If you are not Stage IV but have questions, you may post here
Comments
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So glad you are healing well, Scared67! It happened fast for me also. Are you going to do radiation also?
I just had a second surgery on Monday because of am infection. PS took out the TEs, washed me out and put in new TEs. I'm supposed to start radiation soon. I had chemo first.
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Hi Georgia, sorry you had to get new TE's put back in...how are you feeling?
Yeah...I will be doing radiation also...my breast tumor size was huge - at 6.5 cm! :-(
Then, hormonal therapy after that...for at least 5 years.
It's pretty overwhelming...
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Thanks Scared! Actually I am feeling much better now than prior to the surgery! It really is quite amazing. I was so uncomfortable, irritated (the breast incisions hurt) and just felt gross and now I feel so great! Thanks for asking!
Yes, it really is overwhelming. It's a long road. But hang in there...it is a lot but it is saving our lives!
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For someone way back that talked about not wanting a mastectomy because she wanted to continue doing yoga - have you considered not getting recon? I had a BMX 8 years ago and don't wear foobs (no bra!!!) and stay dead flat with my clothes. I'm in sales under the public eye and really don't give a hoot. Seriously. The arthritis in my back and neck is better without that load and I look slimmer too. Go figure.
Anyway, you don't HAVE to get recon just because you get a mastectomy!
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My mother-in-law was just diagnosed with Stage 3 IBC. She had a lung biopsy today as they noticed a few spots on her lungs, so they think it's likely this diagnosis will change to a Stage 4 diagnosis once confirmed. Because she is 80 years old, they said chemo is not an option and neither is surgery. Although 80, she is in very good health and still works everyday. Her cancer is treatable with hormone meds and they hope to get some relief and hold the cancer at bay this way. She did not ask the doctor today what survival rates are, but we are obviously concerned and would like to have some idea what lay ahead? Does anyone have experience with Stage 3/4 IBC that has not had chemo? She is actually OK with the treatment plan as she really did not want chemo or surgery. However, I want to know just what this means. She feels and looks great except for a swollen arm. Any feedback is appreciated. This is such a scary thing! We're praying that the medicines are effective for a long time!!!!!!!!!!!!
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dlb823: You seemed to be very informed so I replied to you because I don't know how to start a new post without replying to someone's. Can you help me with that? And with how to do the dx stuff everyone puts below their posts? If I know how to do those things then maybe my post will look more normal.
Thanks.
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Dear grandmaof3,
I read your messages on this thread as well as on the Stage IV thread. I'm not very computer savvy either, so I completely understand your confusion. I thought that I'd try to "talk" you through the process of entering your information:
After you log in, look at the top right of the screen. You'll see "My Profile". Click on it and it will pull up a page that has four areas for you to enter information: My Articles, My Diagnosis, My Treatment, and My Personal Information. Click on "My Diagnosis" and you'll see a list of questions about when you were first diagnosed, the nature of your diagnosis, etc., There are drop down boxes with choices of answers, as well as fill-in-the-blank responses. If you are not sure about a response, you can just click the choice indicating that you'd prefer not to answer, and it simply leaves that area blank. As you go through the responses, you'll be instructed to "go to next", or to "save and exit." After you've finished with the Diagnoses area, move on to Treatment, then to Personal Information. As you've already noticed, the information you entered and saved will be listed under your posts. However, I've seen many posts from ladies who choose not to share their information, so it isn't mandatory - just helpful to others to see your history.
I'm headed to bed right now, but will check back on this thread in the morning to see if you have trouble following my not-so-clear instructions!
I see that you've already received much good information and suggestions from many of the ladies on this forum. They will be such an incredible support system for you - regardless of your pending test results.
Best wishes to you,
Angela
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squirrely, I assume your mother-in-law is estrogen receptor (ER+) positive. In that case hormonal therapy is absolutely the normal ting to start with. It's must easier to take than chemo and works really well. I've been on [my first] hormone treatment for more than three years. Other ladies on this forum have been on hormonals for five, seven, more years.
The idea with mets is to have the best quality of life possible. I wish her (and you) the very best of luck.
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Angela
Thank you so much for the information. I did everything. We'll see if it works after I post this. I am just so scared of getting the x-ray for possible bone mets. I guess with me I never stop worrying about the other shoe dropping. Thanks again.
Okay, I had to go to settings and make the information public. I'll see if it works now.
