TRIPLE POSITIVE GROUP
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Hi Miss Gout....I'm +++ Stage 3, 50 yrs and FLUFFY...lol....i am 5'4 and teeder around 200 usually since I injured my back about 10 years ago. I use to be quit fit, but after rupturing several discs...everything in my fitness world went down hill. Never smoked, did drugs and only an occasional drink....go figure...its just the luck of the draw sometimes.
However with the steroids of chemo...I seem to be gaining, but not really eating because I cant taste anything.
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Nicky and Cami, if I lived in France, I'd be dealing with cirrhosis instead of breast cancer.
I remember going to a scientific meeting in Cannes a few years ago (yes, they have scientific meetings in the most beautiful place on Earth--how cruel is that?) and when we broke for lunch they had wine on the table. I was thrilled, but also slept through the afternoon session...Nicky, I too was sort of reluctant to go out there and look things up when I found out I had cancer. I think that is normal. After a few weeks of gaining a little bit of acceptance, I poked my head out of the hole I was in and found this board. I've never cried over my diagnosis, never sat down and felt sorry for myself. It is interesting, as soon as I had the info in hand of what I was dealing with, I started the fight. The only time I really faltered is when I finished chemo and rads and knew I was pretty much done. I was going for weekly taxol for 12 weeks, and when I was sprung, I thought I'd be much happier, but that's when I felt fear. Right now I'm on a 6 week herceptin vacation and haven't had a doctor's appointment for 3 weeks. It is very strange.
Sugar and alcohol do go hand in hand. I know when heavy drinkers give it up, they crave sweets. I also remember reading the literature the hospice team gave to my family when my father was dying of adenocarcinoma. It said to not push food on the patient because the nutrients will only feed the cancer and not the body. Now that's when I cried!
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Question for the ladies who've survived external beam rads, did your breast ache a lot? My radiation oncologist said that was normal, but I'm a few months out and just ache and ache and ache.
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Are u cancer free now? Did urs involve lymph nodes under profile says you was in stage 1? How did it get to 3? What yr were u dx?
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Lago,
No offense taken. I have no dog in this fight. But none of the articles I 've read on the subject suggested refined sugar caused cancer as far as I remember. It was as PBrain just posted. They fuel the growth of cancers.0 -
Oh silly Pbrain u know I don't know what all these rads are called?---well I don't have breasts anyway, but I still have phantom aches.
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Yes obtain heard it feeds the cancer too! I don't even wanna eat nomore
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What sugars do u look for on package carbohydrates or sugars?
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goutlaw I know a woman who was diagnosed about the same time as I was, obese, highly hormone positive, HER2- and had many nodes. Also stage III but not sure if she was an A or B. She is continues to be NED. She is slowly trying to lose. She is still obese though.
As far as sugar and diet. Try to follow a diabetic diet. More veggies and keep your intake of carbs, starches etc way down. Pasta if you do have it should be a side not your main meal. Labels that have 5g of sugar or more per serving… stay away from those… and pay attention to the serving size. It may say 3g of sugar but if you are eating 3 servings worth then you are consuming 9g of sugar. It adds up.
Ashla I'm still not convince cancer is fueled by sugar anymore than any cell is fueled by sugar. Technically cancer is fueled by food. That doesn't mean we should stop eating if you know what I mean. I think some of the "naturalists" over state the issue.
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Oh I really don't know a thing but my sister just went for her yearly regular exam that she has always been vigilant about and after all of the tests she was told she's in perfect health --she's 74) and the Dr. said everything was fin--oh yea he forgot she was stage IV--we laughed about it. Cuz she has always taken care of herself--like my mom--oh yea my mom had it too. hahaha U see why I have this attitude---my aunt another health nut--had breast cancer---another aunt health nut--cancer--I use the word nut kindly we would tell them that and tease them. Then I had 2 aunts never followed a rule, obese, did anything they wanted--one died at 88, the other at 96--both had sudden heart attacks. That's pretty much why I just follow what the Drs. say and not much more cuz it like tag u'r it.
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Geez. You gals move quickly here. I don't come everyday any longer and need to find the time.
I'm with Cami and PBrain - love my wine. So Cami, are you a whap-a-ho as I call my Italian husband.
Alcohol for us ER positive ladies is not a good thing because the alcohol (as well as many other things) caused an increase in Estrogen which we don't need.
Cami: You are a breath of fresh air for many of us here. Keep it up!
PBRAIN: I'm almost 2 years out from Rads and my breast still hurts. My oncologist says it will hurt forever. Lord I hope not! My mammos are painful and the techs don't understand it at this point. I still get the tingling in my breast and under my arm too.
I still haven't caught up reading but welcome to the newbies - we hate to see you here but welcome ro you!
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Nicky, wow, that’s quite a story! Your stepladder thing I could really relate to – I did the exact same thing on a stepladder a few weeks ago. It still hurts, actually. I highly doubt it is cancer related though as I’ve had all that treatment and had a bone and CT scan back in February and got the all clear. That’s kind of funny – whatever made that stepladder fall probably saved your life. Congratulations on being NED!
