Why was I stronger DURING treatment than I am now?
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Janet_M, nice to hear from you. You always share from the heart and have good information too. I'm so glad your peaks out number your valleys. My landscape is starting to look a bit more like this.
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Thanks for weighing in on the rant Janet! I am so glad I found this thread. Now I know that I am not the only one whose team had no captain and no communication, not the only one who felt I wasn't given enough information to make the tough choices - or any choice for that matter ( BS - "if we told you too much you wouldn't do anything" or this line when I ask about a certain feature of the pathology report - "I will tell you what you need to know" while underlining 5 items.. I was so PISSED after that, that I had the report re-read, edited and explained to me personally by a friend that was a top knotch BC pathologist - and, like you Rock it was different.
I am also not the only one who second guessed their treament choice. I am SO glad I went to Dana Farber (really an awesome place) for a second opinion and got out of chemo, even with a positive node.. but when I went back to meet with my MO for the "discussion" and she still wanted to do chemo, it felt like it was more their way and our way.....not MY way. My Mo is really quite good, which made that discussion even harder. I am not the only one to relive that entire mess over and over again.Thank-you all for that with your early posts on this thread.
Anyways , I could go on, but it sounds like all of you have been here and it just nice to get the encouragement that it will pass. This site has been such a valuable place to learn and share. As Janet said - we are the captains of our "team" and as Rock said - these Doctors go home to their own crap and in the end we are on our own. That is really how I feel. Thanks Rabbit for starting this thread.
And, really, I would like some educated input on this from you ladies...this would all be better if I could enjoy a few cocktails without feeling severe guilt that I am going to cause a recurrance. I eat great, work out, I keep my weight down and I feel guilty/depressed every weekend when it comes to - as we say in Boston -pahteeing. For forty plus years decompression was realxing with a few cocktails on the weekend after a hard week of work. I don't want one drink/day I want my 5-7 drinks over the weekend, but my oncologist keeps telling me no. I don't drink during the week but, I really miss my weekend socializing.That was a huge part of my old life. Anyone else?
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Wait a minute Lenn while I put down my Jack Daniels to answer that :-). I drink every so often. This has been a hard week with dental work coming and it's the first week of school for my 2 kids. I can't tell you what is best for you, but I see nothing wrong in moderation. If you're talking about 5 to 7 in two days... well sounds like a wee bit more than I would drink. I probably drink either a shot on ice or a Mike's hard lemonade 3 times a week. Every so often I'll have 2 shots in an evening. I don't subscribe to the alcohol causes cancer or recurrence theory. That's just my thoughts.
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I'm reading this while I'm drinking a glass of wine. I don't know if it's a bad thing or not. I live a very healthy life and I don't feel like it's a big deal. I've asked my doctors along the way, and nobody has said 'no', but nobody has said 'yes' either. They all seem non-commital. I had a Russian nurse (who I think was actually a doctor) who came to my home, and he said 'Does it relax you?' And when I said 'yes' he said 'then it's ok'. I really like wine, so I tell myself that if I was living in Europe, it wouldn't even be an issue. But I feel pretty sure that on the bad-for-you scale, it's somewhere less than stress and processed food. And it's delicious.
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My onc has said one drink a day; another doctor said no more than two. But yes, sometimes I like to have three! Especially on a weekend when, say, we have a beer with a friend in the afternoon, and then go out to dinner later on and have a couple of glasses of wine. Not like I'm sitting there downing three shots in ten minutes. Do I feel guilty anyway? Hell, yeah. Does it stop me? Hell, no.
I'll go through periods when I'm being pretty good...not drinking during the week, say. But then my husband will mix up a G&T with his homemade tonic water, or we'll be out and decide to stop at a pub for dinner. Old habits die hard.
My understanding of the alcohol/BC connection has to do with how the liver process both alcohol and estrogen. Apparently any excess estrogen in the body is destroyed in the liver. If the liver is busy processing that last cocktail, then the estrogen has to wait its turn, and toodles around the body looking for something else to do, like feed cancer cells (In case you guessed, I'm not a scientist and this is not a very scientific explanation). What I wonder is, if you are on aromatase inhibitors, then does it matter that much? Seems like the AIs squelch all the estrogen anyway, leaving the liver free to do what it was made to do...recover from last night's chardonnay.
