If you are not Stage IV but have questions, you may post here
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I was recently dx with a local recurrence and have my 4/6 TC tomorrow. My first dx was ER+ grade 2 but my recurrence is TN and grade 3 (it's been confirmed a local recurrence of precious BC by UofM, as my previous cancer was 50% ER+). I have not yet been given any sort of Stage except S1 with recurrence.
Anyhoo....my MO ordered a CT scan prior to treatment to determine size of tumor. The report notes a "significant" lesion on my left lower lung (I'm left-side dx) that needs further evaluation and cannot be ruled out as mets. Additionally, the CT found enlarged hilar and mediastinal lymph nodes that both require further evaluation. Instead, my MO dismissed them all and said "not to worry." When I pushed he said, in essence, we'd wait until after chemo is completed and redo the CT scan. If the lesions are gone he'll assume they were Mets and my stage will change. If they're the same we'll know they're not cancer-related.
In the meantime I'm trying to plan my UMX for a month after chemo ends. Hoping for DIEP, which is a big surgery. However - if (and it's still a big IF) it's determined there's already been mets, would I need the surgery? I keep trying to bring up a rescan and my MO just doesn't want to discuss it (all the while the radiology clinic keeps sending me letters saying I need to pursue further evaluation). I can't figure out if this is something I should really push for and be worried about, or if I should just let it go? I don't want to do surgery if I don't need to. I feel like I need to confront my MO tomorrow before chemo and demand another rescan but not sure how pushy to be. What bothers me the most is, if these are mets and they gave ER receptors I could give Tamoxifen a shot, but without biopsy I can't know that and If the lesions disappear then there's nothing to test...
Thanks for any thoughts you may have.0 -
Wow, Nancy, what a tough spot to be in. I'm so sorry. But I have to compliment you on your very thorough grasp of the situation, and your great questions!
I think in this situation, I would maybe slow up a bit on having a specific timeframe in mind for your umx and recon. I'm not suggesting that only b'cuz of the question about the lung lesion, but a month out from TCx6 seems like it might be a bit soon to be sure you'll feel strong enough to go through a Diep recon surgery. Plus you said "hoping for Diep recon," which makes me wonder if there are more questions about it that need to be vetted prior to a final decision -- although perhaps it's just this new question mark about the lung lesion. At any rate, assuming you don't have a wedding or trip of other big thing you're trying to be finished in time for, if you take the one month post-chemo deadline out of the equation, it seems like that would slow things down a bit and take away the pressure of feeling you need to figure everything out so quickly, so you would be more comfortable with your onc's recommendations, which sound very sensible to me. One step at a time basically, in which there is much wisdom.
As far as IF you'll need the umx IF the lung lesion is found to be metastatic... In the past and today to some degree, many oncs and medical teams would say no -- once your bc has metastasized, having an mx is not going to make a difference and could delay needed tx. But IF it is mbc, and IF you were to have a complete response to the chemo, and IF the surgery and healing wouldn't delay whatever is recommended next, then I think some medical teams might be open to proceeding with surgery.
As far as knowing the receptor status of the lung lesion, I think that's an excellent question for your onc. I'm guessing doing a lung biopsy while you're on chemo if he doesn't have to is the preferred choice in a less than perfect situation.
Hope this helps some! Please keep us posted on any updates. In the meantime, I'm going to hope & pray this is NOT mbc, and that you will be able to follow through in good time with your umx & Diep! (((Hugs))) Deanna
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Nancy, I agree with Deanna says. In addition, there's always ye olde second opinion. Take the scans to another doc and ask what they think.
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Thank you, Deanna and Pam - I really appreciate your feedback. Pam, UofM was my second opinion. They didn't seem terribly concerns with the lymph nodes, but did encourage further imaging on the lung scan.
