Dis Breast Cancer Survivors Part IV - GAGWTA

[snappy]

Love that link, Linda! My New Orleans station!

 

[snappy]

Taz, is she the only one in her family with the high cholesterol? If it is a genetic issue, meds may be the only answer. I would worry too though, starting the meds at such an early age. I think she needs a full workup. I think changing family meal nutrition will help out that entire family and likely, future generations as well.

Easier said than done but I am glad to hear your daughter is working on it. I see a lot of families in my neighborhood biking together in the evenings after it cools down a little. Unfortunately, life style changes may not be enough. My mom and her 85 year old friend decided to go cold turkey off the cholesterol med they were both on. Three months later: mom's blood work showed a huge hike. Those meds really do work. Unfortunately they do have side effects. but my mom and her partner in crime just read something on the internet about people not needing to take medicines. Needless to say they are both back on. The risks when you are 85 exceed the side effects. I bet the risks are different with an 11 year old, so you do need expert guidance.

 

[Pea-n-Me]

Tazdev, (putting on my cardiac nurse hat), there are two types of cholesterol - that whiich we eat, and that which our bodies make. The latter tends to run in families. However, sometimes an analysis of a child's diet reveals that the child is inadvertently eating a lot, even when that child is seemingly healthy, normal weight and active. This happened to my sister's daughter when she was giving her a lot of cheese, thinking it was "healthy". Many kids also eat things like mac n cheese, hot dogs, chicken fingers and fries, grilled cheese, etc, regularly, and that would need to change if it were the case. Just like anything else, a varied diet of vegetables and fruits, whole grains, lean meats, limited snacks, and a handful of nuts daily (which have good cholesterol) will help lower cholesterol naturally. Oatmeal helps, too. And exercise raises good cholesterol. The danger of having fat circulating in the blood is that it builds up in the arteries, especially the small ones that are in the heart and brain, etc. A young child still has growing to do, so a "diet" isn't really necessary, just maybe a change toward healthier eating and exercise.

I think I've said here before that they looked at the coronary arteries of young American soldiers in the Vietnam war and found that even at a young age, they had the beginnings of artherosclerosis, as opposed to their Asian counterparts, who did not. This they chalked up to the American diet. And certainly it's gotten worse since then. As above, it would be great to have her see a nutritionist/registered dietician, which I'm sure they will as part of a workup at CH. I took my kids when they were younger myself. It was kind of comical because insurance wouldn't pay for it because they had no identified "need", but I wanted them to go anyway and I said I'd pay for it. (Having my mother living with us was a challenge as she loves feeding "comfort foods", snacks and candy to kids; we had a lot of arguments about it.) I wanted them to hear from someone besides me, i.e. an "authority", about proper things to eat and proper serving sizes, etc. It was an eye opener for them. She had a test tube of salt and fat in there that was labeled "hot dog", because, essentially, that's what a hot dog is. She also said that things like chocolate and hot dogs are "vacation foods", cheese on a sandwich should be no more than once a week, a serving of rice was 1/3 of a cup, etc. That was years ago but those lessons have stuck.

DS is an athlete with an athletic build, he can eat what he wants, but I still stress to him that for heart health, he needs to watch the fast food and junk (a staple of his and his baseball buddies in season; a ritual, really). DD was always good until last year when she gained a little working in a restaurant - snacking there became the norm and she gained some weight, plus I think she had some emotional eating going on as well. But she got a hold of it this summer on her own (well, with a little help from me, mainly providing healthy foods and giving her support and resources) and she managed to drop about 15 lbs on her own. She also does yoga, some weight training, rides her bike and we walk together.

HTH. In my experience counseling people on diet (in the hospital after a cardiac event), most are either uneducated about what their diet should be (as most of us are in 2015 - everything is super sized now; we need to go back to when it wasn't like that) or are in denial about it. It is hard to get through, but we do have a nutritional staff who work with patients on that alone, as well.

 

[Pea-n-Me]

Love that link, Linda! My New Orleans station!

Ha! I wasn't sure where it was from! Seems like that diet is big in your area. I should try it myself!

(I did think those women looked awfully skinny, though, did you?)

 

[Dancind]

I loosely follow a Paleo diet. I say loosely because it's more like 60/40. As I said, carbs have snuck back in. Potatoes are good for gut health, but you really have to cook them yourself to make sure good fats are used (canola oil is bad). I made a French cassoulet yesterday with chicken leg quarters, italian sausage, heirloom cannelini beans, bone broth, and a nice scoop of duck fat. Couldn't eat much of it, very filling. On Saturday we visited the Farmer's market and I made Ratatouille that afternoon, with plenty of olive oil. And I put coconut oil in my coffee every morning. Also use grass fed butter (kerrygold) at the drop of a hat. And this will make me sound weird, but I make my own tallow by rendering fat from our grass fed cow share. I cook with that too at times, for stews etc.

