If you are not Stage IV but have questions, you may post here
Comments
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Hi Almasi. That's really good news on your mom and she has responded very well to her treatment.
I know of a lot of women who gave done likewise and who have just been using the Herceptin as a precautionary treatment just as I know a lot who have chosen to wait until the cancer returns. This choice is really your mom's choice.........she will have been given all the information and now she has to decide.
I know you want your mom around for as long as possible, and that's only natural but you must allow her to make this decision as it is she who must have the treatment......or not.
It is hard to watch someone you care deeply for make a choice that you may not agree with or want. Just love your mom and spend time with her no matter which choice she makes.
Love n hugs. Chrissy
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Hello, I was wondering if any of you were diagnosed with liver mets through blood work? My GGT is slightly over the normal range (all other enzymes are ok). First test was 36 U/l (which is the cut off), second test was 40 U/l. They are keeping an eye on it...next test in 6 weeks. They are assuring me that it's not mets but the same doctor assured me that my initial lump was just glandular...She also tried to reassure me by telling me that BC doesn't spread to the liver...wha?????
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chrissybThank you for your response. I 100% support my mom in what she chooses. Even when she was first diagnosed stage 4 I supported her when I thought she was going to opt out of chemo (thank God she did not) because I have watched her suffer through treatment so in as much as I want her around forever I don't want to watch her suffer.
I am weighing in because she asked me to because she knows I read a lot and know a lot about the disease and treatment. Ultimately I will respect her choice but I wanted to hear from women's experiences since there is not much data.
I do know if the cancer comes back it will take a miracle for her to do chemo again. So that's why I lean towards advising her to stick to herceptin because she has little to no side effects on it.
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I will be getting my lung biopsy results on Tuesday and that will determine if I have stage iv or not. As much as I really hoping the nodule in my lung is valley fever, I'm wanting to prepare for other news. What did you ask or wish you had asked when you got the news that you had stage iv breast cancer.
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So I have about 6 weeks to go before I get the CT to see if 6 mm lung nodule found back in mid-Oct is possibly a lung met or not. If it's still there, most likely not. If there, then possibly stage IV.
Of course my mind is mulling over the probability. I had BMX on 8/5. Tumor oddly shaped like a dumbbell, 7 cm total 2:00 position in left breast. Micromets found in sentinel node 1. I've read the most effective chemo time frame is 6-10 weeks post op, others say within 90 days. I couldn't start chemo until right on day 90 due to drains being in for 5 weeks and infection for a few weeks. So the effectiveness of it all is my concern.
I know no one here can say for sure, not even a doc, but would anyone in my shoes be thinking that it is a lung met because of the delay in chemo mainly? I mean I had micromets at sx time, in 3 months could it have travelled to the lung to form 6mm?
Just nervous as I sit here and wait for another 6 weeks...
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Artista, will they not biopsy the nodule? You're in an area with a high rate of valley fever, I hope you don't have to wait too long to find out what is on your lung.
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I know it's too small for a PET scan to pick up any metabolic activity. I assume it's problematic to biopsy. I think MO said wait and see primarily because I had setbacks that prevented me from getting in on chemo quicker, which gives best results. I'm right on the border of the max I've read, 90 days. There was a sense of rush to get me going already.
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Also, I'm having trouble figuring out the diff between micromets and just when people say 1 lymph node involved. Does micromets mean a little was found vs someone who has 1 node involved means more than a little I assume? I guess the "mets" part of it sounds worse to me. Why not micro amounts, why is mets at the end?
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I asked my BS last time - micromets means an area of cancer cells that is 2mm or less. I have macromets, the area in my one node was 3mm. Determined on your pathology report.
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oh ok, thanks!
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Hi Everyone, I have been reading a lots of information about this on the internet and I don't find an answer for this. I guess I just want to have some hope!
My aunt went to the doctor yesterday to do a mammogram because she was having pain in her breast for a long time ago. She is the type of person that will not go the doctors unless she feel like she need to. After the visit we found out that she have breast cancer stage IV. How can she know and be diagnosed with breast cancer stage IV without a biopsy? If this can be possible? Please Im so confuse and at the same time so sad and depress couldnt sleep last night thinking on this. My aunt is like my second mother this is very hard!!
Any information that you can provide will be greatly appreciate!