Deanna, you make very valid points about the surgery and timing. I have to have the mx because of my previous radiation - no option for that this time. So while the mx is preventative, I did not have a true lumpectomy this time around, and I did come away with one dirty margin. Additionally, I'm getting the impression from conversations (I know, never assume anything...) that perhaps the concern is my cancer is chemo-resistant, since it survived previous chemo and radiation to grow back better, strong, faster than before. So my MO and surgeon are recommending mx as soon as possible, and so far the PS has indicated that four weeks would be "typical" timing. But I realize that can change depending on so many factors.
Honestly, recon is the last thing on my mind. Knowing what's going on with this cancer is my primary interest right now. My challenge is that the radiologist - whose job it is to read scans - wants further imaging, yet my MO doesn't seem to think it's necessary. I've decided that I'm going to at least bring it up tomorrow and ask what his plan is, so I have an idea what's to come. Hopefully it will involve a deeper conversation - but I'm not holding my breath.
I appreciate the good thoughts and well wishes. My hope is this isn't MBC, but I'm prepared to have that conversation if/when it comes to that. Thank you again for creating a safe space for us to ask these kinds of questions, as we try to figure all this out.
Blessings and light to all,
Nancy
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Met with my MO this morning prior to chemo, and asked about the CT. He said he intended to schedule it for shortly after my final chemo, but then realized we wouldn't be seeing each other again to discuss the results and it was "important we do that" so he will schedule it after my next chemo instead. Then we'll connect before my final chemo to review the findings, although he knows I will already have the report in hand by then. :-) He asked about my upcoming surgery; when I mentioned that the results of the CT may change my plans he agreed that was a "possibility", but if things go forward he would expect surgery 3-4 weeks PFC. He says I'm handling chemo well and doesn't see a reason to delay surgery.
My nurse navigator stopped by my infusion suite and we chatted about the CT. I mentioned wishing I knew the hormone status (if indeed these are mets) as my previous cancer had some ER receptors and she said, "The conversation is that these are mets from your current cancer, not your previous cancer, so they're not concerned about hormone receptors at this point." Which would help explain why no biopsy of whatever is there, if they believe this is TN, and Tamoxifen or AIs aren't going to help. I had a CT two years ago for something unrelated, but none of these findings appeared at that time, so that train of thought makes even more sense.
So - I'll know more in about 4 weeks. But at least we had The Conversation to get the ball rolling.
Thanks again!
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Hi, Nancy ~ Thanks so much for updating us. I'm glad you got some of your questions answered today, and that your MO thinks it's entirely reasonable to still aim for surgery soon after you finish chemo. I so hope it all works out that way for you! Deanna
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Hello ladies. Thank you for your advice the other day regarding my MRI without contrast. Got the results today - neg for mets! Yay! There were signs of degenerative disc disease, but no mets. So, here I am not feeling as relieved as I should be. For one thing, I'm still in pain. Second, maybe I was in a little denial and wasn't as scared as I might've been. Third, though, is I'm not sure if I should consider this test conclusive. I don't know how significant the contrast issue is. And we all know that bc mets can sneak past any imaging test. All of this adds up to my feeling that there's more to this to explore. What do y'all think?
Whitney
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Hi, Whitney ~ Well, that's great that they didn't see anything suspicious for mets! I have a couple of follow up questions/thoughts. (1) You mentioned they saw "signs of degenerative disc disease?" Did your PCP think those "signs" were significant enough to be causing your pain? Are they in the same area as your pain? If yes to both, it seems like that should ease your mind a lot. And (2) What, if anything, did they suggest to treat that condition, assuming your pain is from that? Did they suggest anything to build your bones, such as maybe Xgeva or Prolia or other bone building drug?
My only other thought is -- if you're not comfortable w/what you've been told and/or recommendations for the pain, and especially if the pain worsens, absolutely get a second opinion. A vague explanation is never satisfying. Be sure that you get a specific dx and a plan to treat it, hopefully with a reasonable time frame to expect results. Otherwise, I encourage a second opinion at some point to further ease your mind.
