means (two other points: I only took Tamoxifen for a total of 3 months, and it's been almost 2 years since my final pill, and this is my first contrast CT scan do there is nothing really to compare it to).
Thank you so much for your words of wisdom!
(Edited for typos)
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NancyHB.....I had multiple hypodense nonenhancing lesions on my CT scan for staging just over a year ago. The largest also being 1.4 cm. They ordered an US to further evaluate these lesions and they were determined to be cysts. Just last Friday I had another US because iwas having pain. They only found the one cyst and it still measures 1.4 cm. Cysts are not uncommon.
I am hoping this somehow brings you some comfort. I'm sure your onc will have an answer for you. Ten days isn't that long to wait but can feel like an eternity given the circumstances.
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Hi NancyHB I know how hard it is to get a report and then try to figure it all out but I will agree with Dutchiris on this one, sounds so much more like cysts than anything else. Breathe, deep and slow and try to relax a little.......ten days is not too long and will go by in a flash if you keep yourself busy.
Good luck with it all and please let us know.
Love n hugs. Chrissy
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Thank you, Sharon and Chrissy. I appreciate your feedback and insight. I am patient but curious - I learned when diagnosed that what will be, will be and that worrying about anything is a waste of my precious energy. Ten days isn't long at all, and I fully expect to hear, "all's clear!"
Thank you again for taking the time to respond to my questions; your knowledge and compassion are invaluable.
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Nancy, try not to worry. usually the radiologist will write "suspicious for metastatic disease" or something along those lines if they think these things are mets. At least they always do with mine.
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karensusan, I have also heard that the markers are very inaccurate. MO does them only to show tendencies, i.e. if the number were to shoot way up that would be cause for further investigation, but that the numbers in and of themselves aren't too meaningful and some fluctuation is normal, as I understand it. I have also seen various women report similar types of things on scans of their liver and had it turn out to be nothing, so I am not too worried for you. However please keep us posted.
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pajim - thank you for responding. The *only* reason any concern ever crossed my mind (and why I wanted a little further clarification from the educated community here!) is that the radiologist who wrote this report also read my very first US and was completely and utterly wrong (luckily I had a surgeon who must gave known something was amiss because he really pushed for a surgical excision instead of wait-and-see). But I trust my MO to let me know if there's anything to bd concerned about. Thanks again !
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Hi. Sorry to bother you all, but I have a question. I am very confused. I always thought stage 4 meant mets. But with my recurrence my MO said I am Stage 4 even though it was contained to the scar tissue in the breast. They called it recurrence to the chest wall. There was one lymph node involved but it was removed with the scar tissue/tumor.
Does this make sense?
Thanks!
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my mind is spinning with thoughts so instead of going to dr google i come to you.
I actually have an appointment with my MO tomorrow, over the last month or so i've had this pain on my right side. At 1st it would come and go and now i am noticing it more consistently. For a while i brushed it off since I had the DIEP surgery in January but now that it's getting worse i think the worse. I fear its my liver. no other issues/symptoms other than the pain on the right side.
i guess i will know what my MO thinks tomorrow. it is what it is
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jenjenl I know it's easy to let the mind run towards mets every time we feel something different but I would be thinking more along the lines of an issue with the results of your DIEP. All that area has been moved around and played with and it does take quiet sometime for it all to settle even after the initial healing is done.
Here's hoping your MO thinks the same thing.
Love, hugs and best wishes. Chrissy
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Basia, if the involved lymph node was in the chest area -- not an axillary node -- that's probably the explanation for the re-dx as Stage IV, even though it's since been removed, and hopefully won't present any further problem there. But do ask your onc to be sure. It's always such a shock to hear "Stage IV," but I am learning that it's not uncommon for someone to have had very limited, well-controlled mets, and still be considered Stage IV because it had shown up outside the breast tissue or axillary nodes, no matter how small. Deanna
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thanks Deanna!