Sincerely,
Stephanie
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Stephanie, I'm so sorry about your Aunt's presumed diagnosis. I agree that it seems a bit questionable to get a diagnosis without a biopsy, but without knowing more details, it's hard to know. Perhaps what the radiologist saw was just so compelling, he felt confident giving the Stage IV bc diagnosis. But I would certainly find out from her exactly what was done, and what is the next step. And I would personally want a biopsy to be absolutely sure of what I was dealing with, and hopefully that is the next step.
Good luck to her, and please keep us posted! (((Hugs))) Deanna
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Hi Stephanie,
We echo Deanna's post -- please find out if there will be a biopsy done so that your aunt's doctors can determine treatment.
Welcome and please keep us posted on how she (and you) are coping!
--The Mods
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I don't post often, but visit regularly. I have recently had hip pain, soreness in ribs, and chest area where I had radiation. I've had ex-rays on hips and pelvis & NED. About three weeks ago I started having pain in my back that comes and goes. I could feel a little bumb on my spine, but took a lets wait and see how it goes. I went to see doctor on Thursday and she felt bump too, ordered X-ray which showed that i have a compression fracture to #1lumbar. No falls, no osteoporosis. I'm concerned that my cancer has returned. Bone scan is Monday and I'm scared. Severe anxiety that I'm taking meds for. I've been so positive and hardly ever think about cancer. Now this. Dr said as far as if she thinks it's cancer, she says 50/50. Don't know what to think. Anyone else been through this?0
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Hi Stephanie,
How shocking for your aunt and you to move so quickly from a pain in the breast to a Stage IV diagnosis.
I can imagine that the radiologist did a chest x-ray and perhaps found cancer in her lung?
Please keep supporting her however you can and recognize that she is a private person who shuns medical treatments for her own personal reasons. It may be hard to support her choices when they aren't ones you'd make yourself.
Stephanie, there's a forum here for caregivers that may also be helpful for you to share your feelings and finding out ways of coping and supporting your beloved aunt.
This is so hard!
love from another Stephanie!
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Wow!! Thank you all that respond to my message, I really appreciate all you guys words. She's actually really calm but I'm the one that is all sad and looking for solutions and answers. She's actually getting her biopsy tomorrow Tuesday. I will keep you all posted on the results. I still have hope that is not Stage IV...
Warm Regards,
Stephanie
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Stephanie,
What was said about stage IV? They would not say that unless they had a scan or a test that showed something definite. What did they say exactly?
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Hi Mamiya,
They did a Mammogram and sonomammogram the lymph nodes were enlarge and it looks like it spreading on the left side breast.
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Stephanie,
Mammo and sonogram can't diagnose, they need to do biopsies. At this point I would not think that you have enough information to jump to conclusions about stage IV, and I am surprised that a doctor would do so.
Let us know what happens after the biopsies.
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I have had BC three times. I have never heard that my cancer was inflammatory. My first recurrence was subcutaneous--I had lumps along the scar line and up my back-- and the next recurrence was in a lymph note on the opposite side. (I had the opposite removed with the first recurrence.) Now, I have a very itchy, red, bumpy rash on my chest and a spot starting on my neck. I went to the onc last week and I could tell she was concerned about the rash but she didn't say anything. But she did order a PET scan and bone scan that got scheduled right away.(My first time seeing this onc. Finally have one I like!) I have beem looking up skin mets on google but all I see are skin mets related to IBC. Could my bc have morphed into ibc? Is IBC the only type of breast cancer that spreads to the skin? I get the results on Wednesday but I am going nuts not knowing. Thank you for any information or experience you can share with me. I don't know exactly where to post this question.
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Oh, Stephanie, I am so sorry! Do not give up hope. There have been so many strides in breast cancer treatment. I will be thinking of you and your aunt and watching here for updates. Sometimes I think it is harder to watch someone you love go through this than it is to have it yourself.
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Hi Stephanie,
Since your aunt had a mammo and an ultrasound, not a chest x-ray, I wonder if she's been diagnosed with breast cancer metastatic to the lymph nodes under her arms. It could still be an earlier stage of breast cancer (Stage II or III).
Stage IV or metastatic disease is based on spread beyond the region into the bones, organs, internal lymph nodes or other regions of the body.
Your aunt is likely to be asked to have additional scans or tests to see if it has spread.
Of course, it's her choice to take the next steps and to share what she wants with you.
Stephanie, you can support her in so many ways!
I encourage you to support her to get care that's consistent with her needs and who she is.