Re the sugar thing, that research oncologist/nutrition person at UCLA also recommends limiting sugar intake, and she’s an md so unfortunately….
Cami, wise words, as usual. I do wonder why I got it though, not because I blame myself (I definitely don’t), but just because it would be nice to know what the triggers were in my case. Like, if I knew for certain if I had sweets I was going to get cancer again, I’d have zero tolerance. But I do have a sweet tooth so if that isn’t really a factor for me, then I’d hate to deprive myself for nothing! I mean it’s not great for you anyway but still….
McCatherine, wow! I would definitely wonder why you got it…..
Goutlaw, don’t try to lose weight per se while you’re on chemo, it’s not a good idea. I mean, it’s a great idea to change your eating habits b/c it sounds like they aren’t so great, and to exercise more, and you will naturally lose weight if you do those things. But don’t diet per se.
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Cypher,
My onc keeps telling me how my stepladder adventure is what has me here today. He says that that day it probably didn't cause the fracture but accentuated a weakness already there from the mets. A sharp movement a few weeks later was enough to finish the job. Scary!
I agree with you it's not a good idea to diet on chemo. Yes, to eating more healthily if you feel up to it, but the most important thing during chemo is to eat!
As I said, I do eat quite healthily, pretty much always cooking from scratch, but that's as much because that's the way I enjoy eating rather than changes I have made. I'm lucky, for example, I'd rather a good salad instead of a plate of chips..... But I feel as well that I have to live with my dx, so if I fancy a glass of wine, or a slice of cake, I'll have it, just in moderation!
Nicky0 -
ArleneA could u tell my mention of a unibrow gave my Italian heritage away, plus all the wine, hahaha-oh not to mention my whole family is crazy. For some reason that all goes together and I take no offense at anything that I'm called hahaha
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Hello all - just returned from a two week trip to Austria/Germany for a family wedding. Hope you are all doing well. It figures that I would return to this thread during a conversation about alcohol and sugar after two weeks of beer and apple strudel - sometimes simultaneously! Now I need to get back into the gym and watch what I am eating - but, it was a fun couple of weeks! This was my first serious travel since diagnosis and treatment, and it was nice to get back to that!
Here is the photo evidence:
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Yummy!!! Special K!!!! How wonderful!
Im a believer in the 80/20 rule...if 80% of the time I do things right, my body will be strong enough to handle the 20% of strudel and German beer times!!! I think a big key to all of this is living a life that makes you happy : )0 -
geewhiz - I like the 80/20 rule! Fun, relaxation and happiness of being with family has to be good for me too, right? We actually ate pretty well - everything we had was fresh and simply prepared, so the strudel/beer thing was the only sin! We also walked, hiked, got lots of fresh air, and enjoyed everthing!
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I was reading some of the comments speculating on the why behind having cancer because we each would like to have some idea what caused our own.
Sort of along the same line of thought is that when I see those who are diagnosed with very very early stage bc who are panicked by it and rush to do extensive treatment as their choice of protection so that it doesn't ever recur, I wish there was more of a tool for us each to use to help us a little bit more with knowing more about our own true risk level, before selecting among choices for treatments.
To me it is tragic that so often in our concern about recurrence we are so docile about accepting harsh treatments. (To each their own; I'm just saying where I come from about it.)
Lately the discussion here has been about what caused our cancer and what things are risky behaviors. So IMHO, the one thing that is never shown in risk calculators is anything that helps us make treatment choices based in part upon our own risk behaviors over our lifetime thus far. For example, there is no effort made to include in the statistics the amount of increased risk due to being a light smoker, a moderate smoker, or a heavy smoker, yet that one risk factor should be there, so that the people who have almost no risk factors at all can make a more genuine decision about whether to go easy or to go for broke when choosing between "treatment lite" and "throwing the book at it". Ditto for the range of alcohol consumption, or for having worked with very toxic substances in our jobs over time, or for using lots of chemicals over time for beauty treatments or home cleaning, etc.
This is getting to be too long of a post, but you get the idea. As a health care worker, I just think it is truly seriously dishonest for oncology providers to throw very toxic treatment choices at someone with early stage bc without ever including any analysis and discussion about those individual prior risk behaviors to add into the entire picture for consideration.
A.A.
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I think the biggest risk factor we have is being female and we cannot take responsibility ourselves for that
I was at an appointment re: BC and a young resident was seeing me. They very naively and with authority stated that 'now that you have made all these lifestyle changes you will have cut your risk of recurrence in half'. I looked them in the eye and calmly asked 'what changes?' I then told them I had maintained a good, healthy diet and exercise regime prior to diagnosis, I had maintained a healthy weight and was actually now heavier than prior to diagnosis since the steroids of chemo and since beginning tamoxifen. I also stated that I had never drank alcohol or smoked, I had birthed four sons, starting at the age of 24 and had breast fed all for what, once again, may have been considered too long by some.