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Russia has a huge problem with alcoholism.
Every dr I've seen has asked me first and foremost 'do you drink?" It must be a big risk factor.
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How did you gals get you oncotype in you signature? I didn't see how to. Mine was 38 supposedly(some weirdness with the test but I did have chemo. ) just wondering.
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Cfdr - Thanks for the explanation. It's has given me the best understanding so far of whats going on with the liver. A few clear sentences is so much better than a chapter in a medical book.
Timbuktu - I hear you. I asked my Russian about that and he got a bit defensive and pointed out that he only drinks champagne, and only on special occassions.
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If Russians drink more, then is there more cancer in Russia?
Lisa, if you want your Oncotype in your sig, you have to create a separate sig. line. Some put blog addresses, some have quotes, etc.
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That's a great point rock. I know their life expetancy is terrible. I'm going to check it out.
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From a quick search, apparently not. America, western europe and australia have the highest incidence. Death rates are a whole other thing.
There are so many variables I think it's hard to make a conclusion. For instance, Israel has a very high incidence but jews are genetically prone to bc. I think you'd have to be an epidemiologist to begin to understand.
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5 to 7 cocktails is a LOT of alcohol and a lot of it would be high percentage alcohol. I think I would be inclined to still have cocktails but make some of them virgins and watch the amount of spirits that went in the others, if you calculated out the unnits I think you would be very surprised!! Alcohol is pure sugar and sugar feeds cancer so it is extra problematic....... Can you swap a cocktail for a glass of organic red wine instead, that ahs anti cancer benefits as the resvertarol cancels out the alcohol.......and the relaxation effect reduces cortisol and stress hormones....!!!
The other thing is look at all the changes you have made already as everything is in context, so your alcohol is less risky than before but still a slight risk.....
I have one small beer every day, that contains tryptophan so is good relaxant and lower in alcohol than even wine......so i am not anti alcohol, just wish i was not a lobular girl as we seem extra affected by alcohol, no doubt cos of hormone effect, I love my oestrogen!!!
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Great answers everyone. THANK-YOU! CFDR -awesome explanation..the best I've seen and believe me, I have researched this subject . I was an organic healthy, eater who drank organic cran water all the time to clean out my liver pre breast cancer. Sprouted wheat bread, no carbs, Kale, broccoli or spinach eaten every single day.. for years.....but, I did like to party so, of course I want to blame my BC on something .. Could that have been it? Who knows. Lilly55- my tumor was mixed ductal/lobular so I think about that too. According to DF, research is showing that athough they are treated as ductal now, they may soon be treated as lobular, which, as you say, is more affected by alcohol.
CFDR - A lot of Drs. here do the 2 years Tam.. then the AI's even if you are post menopausal - actually that was something my DF and MGH Dr.s both agreed on but, hell if it is safer to drink on the AI's - then I am switching. Plus, I want one of your husband's G and T's.
What I have read, is that all the studies that have been done on drinking/bc connection have not separated out other factors, such as obesity and diet.But, Tim -you are right - it is like the second question they ask you. Eevn today, before I left my RO, he asked me. Since my diagnosis in March, I have just been drinking champagne, wine and beer (expet for my sister's awesome frozen Margaritas on 4th of July) and trying to be good .. I just don't want to live my life always worrying about this.
Anyways, I am having a good day today. My RO knew what a cord was, admitted it could have come from radiation and told me how to treat it. You ladies made me feel better about the night on the town I am about to go on. Another guilty pleasure -" Dancing with Stars "professionals at out local summer theatre... and I am not going to worry about the more than one glass champagne I am definately going to drink.
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Just have to weigh in here...I think anything in moderation is o.k. We can't live our lives feeling fear over having a few drinks. I say go enjoy yourself tonight, Lenn. With all you've been through...you deserve it.
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Ladies . . . I'm having a glass . . . Ok . . . on my 3rd . . . yikes . . . of red wine now. Before my dx, I hadn't had a drop of alcohol for over 3 years . . . since . . . well . . . it helps me relax and deal with the discomfort . . . none of dr's have asked me about alcohol at all . . . infact, I asked my onco, and he said "go live your life" . . . literally those were his words . . .
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Love it VeganGal....I'm going to pour myself a glass (or 3) of red wine right now!
