If you are not Stage IV but have questions, you may post here
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My sister was diagnosed 2 years ago with BC. At this time we also discovered she has a brca1 mutation. She had a lumpectomy and 7 lymph nodes removed. Because she has the genetic mutation, the doctors wanted to through the book at her. But she refused chemo and radiation and kept her breast. Which was a pretty bad idea considering hereditary cancers can be very aggressive. Now fast forward two years she said she feels great and still believes she dodged a bullet. Then in February she came home from traveling overseas and found a lump in her neck. She went to a doctor and sure enough her cancer was back and in her lymph nodes. The doctors were finally able to get her to do chemo and radiation but I fear it's too late. She told me she is stage IV but never mentioned if it's metastatic, which finally brings me to my question. Can you be stage IV without it being metastatic?
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The staging section of bc.org defines a "tumor of any size with spread to lymph nodes in or near the breast and to lymph nodes in or near the neck and above the collarbone (inoperable IIIC)." I think that until a few years ago this was considered stage IV, but now that is reserved for spread to bones or distant organs (liver, lungs, and/or brain, typically). It doesn't sound as if it makes any difference in treatment, but the name was changed to indicate that with aggressive treatment it might be curable. I hope things go well for her and for anyone in your family who is affected.
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cleigh, even if the doctors had "thrown the book" at your sister she very well might be dealing with this today. Or four years from now.
I wouldn't worry too much about the stage of the cancer. Normally it's curable or not curable. She has what they technically call a "regional recurrence". Depends on what a PET scan shows. When she says "Stage IV" it sounds like her doctors have told her that they don't think they can cure it.
If she's having trouble, suggest she come to the boards here. I wish her and all your family the best of luck.
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Hi ladies. I'm new to this forum. I have so many questions and concerns. My oncologist said she will just do blood tests now to check cancer markers. I'm so afraid of cancer coming back somewhere else that I'm wondering why I won't get full body scans, MRI's, etc. I had BMX so I don't know if I'll need mammograms or what!!! My lymph nodes were clear at the time of surgery. But ladies, every cough, every upset stomach, every headache Scares me. I start to think its spread! I'm trying not to let this type of thinking last too long, and I've come a long way, trust me. But I can't help but feel like I should be doing more as far as monitoring goes. Then again, maybe not. Maybe I can relax in knowing that my scans last year showed no cancer anywhere else. And that the surgeon woke me up and said the nodes were clear and just two were removed. Maybe I AM okay!!!! It's like I'm afraid to think that I'm cancer free. It's scarier to say that than say "I've got breast cancer!". Wow, this is crazy. I'm 1 year since diagnosis and having implant exchange on 7/25.
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Hi Budrfligal, having the thoughts and fears that you are having is perfectly normal at this stage. Once your exchange is done and you have healed you can really start to put all the cancer stuff behind you and begin to rebuild your life. Remember always that you have had the full treatment and you are being safeguarded by taking the Tamoxifen........you have done everything possible to be free and clear of the cancer.
No one has a crystal ball so no one can give guarantees that at some time in the future it won't come back but the likely hood of that is very low so try to get on with your life and enjoy every moment and remember, you had BC, it didn't have you.
Love n hugs. Chrissy
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Hi Ladies:
I was just dx with ILC age 68 ER+ HR - HEU-2. 13mm and another 9mm ( waiting on results from the MRI biopsy done last week). I am not stage IV but I am worried because of the possibility of spreading to the stomach. I have been having indigestion after my meals with a bit if burping. I was wondering if anyone could tell me symptoms they were having when they were dxd with stomach mets. My path report shows no lymphatic invasion.
It's all so frightening and I really hate to bother you with issue. I have tried searching the internet for clues but the info I found sounded like abdominal pain with regerutation. I mentioned it to my doctor but they discount this perhaps because I was just diagnosed. Any input would be helpful.