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grandmaof3 ~ I just read your story on the Bone Mets thread, and I first want to tell you how sorry I am that you lost your husband at such a young age. I'm also sorry for the concern that's brought you here now. Unfortunately, as you probably realize -- and contrary to what your doctor told you -- there is no time limit on breast cancer reappearing. However, there are many possible explanations for back and rib pain, so I certainly wouldn't be overly worried at this point. But I do have a couple of concerns I wanted to share. First, I'm wondering why your doctor is suggesting x-rays rather than a PET or CT scan or even an MRI, all of which would show so much more than x-rays will. I'm also wondering -- without trying to flip back to the Bone Mets thread to see if you said if he's a PCP or an onc -- if your doc has done any blood work at all, which will often also give some clues if anything suspicous is going on. A CA27-29, for example, would tell you if your tumor markers are elevated. These are just things you might want to ask about because I'm not convinced an x-ray is going to give you or your doc sufficient information.
Please keep us posted! And I'm glad you've found BCO and were able to figure out the profile section. Deanna
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dlb823: Thank you for your post and your kind words. I have not been the same since my husband died. It absolutely destroyed me. My oncologist is the head of the Adjuvant Breast & Bowel Symposium at a major cancer center in a major city. It's at one of the nation's leading women's hospitals. I trust him. He told me that the most recent symposium he attended discussed the long term use of femara and arimidex. I was on femara for 10 years and asked him why not stay on it forever. One word: osteoporosis. It will cause it eventually if you're on it long enough. He said for those with more advanced breast cancer it can offer a 3% reduction in recurrence past the 10 years of use. But he didn't advise it for me (I already have osteopenia). He did say that femara and arimidex help prevent recurrence but don't affect metastasis so he knows that it can happen no matter how far out you are. I think he is just going with the odds that most mets happen sooner than 14 years.
Considering the severe and chronic back conditions that I have and the fact that I've had these pains prior to my breast cancer dx I am hoping for the best and that is very hard for someone like me who sees the glass perpetually half empty.
Thanks again for your reply and thoughts.
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Keg: Like you I had the band placed( in 2008). Worst decision I ever made. Not only did it not help with weight loss but I had to have all the fluid removed a year later due to a severe stuck episode. I suggest you get all the fluid removed from yours, too. If taking some fluid out helped then maybe you need to take more out. Your band could have slipped. Or maybe some erosion into the stomach. Maybe you need an upper GI done. These are just some suggestions I am throwing out there. Don't discount anything with the band. The bariatric surgeons don't seem to know much about breast cancer and the oncologists don't know much about gastric banding. Most doctors I see outside of my oncologist never heard of femara. I have learned the hard way to be your own advocate.
So talk to your bariatric surgeon about getting all the fluid taken out. I also wonder what having that band and port inside my body is doing. If it might trigger some autoimmune response. I don't know and I don't think anyone is looking at that. I just know that the lapband has fallen out of favor and isn't done very often. Allergan who made them has stopped making them.
Good luck to you and I hope you do well.
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Squirrly -
I was diagnosed in January with a hormone positive breast cancer which is not super aggressive. I got several opinions. No one recommended chemo as a first line treatment. It doesn't work well on sleepy cancers. Standard chemo kills all growing cells. If your cancer is slow growing the treatment attacks your whole body as much as it does the cancer, and the cancer just continues to mosy along after the treatment. Hormone suppression therapy, on the other hand, is generally effective for a while. It seemed odd to me that the harshest treatment was not the most effective, but that is in fact the case for ERPR+ metastatic breast cancer.
The problem is that the cancer can evolve so that it will grow in the absence of estrogen. We're all trying to figure out if we can delay that with surgery, exercise, targeted therapies, green tea and broccoli. When the hormone therapies stop working, there are options but it's not clear what to do. Lots of debate and discussion. Many people do well.
>Z<
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Zarovka-I just want to say you are pretty amazing. 😊Thank you for you for your posts.
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I prefer to try rainbows and unicorn farts, myself.....
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I agree with Georgia...Thank-You Z for being here!
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Barb -
May I ask where you get your unicorn farts?
>Z<
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From unicorns!! Where do you get yours?
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None of my unicorns suffer from flatulence. You are very fortunate.
>Z<
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Mine don't eat organic grass and it shows....or sounds, as the case may be.
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rofl
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I had a CT scan with both IV and oral contrast, chest and rib x-rays and blood work. All was normal, I am happy to report. Thank you all for your helpful comments and support. Best wishes to all of you.
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Great news, grandmaof3! I'm really happy for you! Thanks for taking the time to stop by and give us the good news. I'm sure our experience will be encouraging to others in the future! Be well! Deanna
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thanks Grandmaof3.
