Things I never knew about breast cancer
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solfeo or others regarding the CTC test -- I may be rare, but I had mets in my liver with no circulating tumor cells found. We did try the test, but it wasn't a good indicator for me as it came back at 0. So, being positive or negative in that test is not a guarantee for anyone and should be seen as just one of many measures to possibly use.
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Can anyone tell me if they have been told that they have atypical lobular hyperplasia in the opposite breast, and what it means?
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Fe_Princess, I only know it's classified as 'pre malignant' lesion. I had it in my other breast over 25 years ago and eventually had cancer in that breast. (had lumpectomy and radiation, and was gone, no recurrence)
What are they saying to do about it?
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Fe, it is "pre-cancer." I also had it, along with LCIS, in the breast they all thought was perfectly healthy. My surgeon told me it was a good thing I insisted on having him lop both of them off while he was at it.
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Hi Momine, thanks for the reply. I did not even know it was there until I read through my Final Pathological Report. I just wonder if I should be worried or at least inform my current oncologist. I was diagnosed/had mastectomy in the states but I now live in Switzerland. I only had a single mastectomy because I though less was better. I am recovering from a SGAP surgery after my body rejected the implant. I had a mammogram before my surgery. I guess it does not show up. I also had a reduction on the right side.
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FE, Definitely bring it up. Perhaps in addition to mammography, they can do MRI. It needs to be closely followed
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Hi everyone, Another "Things I never knew about breast cancer" is how shocked I am to discover how many ladies have clear nodes and then get mets. I was told at the beginning that when the cancer spreads it goes to the lymph nodes first, namely the sentinel node. I guess that's the common route but like everything else with the sneaky cancer, sometimes it does something different. I am truly shocked how many early stage cancers with no node involvement end up with mets. Hope everyone is well out there. Love Muriel
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I learned that cancer is a genetic mutation, that noone knows what causes it (except the hereditary ones) and that while attitude, diet and exercise may help you get though life and treatments, there is very little evidence that they cause or prevent cancer.
I learned that every medical intervention comes with risks that are not always explained, that we have to ask a lot of questions and, stay vigilant, and be our advocates in the system.
I learned that many people are touched, directly or indirectly by cancer, but that a lot of misconceptions about cancer remain. I still know very little except about my particular type of breast cancer.
I learned that love rules and to fully live and experience the moment.
I learned the importance of community and sharing.
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Pipandor, that's an excellent summary that many here will agree with.
Today I leaned that scientists have just discovered that breast cancer uses cholesterol-based molecules to evade anti-hormone treatments and promote recurrence.
Read the article HERE.0 -
Muriel, just out of curiosity, is it the standard protocol in Australia that everyone with grade 2 IDC, regardless of stage, hormone/HER2 status, size or nodal involvement gets chemo? I remember reading from another Aussie woman that OncotypeDX is not standard “down under” the way it is here. Perhaps that’s why you think Stage 1A Luminal A women are “undertreated” in the U.S.?
Another thing I learned about bc: that radiation can cause neoplastic skin changes, even w/o irritation or peeling....and even where the beam would have “come out the other side” were we not lying on our backs on a hard table. I just had a “pre-melanoma” removed from my back at the precise spot one of the beams would have exited....and it wasn’t there in Dec.
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Hi ChiSandy, I really don't know if all ladies with grade 2 IDC get chemo. I was originally told I didn't need chemo but then the oncologist decided I should have it so I agreed. What I have noticed in these posts is that some ladies with higher grade cancers and higher stages do not always get chemo or radiation, only surgery and hormone treatment and that is a surprise to me. The OncotypeDX is not covered by Medicare so I guess a lot of ladies don't have one. I am still learning a lot about cancer that I didn't know before. Best wishes to you love Muriel
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I had stage 2, grade 3 BC and didn't have chemo or rads. My BS told me that if I was anything but ER/PR+ and HER- or I had positive nodes then I would need chemo or if the Oncotype test indicated chemo. Mine was 15 so no chemo. And I originally was going to do a lumpectomy which would require rads but an MRI showed lots of small calcifications in that breast so UMX it was which meant no rads. Mine was just surgery and Tamoxifen (so far).
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Thank you for sharing that article Traveltext. The research shows promise for the vast majority of breast cancers that are +ER. I hope the progress toward tailored and more effective treatments will continue.
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Traveltext, will ask my PCP about starting a statin (probably Crestor, since it’s the only effective one that doesn’t block letrozole’s enzymatic pathway). I expect an AI will have raised my LDL and triglycerides, so I went back to low-carb eating, which always normalized them w/o a statin (before bc, I gave up atorvastatin because of the muscle aches and raised fasting glucose/a1c, which soared into the prediabetic level). What I’m wondering is whether tumor cells use HDL-C as well to synthesize an estrogen analog, or just LDL-C. I have freak-of-nature HDL (high 80s/low 90s), which my mom also had but never developed bc.
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Hi Ladies, Its an interesting conversation. Here in Australia most ladies have radiation for BC after MX and lumpectomy. Some have chemo and some don't but radiation seems to be the norm. Best wishes Muriel
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Thanks so much for this information. The statins have been discussed for years concerning lowering the chance of mets. My cholesterol is going higher and higher. Thanks, ChiSandy as always great info on Crestor.