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I was wondering if someone could tell me if liver mets can cause abdominal pain. The pain is mostly in my lower tummy, but I feel occasional pain on my right side. The pain is very bad today, but again it is mostly in my lower stomach. The reason I worry about liver is that I've had slightly elevated enzymes and I'm going in a couple of weeks for a follow up scan, the previous scan showed a cyst.
Anyway, just looking for any reason to tell myself i'm being ridiculous, but at the same time I kinda want to go to the ER because it is quite painful.
thx
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Any abdominal pain that makes you wonder 'maybe I should go to the ER' is probably worthy of a trip to the ER! I don't have any experience with liver mets but I'm a PA and I've seen lots of reasons for abdominal pain that can be life threatening. If your PCP or MO can't see you in the office today, I would go to the ER if the pain is that bad.
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Thanks Deanna. Of course, it was my GP's nurse who called me with the results, so I didn't get answers to any of those questions. She couldn't even tell me where those signs of degenerative disease were or how extensive or severe. All she said was, "Dr. Born says to watch it for a while, and if you need to, you can see an orthopedist." So I said, "Well, this pain has been here for at least three months and is getting worse not better." So she said, "Oh, well then maybe you should see someone now. I can give you the number of the ortho's we refer to." That was it. As far as the location, as I said, she couldn't tell me, but I'm a little iffy about it anyway, because the pain is not directly on my spine. It's to the right in the sacroiliac area. So not (I don't think) where a disc would be. You know how hard it can be sometimes to pin down the location of pain, but this doesn't feel like it's on my spine.
One thing all of this has made me do - and I should have done it long ago - is make an appointment with an MO. I haven't seen my MO for a few years at least, and I wasn't his biggest fan then, so I made an appointment with someone new on Friday. Hopefully he can help me either settle this or feel settled about it.
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I forgot. I had another question. My initial diagnosis was in 2010 and treatment followed. But about a year ago, my annual mammogram showed "architectural distortions." I went to my BS, who did not think a biopsy was necessary. I didn't feel settled with that, so I got a second opinion. She was an MO, and she agreed with my BS. But on the report, the radiologist had said that further investigation was advised. So I kept pushing, ended up talking to two oncologists, three radiologists and my GP, my GP being the only one who thought a biopsy was called for. Everybody else said no. So I went back to my BS and told her that I didn't feels comfortable, and that I was thinking about having a prophylactic BMX. Oh, this was on the other breast, by the way, from my initial cancer. So she did the BMX, and told me afterward that they had found extensive DCIS, what she called pre-cancer. I was pretty fed up with her by that time and didn't ask a lot of questions, which is not like me at all! There was a lot going on in my life right then, including a few other serious medical problems, so I just kind of let it slide by. My question is this: would that have been considered a recurrence (local?)? Would that change my stage at all? I feel silly that I don't know those basic things about my own cancer, but there it is.
Thank you to anybody who can weigh in on this.
Whitney
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Whitney, your experience in 2015 would technically be considered a contralateral bc -- not a recurrence.
Re-establishing a relationship with an MO makes perfect sense. I'm glad you were able to find a different one, and I hope she'll be a good match to reassure you. You've probably already thought of it, but be sure to get a copy of your recent imaging and report to take with you, as well as copies of both previous pathology reports, so that she'll be up to speed on your situation.
Good luck! I hope she can reassure you. I'll be thinking of you and watching for an update! Deanna
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As far as the location, as I said, she couldn't tell me, but I'm a little iffy about it anyway, because the pain is not directly on my spine. It's to the right in the sacroiliac area. So not (I don't think) where a disc would be. You know how hard it can be sometimes to pin down the location of pain, but this doesn't feel like it's on my spine.
wherria: with degenerative disc disease,, the disc starts collapsing and pressure is put on nerves, so it makes sense that you feel the pain, not in your spine,, but wherever that particular nerve runs to. I have it in my neck,, and I rarely have pain in my neck,, but I do have it running down my arm and in my shoulder area. It is possible with DDD that you might feel it in your back,,but also really 'normal' to feel it elsewhere. Can you get a copy of your MRI report? That would should tell you the level of the disc issue.