My cholesterol is great. Total is not a whole lot lower than when I started this, but my HDL has gone steadily up. So my doctor always comments on how good my ratio is, before this I was being threatened with statins. I could not last on a low carb, low fat diet, I would be much too hungry. Good fats are GOOD for you, and they don't make you gain weight. Nutrition science is slowly coming around from the bunk we were fed in the 70s/80s. I do lose weight this way, if I cut out the carbs. I do watch the sugar very closely (no more than 12g per day), and I do drink some wine. If I get above a moderate carb level, or eat more sugar, I crave carbs like crazy!

So I know someone could say I got BC again because I eat meat and animal fat. I am 99% positive the reasons lie elsewhere, and my diet makes me feel GREAT. I have been very sick in the past, and I love feeling good. At least until I get my Tamox/AI scrip.

Tazdev, sounds like your GD has inherited the high cholesterol. The only advice I can give, she needs to cut the sugar and simple carbs. That's not what the doctors will probably say but it works for a lot of people. And it's a hard row for a kid, I'm sorry.

 

[Pea-n-Me]

Portion control is a must. Serving sizes are really askew today - no wonder everyone is overweight! An old trick I remembered from WWs was to use a smaller plate for food, as it makes it seem more full. DD does this now. It also helps to drink a glass of water, with lemon, if possible (which acts as a natural diuretic), before meals. But exercise is huge, as it helps with muscle buildup. On my iPhone 6P I have the Health App. It shows in graph form your exercise habits. It is not uncommon for me to walk a mile and a half during a twelve hour shift! And taking the stairs, bending down to tend to things, and getting up and down out of chairs constantly really helps. I try to keep it up on my days off by walking the dog, but admittedly, sometimes the graph dips a bit on those days as I'm exhausted. It is helpful to see it, though, in black and white, with no extra thingamajigs to carry around; I keep my phone on me anyway. So maybe that could be an incentive for GD?

Re: meds. I have mixed feelings about them. We see patients who shunned them for years who come in with a big cardiac event and cholesterol off the charts. Seems kind of sad. And they go on them then, right away. So not sure which is worse. OTOH, DH and I both have high cholesterol in our families. I was on niacin for a while, then switched over to zocor at my own request (after reading cancer recurrence rates were lower in people on them) but I had bad side effects so I came off. Currently not on any meds and my cholesterol has been excellent. DH has been on meds and has had some pretty awful side effects, as has my mother, but both of them changed meds around a bit and have their blood work followed closely and they are doing ok now. A lot of people say they want to get their levels down on their own but they are not always successful, so either way, there is a risk.

Good discussion.

 

[tazdev3225]

Thanks for all the info everyone. I will say that diet is part of the issue. My daughter and son in law are both really picky eaters. This has been a huge eye opener for them. Portion control is another issue and I am helping her with that. Thankfully my granddaughter has never been a picky eater. Unfortunately I do think she got the bad end of the genetics pool. My family has heart attack and strokes but we live to our 80's and 90's. Her father's family has issues with high cholesterol and heart issues. My granddaughter is a bright kid and when I watch them we google to see what can be better for her. I have her active over the summer we go to the pool a couple days a week. I have even said I will buy a bike and take her out riding. I figure maybe I can get a little healthier and lose some weight too.

If we don't hear from CHOP this week we are calling the other children's hospital in the city. We are fortunate that we live in Philly and have some excellent Children's hospitals. I feel like I am on a never ending merry go round. My dad is doing better and sounds great so now I have something else to worry about.

 

[snappy]

I agree Linda, excellent discussion. It is really good to get balanced info about diet and exercise.

I am not sure if I think the women in the video were too thin or not.

My experience with relatives and people I know was that when you lose a good deal of weight, say 20 to 30% of your body weight, your skin has been stretched by the extra fat, and it can tend to be loose, and this looseness causes the individual to look thinner. If the person is younger there is a greater chance the loose skin will tighten up, and even sort of "be absorbed." However, as we age that elasticity waxes and wanes as some of us of a certain age know, and I think heredity is a factor too, along with the amount of weight lost, or the percentage of weight lost.

I will say I thought the younger woman should be in the maintenance phase, which is the phase when you eat only "whole" foods, not Ideal Protein foods. It was confusing to me why she had a number of Ideal Protein products on the counter in her kitchen unless it was for demonstration purposes only. The seriously low level of carbs in this diet was only intended to be followed for a short period of time, during the active weight losing phase. After that you eat carbs, actually as much as you like, but you "separate" carbs and fats in your diet for lunch and dinner, with a weekly "treat" day when you eat whatever the heck you want.