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Hello everyone,
I've been reading some of the posting on this board. You definitely learn a lot about this topic. One of the many things that I didn't know is how many people are effected by breast cancer, and before this happened I didn't think anyone in my family had dealt with this. After I started treatment my sister informed me that our father had told her that our grandmother had died from breast cancer. Talk about surprise and not knowing.
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In Australia, and every other country I've read about, men have a mastectomy, chemo and radiation followed by tamoxifen for at least five years (nearly all males are ER+ HR+ HER2-). In may case, the chemo preceded the surgery since I had skin involvement (very common since men don't have much breast tissue). Reconstruction is rarely offered and rarely requested. I have to say, all the men I've met with the disease are quick to show you their MX scar!
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Breast cancer can go from non-existent (clear mammogram) to invasive in 3 months!
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I thought I posted this the other day, but it didn't show up.
surprisingly enough, I didn't realise that beast cancer in young women was so uncommon! I knew that, like most cancers, it becomes more common with age, but I guess thanks to high profile Australians - Jane McGrath, Belinda Emmett and Kylie Minogue - as well as a beautiful friend of ours who died in her early forties, and breast awareness info that said to start self exams in your twenties, I knew it was a possibility.
I also knew to get straight to my doctor with my lump, thanks to our good friend who said maybe if she hadn't put it off for a few months it could have been treated earlier.
What I didn't know was how many different types of breast cancer there are, and that all types of cancer are different and treated differently! I also had no idea that surgery was the main line of defence, or that treatment would take the best part of the year, and that I will be living with a chronic illness for the rest of my life.
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Muriel I'm in Australia too. NSW. I had a mastectomy (very clean margins), chemo and an AI but no rads. I did consult with a Professor in Radiation Oncology but his recommendation was no radiation even though I had multi focal disease. He said he recommends rads for tumours larger than 5cm and although the combined size of my tumours was over 5cm he said he's not an "adder". Meaning he doesn't believe in adding them together. Individually, all of my tumours were under 5cm; so no rads.
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smurfette, thank you for that comment about your radiologist's opinion about multi focal ILC and no radiation. My journey has been in the gray area all the way through (initial tumour size 4.5 cm and never got clean margins). End result was a mx ( margin 0.05 cm).. And no radiation recommended. I have felt concerned about this in the past (no chemo either, just AI). I am reassured by your radiologist's comment. Thank you for sharing.
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I found out that there is no such thing as "Too young for Breast Cancer" when I was diagnosed at 27 years old. My pathologist was so shocked that he called my surgeon to confirm my date of birth because he thought there was an error.
I have since met women in their teens, 20s, and 30s with breast cancer. Unfortunately, BC in younger women tends to be more aggressive (triple negative) and higher grade. Additionally, because of the whole "you're too young mentality" younger women often experience a delay in diagnosis which leads to a cancer that is more advanced when it IS eventually diagnosed.
NO ONE should brush off breast issues because of their age, you're never too young for this disease
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Young women (those under 35) make up one percent of new cases. This is the same percentage as men, who are also not expected to get the disease and are therefore diagnosed at a more advanced stage when their prognosis is not so good. No one should brush off breast issues because of their gender.
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travel text....really interesting study. Aromatase inhibitors tend to increase cholesterol levels so this is pretty significant. I'm going to ask my doc at next visit. Thanks for sharing.
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Hi Smurfette26, Perhaps I should have said that its here in W.A that all of the ladies I know have had radiation. They appear to use the word 'Insurance'. Ladies are more likely to not have the chemo. That's another thing that has surprised me is how different the treatments are depends on where you live. Best wishes to you all. Love Muriel
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When I went to see my GP my lab results came back that my cholesterol and even my blood pressure had gone done. Dr. did say that possibly the tamoxifen had something to do with at least the cholesterol. I'm also on statin and there is a new study I think it claims that statin drugs will help with the side affects of tamoxifen?
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Hi everyone, Another thing that I have learn about breast cancer is a thing called paraneoplastic syndrome. Apparently its quite rare (but someone has to get it) and it strikes 60% of people before cancer and 40% after cancer. Basically its caused by the immune system attacking healthy cells as well as cancer cells and it can do more damage that the tumour !!! It can be very hard to diagnose as up to 40% of patients do not have anti-bodies (which can diagnose PNS). Some in the medical profession haven't even heard of it!!!! There are some ladies on these forums who have PNS. Breast cancer is one of the cancers which can get PNS. Be aware of any strange symptoms especially neurological. Hope everyone out there is doing well. Love Muriel
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Just a rant, I was diagnosed in 2007 at age 51. I had been having mammograms since age 30 and had even started digital mammograms. I even had a biopsy by a very famous breast surgeon 4 years prior. I continued to see him annually. Mammograms and ultra sounds did not catch my 2.2 cm IDC. I was so disappointed with my famous breast surgeon who wanted me to have recon but when I decided against it, never saw me or spoke to me again. Now I have an oncologist who did not know that Arimidex can cause higher cholesterol. He also doesn't even examine me when I see him. I have no faith in doctors and my motto is "paddle your own canoe."
I love this thread.
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Aug24, wow! Some doctors really suck. I have been known to yell and swear at my onc, but he still sees me
My surgeon does not do recon, just removal, and he told me repeatedly that he could give a rat's behind whether I get recon. If anything, he said, no recon makes it easier for him to keep a good eye on my chest for any signs of recurrence. However, both my surgeon and my onc warned me that the femara I am on might raise cholesterol. This meant I could take steps, like diet and exercise, to prevent that. So far it is working.0