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Lenn - It's always such a plasure to check in and hear that someone 'had a good day today'. As much as I empathize with people's crummy days, I'm so thrilled when somone's feeling great. And I'm sure your day got better with your 'DWTS' evening out.
I was out on a terrace last night, enjoying a glass of red wine. And I thought about the estrogen 'toodling about in my body looking for something to do.' And it made me think that I'd rather enjoy one glass all night, rather than order more and risk keep my liver busy.
I really wish there was a post-treatment survivor kit. And if there was, cfdr's brilliant explanation would be part of it. By the way Lenn, Dancing with the Stars was my guilty pleasure during chemo. Some of the nurses were into it too, so we had some pretty lively discussions.
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This board is so full of people with good information. Like everyone else, I thought cfdr's explanation about the alcohol/bc link was very helpful.
So here's a couple of other questions...was everyone on the pill when they were diagnosed? My surgeon told me to get off it the day I was diagnosed, so it is very obviously a big risk factor.
Also, do any of you ever get migraine headaches? I have gotten them all of my adult life and I strongly believe they are related to my cycle. Does anyone have any info./thoughts on either of these issues? I have thought about starting a new thread on these 2 issues, so let me know if you think that is the way to go. I just trust you ladies on here and would love to hear your thoughts on these 2 things.0 -
I never took any hormones. No birth control pills, no hormone replacement therapy. I always suspected they were unsafe.
Although migraines run in my family, my mother, son daughter and aunt suffered them, I have only experience one or two when i went through menopause. I assume that's what it was. At the time I thought I was dying. Hormone fluctuation must have caused them. But I've never had any since.
I should mention that I have battled weight issues ever since my first pregnancy so I definitely have too much estrogen. My surgeon has emphasized the need to lose and when I told her "i know, this is the fight of my life" she agreed. That's why I feel I really have to stay on the aI's, somehow. Otherwise my body will be flooded with estrogen. Also, before I got the bc, I had lost a lot of weight and then regained it. They say that gaining weight after menopause is a risk factor. Insulin and other growth hormones feed tumor growth. It was the perfect storm for me.
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I was on the pill as a teen and young women for about 15 years, but stopped about 20 years ago. I also took the OTC Estroven for perimenopause symptoms for 3 years before BC. The other thing I have considered is that I ate a lot of protein bars and foods with Soy Protein Isolate. I am very careful not to get that extra estrogen or synthetic estrogen into my system any more.
Some studies, I recall, says that headaches and cycles can go hand in hand. I never had to deal with headaches thank goodness. I only dealt with mood swings. Not sure which is worse :-).
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I was on the pill in earlier years . . . but have been on nothing for well over a decade . . . that said, I have had pretty severe migranes for about 15 years . . . and I do also have fibroids which I know was discussed in these posts as well.
Hummm . . . never thought of connecting these . . .
Intersting.
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I have response to your being on the pill and headaches question. I was taken off of the pill MANY years ago because it was giving me bad headaches for a week every month. So I was switched to Depo Provera and I had no headaches while I was on that. Three years ago I had to have a full hysterectomy and was put on hormones for hot flashes and other side effects of menopause. Once I found my lump in April this year I was immediately taken off of hormones. I don't know if the pill or hormone pills added to me getting breast cancer or not but it does run in my family as well.
I just finished chemo two weeks ago and am deciding on whether or not to do Rads, I am in the gray area.
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No hormones for me, could never tolerate them. I was slim, fitter than had been for many years when diagnosed, but had been overweight in past and drunk way too much red wine after my mum died..........I think mine stems from a blood transfusion and two surgeries close together over hysterectomy, a far from easy recovery......and time for lobular to grow fits in with this.......
I think cancer is opportunisitic so we can be good for years but on one day a combination of things just allows a chink of luck for cancer cells......and we can never know what that is so why waste life worrying, we need to live life not just be existing.....
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I never took the pill or took hormones. I did take lots of primrose oil during and after menopause and my onc tried to say that might have been a contributer but, a nutrionist at Dana Farber said no way. I am thin, active and eat good - don't like to take meds at all. Greg Anderson - from 50 Essential Things You Can Do - Breast Cancer Book... says to look back at what your life was like the year before you were diagnosed. I had a lot of inflammation from a major case of poison ivy and an infected sebaceous cyst on my back that took awhile to calm down before surgery. From July until December I was on steroids and antibiotics. So my immune system was compromised. I also had low vitamin D and have been diagnosed as having high testosterone levels. I think all of those things might have contributed. I now take a baby apsrin everyday for inflammation. I am also working on getting my immune system in top form. Still not sure if I should be on Tam or AI's..going to talk to my onc next week. I am on Tam right now.