You kind of find your own level of carbs that your body can handle, if that makes any sense. Apparently, everyone's metabolism is very different as far as the amount of carbs it can process without the body adding too much in fat.

If you have eaten a lot of carbs though out your life and you are not a "spring chicken," your sensitivity to carbs might be higher than another person.

I read a great book on the subject, Why we Get Fat, by Gary Taub. I don't agree with everything in his book, but it does make sense to me. He is not advocating an Atkins type diet. But it is low carb, and very similar to Ideal Protein using whole foods instead of purchased Ideal Protein foods. Again, part of the appeal to me of the Ideal Protein was the accountability of meeting with a coach weekly. Also, there are about 3 of their foods that I really do like, so it doesn't really feel like a stringent diet to me. However, it is expensive. So are meds for high blood pressure and diabetes, etc.

Ultimately, finding out more about as well as focusing more on the carb count of veggies and fruits and a host of other foods has been a life changing thing for me. It was more than looking better. I really do feel better, I am more energetic, I walk differently. I think having a different body image has made me feel more confident.

 

[snappy]

Taz, I think your entire family is very lucky to have your for a close relative. You sound like you give and give and give. I would want you on my side in any health crisis.

 

[tazdev3225]

Taz, I think your entire family is very lucky to have your for a close relative. You sound like you give and give and give. I would want you on my side in any health crisis.

I'm blushing. Thanks, I love my family and want to be there as much as I can.

 

[snappy]

Posting to say I hope Minky is recovering from surgery.

 

[ThistleMae]

I'm not sure if this is something I can post here or not. If it isn't please let me know.
My Mum, Grandmother, Aunts, Great Grandma and Great Aunts all had breast cancer and several all had colon cancer. I just found this out. I knew about my Mum and thought that one of my Aunts had breast cancer. My Mum also had colon cancer twice.

I have 4 sisters and none of us have had cancer. I don't know about the many cousins that I have as I come from a large family and my Mum's family was also big. I had 7 siblings, my Mum had I think 6 siblings. Some of my Mums siblings had as many as 10 kids and so on.

My Dr. finally heard me when I told her that there was cancer in my extended family and has set up an appointment with a genetic counselor in Sept. They called me and wanted detailed information on all the family history of cancer. Who had it, when they had it, how old where they when they had it ect. I don't have any information at all except that I knew my Mum had it in her 50's. I am now 59 and have been okay and have had my 2nd mammogram which was clear.

My sister told me about the others that had cancer but didn't have any other information other than a lot had it. Also, one Aunt had liver cancer and my Mum died of lung cancer. My Dad had 2 brain tumors. My family doesn't like to know things and they keep things under wraps. My Mum never mentioned anything while she was alive so I was not able to get any more information.

Now the question. What does the genetic counselor do and is there enough information for them to work with? Is there any test that they do and what it is they look for?

Any information would be appreciated.

Thanks
tigercat

Hello! I just found this thread and saw your question and read some of the responses. I thought I'd share my recent experience. I just went for genetic counseling. My mother, her mother, her sister and her sister's daughter all had some type of cancer. The specific type is hard to determine because they didn't discuss their medical findings in detail with the family....so we don't really know if they all started with breast cancer. I still qualified for the testing....so I did have it done. Here's why. If I have the gene, there is a 50 percent chance my daughter may have it. If I have the gene, I am more prone to have ovarian cancer (which cannot be detected with testing). If I have the gene, they would recommend my ovaries be removed and I get yearly MRI's. So, this info is very important for me and for my daughter and her daughter. If I have the gene, my daughter should be tested. The counselor did say there is a chance the test could be inconclusive. Apparently, if the gene is not detected, there could be some other kind of anomaly, where the genes are showing some sort of distortion that they do not have enough information about to indicate what this means. So I'm hoping I don't fall into this category. But for prevention purposes, I do think it's very important to have the testing done. It's also important for future generations so they can determine whether they should get the testing done and then make some decisions about their risks. Just wanted to share my thoughts. Thank you.

 

[Pea-n-Me]

Great post, ThistleMae! Thank you. Posting your experience may be more helpful than you'll know as a lot of people read here but don't post.

 

[ThistleMae]

Great post, ThistleMae! Thank you. Posting your experience may be more helpful than you'll know as a lot of people read here but don't post.

Thank you....I do hope it helps.

 

[snappy]

Wow where is everyone? Both DD25 and my brother Tom are both in for this holiday weekend from NYC. We are spending a lot of time with Mom in her new digs at the retirement community, in fact doing the Sunday morning brunch in a few minutes, followed by a huge chocolate dauberge cake that I know is waiting for me in mom's fridge.

We celebrated my 62nd and my best friend's significant's birthday too at a lovely Italian restaurant, Irene's in the French quarter in New Orleans Friday night, followed Saturday am by a brunch at Atchafalaya uptown with that was equally lovely with DD 25 and her friend.