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my MO ordered a scan but doesn't want to schedule it until i see my surgon to see if it's normal or not. I have a bad feeling the same feeling i had after my biopsy. when i had my scan prior to the DIEP (the abdominal scan) there wasn't anything but we all know how that goes.
I had my surgery January 2014 with wonderful results. I had stage 2 in May and stage 3 scheduled for July. My doctor put some disolvable mesh in my tummy vs wearing a binder. about 6 weeks ago I started having pain on the right side above my insion closer to the ribs. I just watched it, it would come and go and now im more aware of it. i thought that maybe it was the disolvable mesh disolving but would have thought it would be the same on both sides.
Scared but hopeful
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if that is true about the nodes in the chest, then why wasn't i classified at stage 4? I had level 3 nodes and mediastinal nodes, that they didn't want to remove for testing, cause they took so many anyway. they said on paper, that hopefully chemo and radiation and hormonals, should mop them up. And, a few weeks ago, i had read that nine years ago, i WOULD have been staged a four. anyway, i am gonna have some fun, and do as much as possible, till i can't move!
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kathec, when it comes to staging, I've read in the past that finding bc in chest wall nodes that are outside the axillary system is more concerning, and that's what I was thinking of when I responded to Basia's question. But she should absolutely ask her onc for his reasoning about her re-dx, especially based on your comment about staging guidelines having changed.
Here's a little chart I found for reference that shows nodes inside & outside the axillary system: http://classconnection.s3.amazonaws.com/177/flashcards/2614177/png/lymph1363975784618.png
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Thanks for this thread.
I have a new sternum pain but I'm not sure if it is from doing chest exercises with resistance bands. I had a scan not too long ago and it was perfect. Still, it makes me nervous. My next Onc appt is in July. If it worsens, I will move it up.
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my oncologist said stage 4 because that is how he classifies all recurrences. He said he would be remiss if he treated it as any lower stage. Also, my PCP said it may be for insurance purposes. The ins co cannot deny long term treatments if it's stage 4. Then I spoke to national cancer center rep, he said there is no official staging when it comes to recurrence, it is local, regional or distant recurrence.
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Hi Mariasnow yes, it certainly sounds like you have strained a muscle but you are right to watch it and if it persists longer than a couple of weeks I would try to move up your appointment. I seem to be the one to hold my docs back if I say a pain has been there a while.......the first thing they do is schedule a CT, just to see what's going on........I tell them all I wanted to do was have it noted......lol. Any new pain is always a worry but if we can link that pain to something we have been doing it should ease our minds. Hoping yours eases up quickly.
Love n hugs. Chrissy
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I have a question. My pathology report from my lumpectomy came back as possibly metastasized from a different tumor. Meaning it's possibly not breast cancer but a different cancer that metastasized to my breast.
Has this happened to anyone else?
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cenri I don't know if it has happened to anyone else but it always a possibility. Quite often you hear of a cancer being found but the one that has been found is not the original. This usually means a whole heap of searching to find out where it came from but there are some cases that the original is not found but identified from the tissue sample. Each different type of cancer has a distinctive profile so the path people will be looking to find out which sort as well.
Hope you get some solid answers soon.
Love n hugs. Chrissy
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cenri, I went for a second opinion when my original surgical pathology suggested that some of the bc cells in my 1 positive node did not match the cells in the breast lesion that had been removed, and that I must have an occult tumor. My second opinion medical team believed that the cells did all come from the same lesion, but with additional testing, they also found 2 lesions that had been left behind by my first surgeon (further explained on my bio page). My point is, you may want to get a second opinion on your pathology, because it's not always black & white, and two pathologists may not agree on the dx, or one pathologist or medical team may have more expertise in discerning unusual situations.
Good luck, and please keep us posted on what you learn. (((Hugs))), Deanna
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Anyone know if possible Stage 4 Mets to lymph nodes (referred to as lymphadenopathy in my report) is treatable compared to other mets? I am having Abdominal peritoneal lymph node Biopsied again on Thursday. Last one done three months ago came back non diagnostic.