You'll get a wide range of advice here, but the best treatments are the patients will do/undertake.
Stephanie, please take good care of yourself, while you're taking good care of your beloved aunt.
warmest wishes, Stephanie
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Yes, I was thinking the same thing. The words "lymph node metastasis," used to describe breast cancer that has traveled to lymph nodes near the breast (possibly stage ii or iii), is not the same thing as "metastatic breast cancer" that has traveled to distant sites (commonly called stage iv). I wish they wouldn't use the same term.
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Hi ladies, Can you please share what symptoms you had (or did not have) with your progression to stage 4? I am wondering which tests show if there is a spread or not. For example does a chest x ray show a lung metastitis? There seems to be so many types of testing, CT scans PET scans, ultra sounds, MRIs its all very confusing for ladies worrying about progression. Thanks, best wishes to you all love Muriel
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Hello Ladies;
First of all, lots of love to you all. Hate to bother you with potentially stupid crap but I trust your opinions over the docs. As you can see in my signature, lots of aggressive stage 3 cancer. I was/am in the Hopkins vaccine trial and as a result got full scans in August of 2015. Have radiation fibrosis and costochondritis from radiation. Last 4 weeks or so, much sharper and intense pain on lower right bottom rib area directly under the arm area. Onc not really into scanning again and doesn't seem concerned. I don't really want to scan either, but this pain is different. Am I being over anxious? Off to Hopkins next week for annual bloods, but Onc there is away so no second opinion there. They will do a check of tumor markers there.
Thanks in advance for your help and gentle hugs to you all.
Adele H.
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Hi, Adele ~ You know, my first thought when I read your post is to wonder if you've maybe developed some truncal lymphedema? That kind of painful swelling more often occurs in the arm on a surgical side, as I'm sure you know, but many of us have had it show up in the truncal area you're describing -- underarm, over ribs -- and it can be surprisingly painful. When mine flares, it's often because of heat from something like a hot bath or hot tub (which I no longer do for that reason), or just getting overheated on a hot day. One clue would be if there's any noticeable (compared to the other side) swelling detectable in that area. If you push gently on it, does it briefly leave an imprint, especially compared to the other side? Other than that, if you had a clear scan 6 mos ago and didn't have any pain at that time, it seems doubtful that mets could appear and also become that painful in such a short time.
So if by any chance it is truncal LE, you can find more info' on that here. I'm pretty sure there's an entire thread about it. Other than that -- and assuming your TMs turn out to be normal -- if the pain persists, maybe ask for a limited MRI of that area. No radiation w/that, and it would reveal if you possibly have a hairline fracture or other skeletal issue unrelated to bc.
Hope this helps. I'd also be interested in knowing more about the trial you're in. Is there a thread here about it? If not, can you tell us more? Deanna
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OK, this is an unpleasant question and apologies in advance. At what point in your stage IV DX process did your doctor outline prognosis, if at all? My husband was DXed stage IV (urothelial cancer, not breast, with mets to both lungs) back in November. So far he has had 2 chemo treatments and is scheduled for scans next week to see if it did anything, before they give him any more. The docs are fairly laid-back and jolly about the whole thing. DH seems to think he has many good years ahead and refuses to put his affairs in order, which has serious ramifications for me. I don't feel it is reasonable to leave it to me to explain to him what the prognosis is, and besides I do not have the necessary tools and knowledge to say much. I know, however, that this particular cancer is aggressive and the prognosis is typically very poor.
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Hi Momine,
While I don't have an answer to your prognosis question, I encourage you to go to www.smartpatients.com and join their kidney cancer group. The members are many, well informed and helpful to newcomers. I can't speak highly enough of the moderator Robin! She's pulled rabbits out of hats for me and many others.
blessings as you both deal with another cancer in your family, Stephanie
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Longterm, thanks for the resource. Thanks for replying. I hope you are comfortable and well cared for.
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Question for those who have mets to bones. I took Herceptin until the end of January and gave been on Arimidex since last fall. I have had a terrible time with my hands, not being able to make a fist, trigger fingers, pain, stiffness since I started Arimidex. I am sure this is either due to the Herceptin and Arimidex. But in mid December a new pain started in my wrist and lower arm. The doctor thinks this is due to the Arimidex and I certainly hope it is. However, I was wondering if bone mets can start in a joint and what it feels like. This is a pretty sharp pain that is aggravated by movement
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