I have now seen a lung specialist. They are treating the cough and large lymph nodes separately. Having moved a few years back, my current doctors don't have my baseline scans. So I had to chase them up - and no large nodes in 2013ct. So these large nodes are something new and could be the band - I will ask. I suspect now that they have the baseline results - they will rescan and if still large they may biopsy. They are treating the cough as GERD - but looking through my results I see I have had a cough on and off now for a few years.
Also just had ultrasound on neck as large lump has developed over the last 6 months since I came off zoladex. There is a ROI on the scan - so I now wait anxiously to see what that is. Lump is in the cervical node chain area. Interesting my baseline scans in 2012 showed no hyperintemsities - whilst my latest brain MRI does. Onco back next week - so I will follow up as something is def not right. Thanks for the advice.
Ke
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Hi All,
Well...I had a CT scan and the RN said it was "fine" and "no evidence of mets".
BUT left out the part about the 6 mm NODULE noncalcified (which is bad according to Google)found in my right upper lung and that a 3 month follow-up CT is recommended.
My breast cancer was in my RIGHT breast, so knowing I have a lung nodule on the RIGHT side - to me is BAD news.
I am so angry right now....and it's after hours - so I sent my oncologist a couple of emails...
Just REALLY pissed that she told me that my scan was normal - - when I could be facing Stage IV. I'm ready to leave that medical group and go to another. It is just WRONG to not be forthcoming to patients!!!!!!!!
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Scared - I am so sorry you are going through this roller coaster. I could tell you my own story about my roller coaster, but basically CT scans pick up a lot of stuff that may or may not be cancer. If you don't have cancer or you hadn't had cancer, these things would generally be assumed to be benign. They are far more cautious with those who have had cancer, but these things are more than likely benign.
I am no expert in pulminary nodules, but I think these non-calcified nodules may fall into that ambiguous but likely benign group. Here's an article that may give you some perspective while you wait to talk to your oncologist. You may find the nurse gave you the main story, if not the whole story.
I don't like getting only part of the story, but the story is really complex. I always read the full report BEFORE I talk to the doctor for this reason. It's not something I can process in real time while talking to someone. It sometimes takes days or weeks, and conversations with 3-4 professionals before I full grasp what the report means with all of its uncertainties and judgements.
>Z<
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Thanks Z....and thanks for the article...it really helped.
Unfortunately, noncalcified - when it comes to pulmonary nodules - is not a good thing (from my googling) it's the ones that *are* calcified that *are* more likely to be benign.....and mine was, also, described as "groundglass" in appearance - that, also, sounds bad.
Ugh...I will be sure to read the full report next time before I believe a RN telling me that a scan is "fine" because I call that BS. Sorry....I'm just still so mad.....
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Scared - non calcified lesions in the lung can be cancerous, but how often?.... from the article
The malignancy rate of small nodules detected in smokers is likely less than 1 to 2%, and predictors of malignancy include semisolid appearance, diameter greater than or equal to 10 mm or persistent growth on greater than or equal to two CT scans.
It takes a while to process these reports. And we all get to do this 3-4 times a year! Welcome to the club. Whether or not this turns out to be cancer, you will be getting more scans. Nothing super unusual in the scan, the communication, the process or how you are feeling. We all do learn to manage how we receive the learn results in a way that works for us. Because it is so hard. Keep breathing.
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scared, having "something" show up on the R vs. L side after a R side bc is not a telling factor. I know it seems like it could be, but it's really not.
Also, as Z said, most people have artifacts in lungs that show up on scans and have absolutely nothing to do with cancer. They're just oddities from previous illnesses, such as pneumonia, and other benign things. In addition, different radiologists note and call out different things that sometimes are never mentioned again. Often these are termed indistinguishable vs. given a more definitive description, but that, too, can be very subjective. In other words, radiology is not black & white, and what is seen/noted depends a lot on the particular radiologist doing the report. Of course it's very disconcerting, but the number of times I've seen concerns like yours turn into nothing far outweigh the few times something more ominous actually turns up. By all means ask your onc about it, and if necessary take your imaging elsewhere for a second opinion. But try not to assume the worst from a few possibly poorly chosen words on a report.
I'm glad your bones were clear and the overall impression was no evidence of mets! Deanna
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Scared - I had the "ground glass" verbiage on one of my CT reports. And yes I freaked out. My MO talked me off the shelf & the CT 6 months later showed it had resolved. (read 'gone'). It's very hard for people who have had BC not to jump to conclusions with every test result. Hope your tests don't follow "dr. google's" notes. I make sure I'm always looking at info only from sites like Mayo Clinic or Sloan Kettering.
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