Thank you
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budrflligal, Chrissy gave you excellent information. I'd just like to add that getting scanned without any symptoms -- as we all wanted to have happen when we were where you are now -- doesn't make any sense for a couple of reasons. First, you would be getting a lot of unnecessary radiation, which can be a risk in itself. Secondly, if they did see something -- "a spot" -- somewhere, it might necessitate a totally unnecessary biopsy simply b'cuz of you bc hx, when it might well be B9 and never have caused a problem. I know it's hard to wrap your head around waiting for symptoms before scanning or doing other tests, but it really does make sense. And in my case, an increase in my TMs were 100% accurate at spotting a problem very early -- far better than x-rays, which twice missed any reason for the pain I was experiencing.
A good rule of thumb and pro-active plan is, if you have an unexplained pain that lasts for more than 3 weeks, that's the time to check in with your onc. Most normal aches and pains seem to disappear within that three week window. (((Hugs))) Deanna
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Joanne, while it certainly can happen, I think mets to the stomach from breast cancer is rare. And there are so many other possible reasons for the symptoms you're having, including maybe even stress.
I think it's totally normal when we are first dx'd to fear that every little ache or pain is cancer running rampant throughout our bodies. I know I certainly did. Are you taking any meds that could be causing the indigestion? And have you tried OTC remedies for it? I would definitely report it to your medical team, so that they can determine if it's something that needs follow up and hopefully alleviate your fear.
In the mean time, because your question is very specific (e.g. symptoms experienced by those have had stomach mets), rather than counting on your post being seen within this rather lengthy thread, you might want to start a new thread using "stomach mets symptoms" in the title for greater visibility.
Good luck, and please let us know what you find out. (((Hugs))) Deanna
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Chrissy and Dlb thank you!!!
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My abdominal scan came back clear (yay!) but it did catch a little uptake in the lumbar area. I'm hoping it's just a false positive, apparently it happens since CT scans are so sensative. I don't have any pain there so I'm hoping thats a good thing. They are going to compare the scans (had them at different hospitals) from last year to see. It's so small its unmeasurable. But I won't lie I'm worried bc I know it wasn't there last year. Still hopeful!
Has anyone else had false postiives from a scan?
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Jenjenl, CT scans are notorious for incidental findings. The medical profession calls them "incidentalomas". They're the cause of a lot of unnecessary health care spending because they need to be worked up.
So the answer is yes, there are a lot of false positives on CT.
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I was suggested to this thread and a few others by members of BCO. I am newly diagnosed with BC and feel alittle awkward posting here as I don’t’ know my stage, DX, etc.All I know at this point is that I have BC and I believe the term is ER+ (feeds off estrogen only). I am unsure of what else to ask. C adn it is ER2+. I have completed the MRI, and Bone Scan whic hwere clear. Now the real reason I am posting to this thread. The CT scan seems to be clear but shows something on my liver and the Drs to conduct another CT scan.The Drs indicate they are pretty sure it is a harmless hemangiona and probably nothing to worry about but they are being extra careful. Has anyone experienced this? As each of you know my thoughts are consumed with my DX but I am beginning to feel a peace if that makes since as the landscape has changed continuously over my last few short weeks since DX. I posted in Just Diagnosed my BC was found through a biopsy of the lymph node. I show no signs of tumor does anyone have any experience in this situation. Should the Drs already know the type of cancer from the pathology reports? If I don't have a tumor or does that need to wait until surgery. My follow-up CT scan is scheduled for Tuesday and my surgery is scheduled for 7/1 since they don't want to do surgery until the results of the CT are known. I greatly appreciate any thoughts, exprience, words of wisdom and hugs you could pass along.
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a great big and gentle long hug to you, head petting and shoulder patting included. sorry you are here, but glad you have found us. i hope your next scan is clear as a bell. the tumor may be really small, and in anycase, the drs will be able to fix you up. with er positivity, there are good medicines for that! you will know more soon, and can get to know your way around here in the meantime. all of you ladies were so smart! to have found BCO so quickly! i think i must have been in a state of shock, took me weeks and weeks to find every body here! more good ideas for you will be along any moment now. they havent given you any hint of a stage without further testing, right?
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Hi Ladyb and a big warm welcome to you! Sending warm gentle ((((((((hugs))))))) with a lot of shoulder squeezing and back patting thrown in for good measure. You are more than welcome to post on this thread anytime.