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Thanks Deanna. I think I will feel better all around once I have an MO on board again.
Glennie, thank you for the info. One of the reasons I still feel unsettled is that the pain does not feel like nerve pain. It feels like bone pain, like the pain I used to get in my shins and hips when they were still giving me Neulasta. Is your DDD pain like that, or is it more like shooting pain?
Thanks again to you both.
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mine is more the shooting, nerve pain type. I never had Neulasta, so I can't really compare it to that. Is your pain more of an achy type? I do hope you get some answers soon. ((hugs))
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Glennie, yes, mine is an ache, a deep ache. As it happens, I am scheduled for my annual DEXA scan today. Maybe that will bring answers. Thanks so much for the support!
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If you are still concerned that this is a bone issue, do speak to your onc about a bone scan (different from a DEXA scan). I had what I thought was rib pain and asked about an x-ray. My onc indicated that he feels a bone scan is the best way to look for bone mets. They inject a radioactive substance into your vein, you sit around a while (I think I went to the cafeteria and had lunch), then return, and slide through a donut-shaped scanner. The result is a whole-body view, both front and back, with black spots where you have mets or arthritis. My scan was peppered with black blots, and I was terrified, but they all turned out to be arthritis. Strangely, the arthritis was in every place that I did not hurt. The radiologist and onc agreed that my rib issue was actually due to a little arthritis where my rib meets my spine. Big relief (except for finding out that I am not, after all, immune to arthritis)!
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I'm off to get my first DEXA scan right now...I thought it only shows if you have osteoporosis. Does it show anything else
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I'm pretty sure it just shows bone density.
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okay, thank you, Brookside
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My mom is HER2+ and recently diagnosed with liver mets after being NED for about a year and a half. She is now on herceptin/perjeta. Anyone have good results on liver mets with a targeted therapy
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DLB, Deanna, I only saw now that you posted a response to my query back in March. Thanks for your answer.
To update, the first chemo did nothing and in fact there was major progression during those 6 weeks, meaning the addition of multiple liver mets. DH has just completed 8 weekly taxols, with some difficulty. We now wait for more scans to see if that did anything. The onc told me, not dh, about 2 months ago that he thinks it will be 6-12 months. It is a cancer that is notorious for being chemo resistant.
Meanwhile, I have no info or access concerning our finances, among other problems. There is no list of key phone numbers, no list of access codes to bank accounts, phones etc.
I have tried to bring up the subject, but it is really hard. Any tips or helpful advice?
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Momine, I can't tell you how sorry I am about your DH's dx and the fact that his first chemo regimen wasn't successful. I will pray that Taxol has proved much more beneficial, and I will be watching for good news from his scans.
I don't recall where you're located, but I'm wondering if you've sought out the top expert(s) on his particular type of cancer, as I'm thinking they would be most up on any new txs or trials. I just know from my own experience and that of friends with other health issues that the right doctors can make a difference.
As far as your finances, are you sure he doesn't maybe have everything in a file somewhere in the event you should need to step in, even temporarily? I don't really know what's best in your situation, but I think I would just express to him that thinking about what could happen if you were ever put in a position of not being able to access those accounts in an emergency is extremely stressing for you, and that sharing the information with you isn't going to hasten his illness.
Hopefully others here may have more input! (((Hugs))) and just know I will be thinking of you and praying for your hubby. Deanna
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Deanna, thanks for your answer. We have access to very good doctors. But the cancer is rare and studies are scarce. I have expressed to him what you suggest, but to little avail. I am working on getting a friend of his to talk to him, so hopefully that may get us somewhere.
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please I need information about not so expensive breast cancer treatment in USA my wife has been diagnosed breast cancer and treatment here in Perú is not good, please send me information we are desperate.
