Things I never knew about breast cancer
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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 -
MRIs also do not always detect breast cancer.
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Hi everyone! Found out something new that I didn't know about cancer yesterday. Apparently when you have an MRI they set the filters to what they are looking for. If you have 'something' that isn't within that filter it wont show!!!! Here was I thinking that MRIs showed everything in fine detail. Yesterday I had an ultrasound which picked up something that the MRI missed only last week. Just keep learning more and more stuff that I didn't know. Best wishes to you all Muriel
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There's a good reason why your doctor might not have heard of a relationship between AIs and dyslipidemia (higher LDL and lower HDL): the research into it is still in its relative infancy. The universe of patients taking AIs who had their lipids monitored before starting and continue while on AIs is very, very small--most research that finds a connection finds it's “statistically insignificant." Patients were not controlled for preexisting dyslipidema vs. normolipidemia. It's also exceedingly difficult to find enough breast cancer patients willing to risk being randomized to placebo rather than standard-of-care, even though data becomes “unblinded" midway through the study and everyone is offered the conscious choice of AI vs. no AI. The few studies out there for which any conclusions can be drawn, therefore, are not just epidemiological rather than prospective double-blind: almost all of them involve either patients taking letrozole for metastatic breast cancer or those switching from tamoxifen for the remainder of their endocrine therapy. (Tamoxifen, however, has been found not to harmfully impact lipid levels and may in fact improve them. because its mechanism does not result in estrogen deficiency in the body, just impaired access by tumor cells' receptors. But it does significantly increase the risk of blood clots, even more so than oral contraceptives in non-smokers. Basically, how would you prefer your heart attack or stroke--from a thrombosis or from plaques breaking off and blocking an already-narrowed arterial lumen? Trick question, since cardiovascular disease sometimes kills suddenly and painlessly, even occasionally in one's sleep--whereas death from metastatic ER+ breast cancer is never swift and pleasant).
But preliminary anecdotal data--as my PCP confirms--does indicate that at least letrozole does raise LDL and lower HDL, at least nominally, although it has no effect on triglycerides or VLDLs. And within the past 20 years, research has emerged (I've attended several drug-company dinners on the subject) that it isn't so much the raw LDL and HDL numbers as it is cholesterol particle size. You want to have big fluffy HDL particles that mop up the LDL before it can mess up your arteries. And as to LDLs, bigger is better too, because smaller LDL particles act like buckshot on preexisting arterial-wall plaques that are “friable" (flaky, unstable) due to inflammation. Larger LDL particles can cause atherosclerosis that simply narrows the lumen via stable plaque thickening its interior walls: it will eventually impair blood flow to the point that heart muscle can become starved in spots--but that can be corrected via stenting, which compacts the stable plaque in the narrowed spots, enlarging the lumen (the empty space in the “pipe") so blood flows freely....and in worse cases, CABG (coronary artery bypass grafting--a la Bill Clinton or David Letterman) is performed successfully.
Unfortunately, not many labs yet measure particle size and it's a much more expensive blood test than a simple serum lipid panel, so it isn't yet standard-of-care. So unless you're lucky enough to be in a clinical trial of particle-size testing, better to play it safe and try to lower your LDL count and raise HDLs. (Unfortunately, one of the best ways to accomplish the latter is a no-no for ER+ breast cancer patients: a glass or two of red wine per day. The 3 glasses per week (at most) we're allowed is insufficient to raise HDL). The other part of the equation is the ratio of total cholesterol to HDL. You want it to be less than 5:1. (in other words, you want your total cholesterol to be less than 5x your HDL). Mine's 4.4--which is okay--but before letrozole (at least 3 years ago, my previous lipid panel) it was 3:1. Therefore, after my September Surgi-Fest we'll have the statin discussion. (Bob is gloating, “I told you so;" as a cardiologist he believes statins should practically be in the drinking water). My PCP is thinking perhaps rosuvastatin (generic Crestor, which works better with fewer side effects than atorvastatin--generic Lipitor--or older-generation statins) in a lower or periodic--2-3x/week--dose. I had been on atorvastatin 3 yrs ago but he took me off it when I reported quadriceps aches; however, I notice that if I sit with knees bent for too long, as in an arena or theater seat, or use too much resistance on a stationary bike after not having ridden for a while, I get the same quad aches--and I haven't touched a statin since March 2013. (IIRC, I first noticed that ache back then after a stationary bike ride).
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My life style has been exemplary: 70 minutes' strenuous exercise six days a week (for the past 40 years), a diet high in fruits and vegetable and low in fat and sodium, no alcohol, no cigarettes. I was almost never sick. Never took anything unnatural, e.g., sleeping pills, pain killers (I never had pains), hormone treatments, birth control pills, etc. My period started at 13 and stopped 56. My father lived to 98 and my mother 86. Their mothers and sisters all lived to the 90s.