Once you have had your surgery you will find out more of what your dx is but knowing already that you are ER+ is a good thing as ER+ has a lot of options when it comes to treatments.
The docs never have the full pathology until after surgery so you are not being misinformed there. The CT's are known to show false positives sometimes so repeating the scan is a good thing. If there is cancer in your liver, and I'm not saying there is, it is quite common that surgery is delayed while treatment is given first and sometimes surgery is not done at all. The thinking on that is that the cancer has already escaped the breast so why remove it but there is also the thought that in removing the breast where the cancer started relieves the cancer load and so offers a better prognosis over all. Should your scan be positive you will need to discuss this point with your docs and if you want, push to have the surgery.........after all, it is your body and they are working for you.......never forget that little point.
Being at peace with all that is going is good and just taking a day at a time will stand you in good stead as that is the best way of getting through all of the testing and treatment.
Hoping you get good news on the scan and please do let us know the outcome.
Love n ((((((hugs)))))). Chrissy
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has anyone had an enlarged liver that doctors couldn't feel by a physical exam? Mum, whose liver mets were slowly growing last scan (about three months ago) has had this feeling of tightness under her ribs, mostly on the right, for some weeks. The doctor can't feel anything untoward but is sending her for scans. Dare I feel positive that he can't feel anything!?
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Papillon if the doc can't feel an enlargement of the liver it is possible that your mum has some trapped air or fluid in that area that is causing her to feel full there. Hoping the scans bring good news.
Love n hugs, Chrissy
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I am new to stage IV...and feel shy about posting even on if you are not stage iv...as the news that I am stage IV is still raw. I had a recent mammo that showed a new invasive cancer in my one remaining breast...stage 1a like before. So, I thought I would bite the dust and get the one remaining breast cut off. My oncologist decided after 2 1/2 years of negative scans to do a PET scan. I figure it was good for peace of mind. We were both shocked that the stage 1a cancer has spread to my lungs, bones and a spot in my liver. My situation is complex and she suggest a second opinion at a bigger hospital, tumor board. At first she said too late to do anything about the tumors, breast and all because I had 6 months to live. This is a lot to hear when you thought you were only stage 1a. I thought about going to Bicher Clinic in California. They do hyperthermia heat to cancer spots. My oncologist said the one in the lungs are too deep. I am about to see a lung specialist. I said I didn't want to just leave the breast tumor and she said I could do a lumpectomy. This is a strange place to be.
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Oh Hindsfeet, (((((((hugs))))))). It is so hard and usually shocking to your psych to hear that your cancer has spread ..........excuse my reaction here but your oncologist needs to go back to school and learn his job! How dare he be so negative about your condition?!! Please, for your healths sake and your life's sake, please go and get another opinion!
There are many women who have had many more tumours than you including lungs and brain but two years down the track are still here and still doing very well. I myself had the two year talk but here I am five years later living life to the fullest! It's never too late, while you have breath in your body there is always hope........go and get that second opinion and even a third if that's what it takes but please don't allow that oncologist to take your hope away!
Come and post here when ever you like or if you have a question or just want to talk........I know you are reeling right now and rightly so, so if I can help at all please allow me to.
With love and ((((((hugs))))))). Chrissy
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Hindsfeet, I'm totally with Chrissy on the second opinion -- preferably at an NCI-designated cancer center, where they will always be up on the latest research and tx options. While I am all for alternative tx, I would first want to be sure that more than one onc believes the spot on the lung is inoperable and can't possibly be treated with chemo.
As far as the Bicher Clinic, I'd never heard of it (and I live in So. Cal) until your post. I just took a quick peek at their website and found this claim: Effectiveness of the cancer treatment with hyperthermia offered at Bicher Cancer Institute for breast, head and neck, and prostate cancer was outlined in the summary of the paper published in the German Journal of Oncology: Complete response rates were 82% for breast patients, 88% for head and neck and 93% for prostate patients. I don't know, but it seems to me that if they could promise these results, we'd all know about it and everyone would be flocking to them. So while I wouldn't rule them out, I would definitely do some more due diligence in checking them out.