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Hugo -
My US doctors found a tumor in my breast in December of 2015 by mammogram, 3 days before i planned to leave on vacation to Peru. I decided to go to Lima and continue the diagnostics in Lima. I was so worried. I couldn't enjoy my vacation unless I was doing something to understand better what was going on. I went through the whole diagnostics process and got a treatment plan from Aliada Contra El Cancer. I saw Dr. Felix Cisnero Guerrero for imaging. I saw Silvia Falcón Lizaraso for oncology.
In the US, I have good insurance and access to the best care. The oncologist here re-did all the testing that was done in peru and gave me her treatment plan. As a result, I may be one of the few people with breast cancer who can directly compare the peru system and the best of the US system.
They are different. There were small issues that I can discuss with you further. But Aliada Contra El Cancer works with Johns Hopkins University, one of the best cancer treatment centers in the US. They follow the same treatment protocols. In addition, Aliada is associated with European hospitals and research. The US system is good, but it can be narrow minded. There are treatments that might work that doctors here are not allowed to consider. Aliada has access to both the US treatments and the European treatments.
The biggest difference is that here I have access to Ibrance, which is a new targeted therapy. Its just not available in Peru. But most of the treatment protocols available here are available in Peru. The treatment protocols Dra Falcom recommended were very solid well tested protocols that cure many people. I will pursue the protocols that Dr. Falcon recommended if this new treatment does not work for me.
You certainly will not find the care that Aliada Contra El Cancer provides here in the US at the price you pay in Peru.
If I did not have insurance, or I was not estadounidense, I would not hesitate to go to Peru for my care. Money is an issue. So is culture and language. You have to take everything into account and put yourself in the strongest overall position. I suspect you are by far in the strongest position seeking care in Peru.
At the same time you can follow these boards and compare the advice and treatment options you are being offered just to be sure. Please feel free to send me a private message (hablo español) if you want to share more details with me and discuss this further.
Dra Falcon was the first person who told me with confidence that I had a lot of hope. I hope that you have a chance to meet her because she is remarkable and she is right. But you need to hear it from her.
>Z<
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BosumBlues, I have had quick-onset, severe pain in several areas but they were never mets. I do have mets to my rib and it's occasionally painful (usually like a bruise, though at times a bit worse). However, it was never bad enough to even tell the dr about, and my mets were found while scanning for other issues in other areas. I wouldn't assume the pain is mets, but if it doesn't subside or you have chronic pain in other areas, I'd get it checked out.
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bosumblues
So sorry for your worries. I hope your concerns do not turn out to be mets. My bone mets have been tricky. My hip and pelvis mets followed the rules: progressive pain worse at night and rest. My rib met did not follow the rules: worse with movement and sharp pain that would come and go. So if you are worried check it out. What I have learned on this thread is that each person and each met is very individualized. I wish you peace.
Mary
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Hi All,
I'm not dx'd with Stage IV, but very worried that it might be. I had a bilateral mastectomy on 5/18. And, follow-up appt. with the BS on 5/25. Dx is now Grade 3 (when it was previously thought to be Grade 2). And, tumor was 6.5 cm (large!). The sentinel lymph node is not only positive, but has "extracapsular extension".
I'm having an axillary lymph node dissection on Tuesday - to dig out more bad nodes and biopsy them. (I'm still not sure why the BS did not do this during the mastectomy but maybe because of the reconstruction).
Anyway....so I'm in a very scary and sad place. And, am worried it might have already spread to other parts of my body because of the extracapsular extension. That part really freaks me out..
I sent my BS an email - asking if he could order a PET and/or CT scan for me because I want/need to know and this is so anxiety provoking because I feel like the news just keeps getting worse.
In the meantime, I was wondering if anyone here (who is Stage IV) can pleas tell me - if there are physical symptoms of mets??? I don't have any bone pain. But, I wouldn't be surprised at anything - at this point!
Let me know - what you think....
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