Having a rich weekend here, rich in food, and rich in family and friends.

I wish the same for every one of you.

Back to counting my carbs on Wednesday.

 

[Feralpeg]

Happy Birthday, Snappy!

 

[snappy]

Thank you! enjoying my daughter for a few hours more, then back to NYC. My brother left yesterday. My, how did that go so fast?

Left me plotting a trip up there. Looking for the right hotel at the right price.

 

[luvmarypoppins]

Laurie- and of course we can't forget the Glad you had a wonderful birthday with family and friends. Hope the year ahead will bring you much joy and happiness.

Minky - hope you are healing

Diana - hope you are healing too

Peg - hope you are healing too with the cat bite and your feet

Well I had my 6 month cancer check up and everything is going well. She did note that my calcium is very low so I have to double the script I take and she said my neck is really tight on the R side I know I am having some issues but dont want to go to the dr. Not the cancer surgeon, I think this is a ortho problem.

Tomm. I am going to the vascular surgeon, so we will see what the sonogram and he have to say.

I have made all the adrs for our trip so far. I only have to book the flight and renew my annual pass.

Ds3 starts his new job tomm. and ds1 continues in the job quest. Is been such a long time but I am praying for him for sure. He had one interview last week.

Dh is going to Calif. for about a week the end of the month and he is taking ds2 since he took the other 2 to Hawaii.

I have to cook alot on sat. as we are having a big church picnic on sunday.

GAGWTA

 

[luvmarypoppins]

Well I am back from the vascular surgeon and the sono showed that there is no more blood clot. PTL!!!! I didnt even see the surgeon. Just talked to the np. They just moved into a new offsite office today. We were one of the lst patients. Had that new office smell, lol, better than a new car smell I told her.

There apparently was a miscommunication or I didnt actually understand what the np said because she asked me what the hematologist said. I told her I didnt go there yet because you said it was no hurry etc. She said, no I was suppose to go before I saw them again. Um, ok.

So now she said I still have to take the blood thinner and after seeing the hematologist and having all those blood tests then the hematologist will decide if I still need to be on the blood thinner, not happy about that with the side effects I was having and the stuff that goes with that. Hopefully they will be able to figure out something of this mystery.

So now next Friday I have an appt. to see a hematologist. I just took who they had but I dont think I could get along with this guy on a regular basis, but I could be wrong. It says his specialties are thoracic and gastro tumors and lymphoma.

So another day and another dr. sigh, sigh. Getting tired of all these ologists.

Tomm. is sad around here with the 9/11 memorial stuff. I also found out a boy who was in my high school class died then too along with the dad of some boys who ds1 coached in basketball. They hardly knew their dad, so sad. And our friend from church who was a firefighter there and moved to Penn. just had some more surgery. I know his lungs were badly damaged. I saw a picture of him and he does not look well. So sad.

GAGWTA. Have a great day everyone.

 

[smiley_face2]

Peg, are you taking hormonal pils? I'm looking at threads on breast cancer.org since my Onc has given me a choice of "this one or that one, pick one". From what I am hearing it's impossible to lose weight on them and most gain. Seems like the doctors should know this. And being heavier creates more estrogen for the drugs to try and suppress, such a vicious cycle. I don't like this ride.

Janet, your flower story is so sweet. What is the esophageal problem from? Is that a treatment side effect too?

I know the thread had gone quiet for a while, but was thinking, surely there must be a couple of posts... didn't get any notifications... came here to find 2 pages of posts!!
I have something called achalasia, they think it may be hereditary, my mom had it too. It started about 10 years before my cancer, I had 9 dilations of the muscle done, I was literally almost starving to death! they finally did a surgery to cut the muscle, which means I now have acid reflux, and now a hiatus hernia as well. the spasms start in my esophagus, I have no motility, it doesnt work at all to move food down, I have to drink a lot of water to push the food through, but a couple of times a week, it goes into spasms which radiate through my whole chest and back. It even caused my heart to go into tachycardia byjeminy (i think that's how it's spelled) and I ended up in intensive care, had and angiogram and ended up with a weird ECG for several years. I get angina now, and the ECG goes wacky once in a while, like when I was on chemo, but so far I am still here!! The surgeon said the only other thing they could try would be to remove the whole esphagus and that would take care of the hernia too, but a dear friend died this summer, he had cancer in his esophagus and they removed it, he went into a coma after the surgery and died, so I won't go for that option until the pain gets to be every day!! or until my heart decides it can't handle the spasms anymore.
On a rather exciting note, next month is 5 years from my diagnosis! hurray! apparently the 5 year mark actually comes 5 years after treatment but I will celebrate twice cause you can never have too many parties!