I had my yearly physical 2 hours before I had the mamogram that found my BC. I remember telling my PC how lousy I was feeling.. The strangest thing.. I was sweating all winter profusely - a strange aluminum type smell. I think it was my immune system telling me something.
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I have been taking baby aspirin each day as I decided not to take Tamoxifen. I can't say if inflammation causes cancer, but I do know I've had bad teeth and gums for many years. My genetics were such that I was able to keep everything in check until I was around 30 when every tooth in my mouth went on the attack.
I wonder if the teeth had anything to do with it? They say we can tell a lot about a person's health from their teeth and gums.
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I've been told that inflammation causes everything. lol That's why excercize helps with recurrence...and everything else. At least that's what "they" think right now. I was also recently told that aspirin interferes with other enzymes and it's not necessarily the thing to take. I too thought that it would be good to fight inflammation.
I've had lots of problems with my teeth and I have arthritis. But then I know people in their 80's with the same problems and no cancer. I wish they would hurry up and figure this thing out already so we can stop guessing!
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Timbuktu...you just read my mind. I'm sitting here reading everyone's responses to my questions, and there is nothing common to all of them. I hate this. We are trying to fight something that can't be figured out, so how do we know what to do, what not to do, what we did that was wrong and what had nothing to do with it. I like it when things are black and white and there is way too much gray area here.
When I was done with treatment, I asked each of my doctors what I can do to avoid recurrence. Each and every one of them said, eat healthy, exercise, maintain a healthy weight, don't smoke, don't drink excessively and avoid anything with hormones (no hormone replacement therapy, no birth control). I politely explained to each of them that I am basically the healthiest person in my family. I come from a long line of people who are obese, abuse alcohol, smoke a lot and are not opposed to drug use. Um...and I get cancer? They basically told me to do nothing different from before bc (with the exception of taking birth control). That kind of led me to believe the pill had a lot to do with it, but your responses suggest otherwise. This is crazy. I'm sorry to rant, but this is so frustrating.0 -
I forgot to add...
VeganGal...do you take anything for your migraines? I take Imitrex and it's a life saver.
TeresaG...thanks for the info., congrats on being done with chemo., how are you feeling?
RockyM...my teeth are a disaster. More cavities, root canals, bridges and crowns than I care to admit. Maybe there is a link.
Lily...you are right, the bottom line is that we need to live our life to the fullest. I thought I had learned that lesson when I got sick, but as I get farther removed from that time in my life, I guess I need to re-learn it. Thanks for the reminder.0 -
I forgot to mention.... after I found out about the bc i started eating very healthfully. So I snacked on raw almonds.
I cracked a tooth. It abacessed and because of the chemo I could not have it pulled. lol When I was finally done with chemo (6 months) I asked my surgeon if I should get it pulled, the abcess had calmed down and I asked if it was dangerous to have a bad tooth? she said "yes! Have it pulled! It will make you sick!"
So I did... I guess it's accepted that bad teeth have something to do with the bc. Sigh...what doesn't?
One of the onco nurses was from St. Vincent's in the Caribbean. She said that women get bc down there...a lot! Fresh fruits straight from the trees, fresh fish caught in the oceans, lots of sunshine and fresh air. And they still get it. she said I was born with it.
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The only thing I have changed is no soy protein isolate. I was physically healthy before (we won't talk about emotionally :-)) and I never really looked back as to why it happened or how I can prevent a recurrence. A lot of ladies talk about what they are doing different and you have to find the new normal, but the reality for me is that there is nothing normal about life in general. I am the same now as I was two years ago with shorter hair.
The only thing I can hope for is that my complete and total breakdown last year will be the last one I ever experience. My menopause came fast and hard and now that that is over, I can look forward to vacations with my family sans tampons. Every time I used to go on vacation to the beach, skiing, etc. I would get my damn period. Well, now I don't have to worry about that anymore. My body changed a bit, but at 48 I still have time to get some sort of figure back. I will never be a size 2 again, but a solid 6 would be nice.
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