So how is it possible that I got BC? But I did, when I was 66 yr and five mon old. My risk factor? I was never pregnant.
And it happened overnight. I actually was feeling great (hiked 5 miles and climbed 4500 ft in 2 1/2 hours back in April). I looked nice (since I stopped some snacks and lost three pounds). I ran 7.4 miles in an hour on the treadmill. The first two weeks after I discovered my lump, I was still feeling great. But after it was DXed, I began to feel all kinds of problems; sort throat, pressure on my eardrums, odd sensation on my saliva glands, liver ache, stomach ache. CT scan did find a liver cyst, two very small dots on my lungs, and a fibroid on my uterus.
If this could happen to me, it could happen to anyone. Now I should be grateful that I did not get BC when I was 30. Anything is possible. Don't be over confident because of your good genes or good life style. Your breasts are two boobie traps! I probably should have got mastectomy when I was 50. However, it's easier said than done. It's a drastic procedure. I would not like to lose my muscles from the mastectomy as I do enjoy running and weight lift.
Do self exam once a week. Spend 10 minutes and carefully feel every spot. I did not feel my lump first because it was fairly big (1.8 cm). But had I gone to the edge to feel, I probably would have noticed that it's a lump.
85% cancer patients have no family history. I'd like to know the percentage of cancer discovered by the women themselves. I'd think it's majority. My friend discovered a lump, yet mammogram still could not see it. Only MRI did.
The doctors tend to drag their feet. When I called my PCP, the receptionist said the first available appointment would be FOUR WEEKS away - and he had failed to detect my lump back in January!! It took three weeks to get an MRI (I had to go through mammogram, sonogram, and biopsy). And after that, they were going to schedule a lumpectomy a month later, and I begged to get it asap. They told me that cancer spreads very slowly. Really? Did they know for sure? Imagine waiting for two months to get a lumpectomy and three months to start chemo. The cancer could have metastasized.
I still keep my BC a secret. I work from home. I can pretty much hide. Yes. The small company I work for is self-insured and will see my bills soon. I am waiting to be fired, although I am a top performer, and by law they cannot do that. Medicare does not have an out of pocket limit. The treatment would cost me a lot more.
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Joan - all I can say is wow - and in a way you take the guilt off people who think something they did caused their cancer..
I agree with the problem of waiting for appointments - the anxiety that causes is something the professionals do not take into consideration.. however, if we have a doctor we really want to have as our doctor, we have to wait.. I know that for me, once the radiologist recommended biopsy, it took almost 5 stressful weeks for my appointment with the breast surgeon... Maybe I could have gotten an appointment with someone else quicker but this BS came with high recommendation and I chose to wait. It was a good choice for me and those 5 weeks were so hard for me ... once the cancer was confirmed though, everything moved quickly.
I hope you don't lose your job - yes, you might miss some time but overall it helps to keep working... and you are right, it is against the law to fire you for having cancer..
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IamNance- Five weeks! That's insane. I had to wait three weeks for my initial diagnostic mammogram, but I had it on a Friday, they recommended biopsy. I made an appointment back with my GP, but she ran first thing Monday morning and said drop in and pick up the forms because she didn't want me to have to wait not knowing, was able to get in that day. She called the next day with results, and I had an appointment with the breast surgeon later that week. My GP also gave me forms for staging scans as well, just in case there was a wait for the surgeon, I could get them done first.
Things moved very fast for me.
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i wanted to add something...things I never knew...how you have to be your own advocate, don't expect everyone on your medical team to understand breast cancer from A-Z - I have found most only understand their own discipline (surgical oncologists and surgery, medical oncologists and chemo/hormone therapy etc) we need to be our own advocates. I just had a good friend who is about to have breast surgery have a nurse tell her "you wont get lymphedema, and if you do come to us when you have swelling?????? OH MY. - she was kinda fighting me on it asking if I had more nodes removed etc - I only had 2 - I told her low risk isn't zero risk and once you have swelling it is something to manage forever and the best route is prevention
Frustrating
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Hi everyone. Am I understanding this study correctly? Is it saying that high cholesterol is bad for recurrence? Don't aromatase inhibitors tend to raise cholesterol? So frustrating to find yet another contradiction in standard treatments. How many MOs even know that high cholesterol is a SE? Happy for the study. Hope it makes a difference...
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Hi, dtad! What study are you referring to re: high cholesterol and recurrance? Is there a link to it? Many thanks!-JuniperCat
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