(((Hugs))) Deanna
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Yeah, i have never heard of that Bicher Clinic, either.
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hindsfeet,
It is always a shock to learn we have mbc, whether after years of dealing with bc or virtually from the start. I have followed your story since I joined bco and urge you not to be shy about finding support, advice and solace on the stage IV forums. We are in a leaky boat, but we somehow manage to stay afloat. I am thinking of you.
Caryn
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Hindsfeet, I'm so sorry you have to join us.
I third the idea of a second opinion. Please make an appointment at the nearest NCI cancer center to you, ASAP.
http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center
With luck you have lots of good options. I'm appalled that your oncologist said there was nothing to be done, particularly if you are chemo-naïve.
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I'm flying tomorrow morning to Bicher Clinic at least for a second opinion. We know of someone who was treated at Bicher dx stage IV who is now NED. I am torn to stay here or go, but looks like I'm going. There are pro's and con's to stay or go.
I had a good second appointment with my oncologist in regard to her treatment plan. She wanted to send me to a lung specialist for a biopsy of the explosive spot on the lung. It is my biggest concern. She believes it is too deep to do anything about it other than Herceptin and hormones. Bicher feels they can eradicate it. There are 3 or 4, I believe lymph nodes by the lung that are 2 + C each that lit up in the PET scan. I have felt the lymph nodes burn and pressure for sometime, but thought it was heart burn or something else. I have another 2 C spot in the lung that lit up. I have multiple bone mets in shoulder blade, left ribs, spine, neck, hip and femur. I couldn't believe all the spots.
Right now I have more questions than answers especially in regard to bone mets. I know a lot of the women here have far worse, and recovered. This is encouraging. At this point I can barely say, I'm stage IV.0 -
Hi All, normally metastases to stomach only comes from lobular breast cancer,not generally from any type of BC.
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Hi Hindsfeet, good luck at the Bicher Clinic I hope to does all that it promises for you. As far as your bone mets, the Herceptin and hormonals are good at getting them under control and even doing the same for your lung mets.
Please let us know how you get on. As for barely being able to say that you are stage IV , you will come to terms with it like when you learned you had cancer in the first place.........it's hard, it takes time but you will get there.
Love n hugs. Chrissy
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Well Hello my mets friend Chrissyb! Nice idea - this thread... and your just the lady to start it and be so helpful to others. I will be adding this to my fav's. Thanks again Chrissyb.Cathy
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Cathy, thank you for your kind words.
Love n hugs. Chrissy
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Hindsfeet, I have heard of the bicher clinic but I don't know too much about it. I don't know where you live but while you're in LA maybe you should consider getting another opinion from an oncologist out here, there are a lot of really good ones. I don't understand this 6 months to live stuff -- it seems like chemo would be worth a shot and sometimes it is incredibly effective. I know if it is in your brain a lot of the chemo won't go past the brain barrier but fortunately that at least isn't on the list. I am also floored that your oncologist would tell you that.I can't even imagine what you're going through right now .... please do keep us posted.
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yes, hinds, i agree with cypher. And there are an awful lot of stage four women who are readily maintained by aromatase inhibitors alone. wishing you the best. i gooled that man of the bicher clinic, and there are an awful lot of cases against him. maybe you could ask there to talk with some of the women who were sucessfully treated by him? i am just saying, that there are lots of other good options for stage four women, treatment centers in la, many not for profit.
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Hindsfeet,
Run, don't walk, to get a second opinion. After you go to the Bicher clinic, you may want to consider getting a 3rd opinion as well. Just FYI, my BC was discovered when I started to get shortness of breath, even though I was working out. My first lung x-ray looked like someone had shot silly string through my lungs. Prognosis was poor. My Onc didn't mention a specific time frame, but 2 years if I was lucky had been thrown out. I had 13 rounds of chemo which shrank all the lung tumors, and I've been on Tamoxifen and Aredia for the past 5 years which have kept things pretty much at bay, and I live a pretty normal life. This is a great place to come for support. Don't hesitate to ask questions, or just to share a rant or two. Best of luck to you.
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