The resident looked shocked and contrite and apologized. They thanked me for stating this and said that they tend to assume that cancer is a lifestyle disease and they shouldn't assume this. They had thought by my physical appearance at the appointment that I was doing all the right things 'now', not realizing that nothing had changed.0 -
Great points, AA and websister. We just don't know, do we? I saw a Facebook post from a childhood friend that I recently got back in touch with. She posted that it has been 25 years since her mom died of BC. So...her mom, my mom, me...who else on that street? What don't I know about?
And interns...yeah. I had one practically gasp and say "They couldn't reconstruct you?"
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Early on in my treatment, I was asked to take part in a study being done on women with stage IV BC. It involved having blood drawn and filling in a questionnaire. To practically all the questions, I answered no - no history of cancer of any kind in my family, never smoked, mother and father never smoked, gave birth to my children when I was 24, 27 and 30, breast fed them all for at least a year each, always exercised, always ate healthily, always a healthy weight.........the list goes on. It really brought it home to me that I don't fit into any of the usual lifestyle groups. But I still got breast cancer.
Nicky0 -
Well, there are some very good tests that assess the risk we carry for recurrence. One is Mammaprint and the other is Onco Dx. My MO says he uses them all the time to diagnose treatment plans, but he doesn't run them on Her2+ patients because we will get a high risk score from the beginning.
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Others sometimes wonder why I opted out of various recommended treatments as an early stage bc patient.
In part it was because my family included masses of people with breast cancer yet only one who died of breast cancer. But hers was detected very late, way back in the 1950's. Since the overwhelming majority with cancer in my family on both sides weren't dying of it once they had it, I've never felt particularly threatened by it. My older sister was dx'd with IDC 2 years before I was, did no treatment for it other than surgery, and has never recurred. (She did have a different type of bc, IBC, about 4 years ago, for which she did chemotherapy, rads and is on Femara, and is NED, which is also unusual for that particular type of bc.)
But that is my point. Because treatment is designed to prevent recurrence, and not to prevent initial occurrence, at time of selection of treatment we should be given a full analysis, not just of the tumor-in-comparison-with-the-group-of-people-that-includes-those-who-have-much-more-negative-histories-than-we-do-but-that-history-isn't-analyzed-for-risk.
We already know that the vast majority of early stage bc patients will never recur. We should be making sure they understand fully that only a small group of early stage patients recur, AND that those who DO recur are likely to be those who have the more negative histories.
They should still have the free choice to do extensive treatment, but they should be offered a more genuine analysis of their risk.
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Pbrain,
As you say, the tests are used but at this point they do not apply to HER2 positive patients "because we get a high-risk score from the beginning". Yet as a 1.6 IDC HER2+++ patient with some DCIS, I have never had trastuzumab or a taxane or an aromatase inhibitor and I have never recurred over the past 11 years.
The point there is that they fail to take into account fully my family history or risk behavior for evaluating just the risk for recurrence. They only take into account my risk based on initial occurrence.
A.A.
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What a fascinating conversation! I was diagnosed with IDC at age 34 and have round 4 of TCH next week. Again, in the beginning, the greatest factor is the big fat WHY? I also did everything "right" prior to diagnosis - didn't eat red meat, love my veggies, exercised regularly. Why is the medical community not interested in identifying a cause at all? If this were E. coli poisoning there were be a thousand questions - where do you grocery shop, restaurants, etc to find the source. If all women diagnosed this year completed a 100 question survey to at least identify some trends that would be a start. Seriously, what if we all used the same deodorant, or have the same favorite chocolate bar?
Just venting where I feel American Medicine is lacking. Thanks all for being out there
) I don't post a lot but just reading your thoughts and experiences helps me tremendously.0 -
Dr. Susan Love's Army of Women is attempting to compile data to try to make some determination of cause - here is a link, and they do want to hear from diagnosed women, as well as undiagnosed.
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Websister, the lifestyle link statistically is confusing to me, as the overwhelming majority of women that I know who had it or have had it (including the ladies on this thread) are fairly healthy to very healthy. The in-person support group near where I live – a group of fit, health conscious women with only a handful of exceptions. So …. I dunno….
Alaska, interesting about your family history. The geneticist actually recommended a prophy BMX for me (i.e., prophy on 1 side) based on my family history of bc, while my 83 year old mother, who had bc in her early 40s, was sitting right next to me. (Of course, she had a BMX but that was like in 1972 and they didn’t have a lot of treatment options.) It does seem like not just bc but the viciousness of the bc runs in the family…. However I did TCH, rads, and tamox anyway. But no BMX, just a unilump.
How do you know that the early stage bc women who recur have more negative histories, and what do you mean by that? I’ve never read that.
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Soecial welcome back--It's wonderful that u had such a great time--u so deserve it.
And I'm sorry I can never get involved in this deep discussion because u know I don't understand so many things and no one has answers or we would have them so I just don't think about it.
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cami - thanks, we had a great time but it is also good to be home! I woke up the first morning home (we returned at night) and wondered why the hotel had such similar decor to mine - then realized that I was home, then was jet-lagged and wasn't really clear on how I got back, lol! It took a couple of days, but I seem to be back to normal now!
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SpecialK hahahahahahahaha
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