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Karensusan mets to the lymph nodes is as treatable as mets anywhere else. Depending on your ER/PR status you will either have chemo or be put on one of the anti hormonals. All of these meds treat systemically and that includes lymph nodes.
Love n hugs. Chrissy
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my abdominal scan is scheduled for tomorrow. i am hopefully that since the pain comes and goes this will be a issue from the recon. so hopeful, you hang you hat any anything when you have cancer!0 -
Hi wonderful ladies, I am back with a question...what does liver pain or pain from liver mets feel like?
Mums liver mets are growing slowly but she hasn't been scanned for a while so I am not sure quite what is going on inside. I don't have a clue how big anything is. She doesn't know. She doesn't ask.
But today she told me she has had pain for a week. She described it as being like a very tight bandage around her ribcage. A bit like pressure from trapped wind, mostly on her right and worse at night when she stays more still. Her blood nurse (visits weekly) and Macmillan nurse suggested it was trapped wind due to chemo affecting her stomach, but they told her onc who called her. He didn't say much, just to take paracetamol if it hurts and he will see her in two weeks as previously planned (how much does he earn to say "take paracetamol"!?)
Mum isn't the sort of patient who wants to know details. She doesn't ask much. I wonder if the nurses wouldn't come out and say "it could be your liver, swollen" anyway....clearly it was enough to get the onc on the he phone..
What are your experiences ladies? Maybe it could be stomach issues?....as soon as I heard her say it was worse on the he right, and ribcage was mentioned my heart sank.
Scared tonight.
Xxx
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Hello everyone. I am sorry to hear about these friends dealing with metastases. I hope their journey is hopeful and as always I keep everyone in my heart who has to deal with this disgusting disease.
I am posting today with questions and concerns about a possible recurrence so here goes. I have been in remission of stage III breast cancer since May of last year. I went to see a new doctor (onc) because I moved and when he did his exam, I noticed some pain under my ribcage on the right side when he pressed down. He said, its a bit swollen, but I'm not worried about it. When ct/pet was done prior a fatty liver was noted.
Since then, the abdomen/liver is swollen enough that I can feel the size of it. In addition; I found a tender little lump just under my ribcage, below the original cancer. Also, I checked the nodes in my left armpit and they are swollen and painful. BC was right side, lymph pad removed, 5 positive nodes...
I am often fatigued and occasionally nauseous. My abdomen hurts and I am scared to death. Anyone have the same symptoms before a mets diagnosis?
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Hi Papillon 1. I am sorry that your mom has to go through all of this. I cannot offer an answer to the question, but I have been having the same symptoms so I understand your concern.
I will be checking this thread often so I hope we can both find some clarity on this issue. (((hugs)))
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Hi Papillon, it is very possible that the pains your mum is feeling are trapped wind pains or your mums liver reacting to the meds she is taking as well as progression of her mets........there are always more than one answer to why a pain shows up. Seeing as how her doc is seeing her in two weeks and the pain is at present manageable I would try to take a deep breath and hope that your mums visit will give you the answers you are looking for. Keep in mind that if her pain worsens you can always ring her doc and request an earlier appointment. Keeping my fingers crossed for her and sending (((((hugs))))) for you.
MrsKimber the symptoms you are describing can be from a fatty liver and the fatigue and nausea can also be from a fatty liver. Even though your new doc says he's not worried, for your peace of mind I would ask for a CT so you can see what's happening.
I know you are in two minds, wanting to know but being really frightened of what the answer might be.....this is very normal but in all honesty, it is really better to know. Worrying over something that hasn't happened can rob us of the joy that is around us so it is better to get that peace of mind or know the worst so you can deal with it.
Hoping you both can get some peace of mind.
Love n hugs. Chrissy
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