Things I never knew about breast cancer
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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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Thank you so much, Traveltext!
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Hi everyone, Another thing I have learnt about BC is that the ladies with lower stages/grades need to be VERY observant and advocate for themselves. Far to many doctors and specialists keep telling you "Well you are worrying about nothing as you are a low risk" As we all know there are many ladies on this forum who started out with stage 1 and progressed to stage 4 Be vigilant but enjoy life every day!!! Best wishes to you all Love Muriel
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Thanks Murial, so do the gentlemen with lower bc grades/stages.
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Hi Traveltext, Sorry I didn't mention the male populations who develop breast cancer. All the best to you. I have had fun doing this post!! Best wishes Muriel
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This is a fantastic thread Muriel, good on you for starting it.
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This is such a good thread. I didn't know that ongoing pain could be an indicator of mets. I also didn't know that 2 different radiologist would say different things. I still don't know if I have mets but hope to find out on Monday. I also learned that these boards are a source of great comfort. I went through my breast cancer reading these boards. Not posting very much. And eventually stopped even reading them. Everything went so fast and relatively easy for me. I think I thought I didn't belong anymore. Now I am faced with possible mets and I find myself back here reading and trying to reach out to people again. There is so much knowledge here and so many people that genuinely care. I think I was probably a little too selfish my first go around and being faced with it again (possibly) I find myself turning back to the same boards that helped me so much the first time.
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Hi Everyone out there Thought I would breath some life back into this subject as quite a few people quite liked it. Thought it would be better to say something rather than just say BUMP. Hope everyone out there is doing well. Best wishes Muriel
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Good idea Muriel.
I never knew that 28% of men who get breast cancer go on to develop prostate cancer as a second primary.
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Hi TravelText, I didn't know that either!!! We are so clueless when we start with this 'journey/nightmare/or whatever! 2 I am still not good myself, have had neurological symptoms since last March 2016. Still don't know if its to do with breast cancer or something else. Went from a very fit person to one who shuffles along with a walking frame and disabled sticker!! See my fourth Neurologist at the end of May and hoping for some answers. All the best to all of you out there. Muriel
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Murial, it's a great shame that you have suffered lost mobility. I've never heard of this in relation to Stage 1 BC. Let us know what your latest Neurologist thinks the problem is.
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I'm sorry too that you are still having problems, Muriel. I remember you mentioned it when the thread was previously active.
Wishing you good luck and great doctors!
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My dad had prostate cancer. He had one dose of chemo and lost his ability to walk. He gave up after that. That was one of the reasons I chose not to do chemo with a stage on breast cancer even though it was grade 3. All but one of my cancer DR's supported my decision. The one that did not was the primary MO. I fired him. Cancer is such a tough disease to know what is the best treatment option for our situation.
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Hi Brutersmom, Solteo and Traveltext, Thank you for your replies. My problem may or may not be related to my BC, trouble is no one seems to know!!! Very frustrating and I am hoping for some news at the end of the month after seeing the Neurologist. I will post again there with any news/outcomes. Best wishes to you all Muriel
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Well I have mentioned this before, but after what I have just been through I have to reiterate: I had no idea that having my breasts removed wouldn't eliminate the benign breast problems I dealt with my entire life before I received my BC DX. I chose BMX because I didn't want to be on the biopsy table every other month trying to figure out if this lump or that is anything "serious."
I just had another lump on my chest wall, that took a month to find out it is merely a cyst, because of doctors on summer vacations (unpleasant deja vu of when I was diagnosed at the same time of summer two years ago).
Not only do I have very little breast tissue remaining, but I am also recently menopausal, which should have put an end to the cyst problem. The cyst is also in the exact same place as the cancer was, so of course it scared the crap out of me. Thank goodness the radiologist could tell for certain by looking at it in the US, because I couldn't get in to see the BS for follow-up until September 19th. Can you imagine waiting that long with a possible recurrence?
This is the 2nd time a cyst has been found post-BMX. I guess I won't worry too much next time, if I can help it, until I know for sure what it is, but the waiting I have to go through where I live is torture. I need to move.0 -
Bum
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Hope you are OK Muriel. It's not like you not to keep up on this thread. Let us know if you can!
Best,
solfeo0 -
Hello! I've IDC (tiny) - almost three weeks since lumpectomy and sentinel node excision. Negative on that. I'm estrogen and progesterone positive and HER 2 negative. Plan is to have radiation and hormone therapy. Anyone get oncotype results that caused them to need to add chemo? And if so, before or after radiation?
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Sorry for the diagnosis. Pleased for you that it's been caught early. Did your oncotype score indicate chemo?
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steveadog1,
I am sorry to hear of your diagnosis. This is a very old thread which had been inactive for about 5 years prior to your post and it deals with a very different topic than your current concerns. You will likely find more active participants, and threads aligned with your concerns, if you check out threads for IDC or the stage you’ve been dx’ed with. Here’s a good place to start and don’t forget to check the date of the last posting. Take care.
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