natural girls
Comments
-
WOW all you ladies are on a roll. It has been great reading everything! Thanks, I always learn so much!
ddlatt: Did you ever think of reconstruction like diep? I'm leaning that way. Someone told me today that her friend had diep recon and it looks terrible. She said the fat changes after so long. Has anyone heard of that????
One more thing. Does anyone use pHion ph Booster for alkaline water??
God Bless Us All
Patty0 -
seaotter, no, i never considered reconstruction. i didn't want any additional surgery or any additional pain, and also i depised wearing bras. i love my new body! i've always wanted a really flat chest. (be careful what you wish for, eh?)
0 -
munchy, sure hope you get favorable results on your tests. Once is more than enough with this beast. Have you done any reading at breastcancerchoices.org? There's a lot of information indicating iodine is effective in preventing and perhaps even reversing early stage bc. There's no guarantees with anything, of course, but I rest with a lot more confidence in my iodine supplements than I ever did while taking tamoxifen.
seaotter, my diep is almost 4 years old. At the time, I felt so alone because I wanted immediate reconstruction, not a mast, then rads, then reconstruction. It's more common these days, but back then, even in these boards, I think I found one other person who followed the same sequence. My brand new boob went through radiation, and I received the benefit of no abnormal scar tissue on the radiated area. It did fine and it's still fine.
If your friend knows someone with a diep that looks terrible, I'd bet a dozen cookies that it was done by someone who doesn't specialize in that surgery. Diep is a long surgery, and it involves microsurgery, which requires a highly skilled surgeon. I'd bet another 5 dozen cookies that the friend didn't go to new orleans for surgery. The originator of the procedure, Dr Levine, is in South Carolina, and of course he's good, and I know people in NY have someone they like also. I hope I' never have surgery again, but if I do, I'd travel again to get a surgeon who specializes.
0 -
Thanks ladies!
althea - I was hoping you would respond
. I can not afford to fly to New Orleans ( I think that's where you went, if my memory serves me right, and it usually does not!) I am going to see a surgeon at Ohio State that does diep. Can you give me some suggestions on what I should ask? Patty
0 -
Grace, I'm 48 like you, and I tried that adjuvant calculator and whether I punched in tamoxifen or arimidex or any other antihormonal treatment, the benefit in each case was 182 extra days of living. I'm surprised it didn't ask about radiation, which I had. Makes me wonder why I'm taking tamoxifen sometimes. And really makes me wonder why so many women are using antihormonals, plus having ovaries removed or suppressed if there is no additional benefit. Maybe it's the younger women in their 30s who get the additional benefit.
I've stopped taking it for about a week now, determined that I was going to eat only healthy stuff and take supplements and vitamins. Been drinking a lot of green tea as well and taking tumeric, multivitamins, and eating tons of raw greens and yellow-orange produce, as well as walking my dog for 30 mins. each day without any sunscreen to block the Vit D. And I've been eating some soy in moderatin and lots of flax for the Omega 3. But yesterday, my husband grilled cheeseburgers and I couldn't resist, then today I read about how so many things in the environment put too much estrogen into our bodies, and how soy is really bad and it all made me nervous.
Because I've allso been reading about hormone balancing, which is starting to make so much sense to me, but it's incredibly complicated to do that.
So I thought what if I've been putting too many estrogenic substances into my body and have nothing to counteract them. So I refilled the tamox presription today, thinking at least it will keep the estrogen out of my breast cells. So Munchy, I understand what you are going through and hoping that everything goes well for you.
I'm on vacation this week, so am searching for someone covered by my insurance who might be into doing the testing of hormone levels. Will involve a lot of phone calls I'm sure.
I'm also thinking that maybe I should just take a break from all this BC research and try to think about other things, because I'm feeling a little obsessive lately. I'm now getting embarassed when family members catch me on the computer and don't want them to see that once again I'm reading about BC stuff. Anybody feel the same way?
0 -
rguiff - I too get obsessed with this thread but I'm afraid if I don't look at it daily I might miss something important!!!! I tried tam for two weeks at half the dose. It was the most miserable two weeks in my life, so no more for me. Have you looked into DIM and calcium d-glucarate? I'm taking those and some other supplements and praying they work! I can not believe that getting rid of all our estrogen is healthy. I don't want to feel old yet!!!
((( hugs))) Patty
0 -
patty, I'd ask how many diep surgeries he/she has done, has any of his patients lost their flap, does he have any diep patients who will talk with you. I know there's a longer list of questions that people tend to ask their surgeons. I was fit to be tied during my month between chemo and surgery. I guess because my mom had bc in '80 and back then they practically took your rib cage along with every thing else. I was so concerned about not being able to lift my arm over my head after surgery, or worse, would I even survive surgery. It's a possbility even though highly unlikely, so I was in a tizzy. It's kind of ironic that the part I worried over the most took me into the most capable medical hands of the entire journey.
I think the main thing I do remember was a big wave of calm come over me the moment I sent for the information packet for diep surgery. I had this niggling little voice chattering at me whenever I dealt with my local surgeon. I convinced myself that I liked him, he was the best in town according to other local acquaintances, yet, that little voice in my head told me he wasn't the one for me. ....had the same voice in my head decades ago before I got married. lol Should've learned a lot sooner to paid heed to that voice.
Until you reach a final decision, my suggestion is to keep diep reconstruction in new orleans on the list of options. When you have a number of things to mull over, your heart will tell you which choice is the best one.
0 -
Patty,
"I don't want to feel old yet!!!"
Nah, you won't feel old, you'll just look it and that damn long beard growing in every day...it does hides the wrinkles. So what the hey.
0 -
althea - thanks so much! I will asked those questions. If it doesn't feel right then I won't have the reconstruction for sure. Going boobless doesn't sound all that bad, thanks to ddlatt and her photo.
Rosemary - lol
Patty
0 -
Munchy,
Did you have rads the first time around? I'm sorry to hear about you having to go through this worry again.
0 -
Thank you amber, that just shows me I may be able to find other onc. to help me.
0 -
Seaotter, I am doing DIEP in New Orleans. PM me if you want info.
0 -
Hi ladies!!! I am back from a lovely vacation. Have to go back and read up all the things I missed but wanted to say hi and hope everyone has been well! I am sorry to report that I did NOT eat properly on vacation although did ok considering. Did sneak in lobster a few times (yum!), lots of fresh seafood and only a little in the dessert area. Am looking forward to a "regular" meal tonight with lots of veggies, brown rice and organic chicken!
At least I took all my vitamins with me so had those all week...
0 -
hi,
Do you guys can guide me about this question.
Who orders the oncotype test? My surgeon/oncologist said tumor at 3mm is too small ...while I was in the hallway my daughter called Genomics and was told 2mm is the minimum...went back asked the nurse of my surgeon oncologist who appeared with a form that i did sign and left...That was a week ago today...just called Genomics gave date of birth and full name and it is not in their system...then I called the surgeon /oncologist office and waiting for a call back now....
Have appointment with medical oncologist on July 21...maybe they waiting for her to order it???? this is so stupid...the results would be back by July 21 had they ordered it last friday...why all this waste of time and ignorance?? I am on Medicare so I dont understand why this delay..that form is stuck somewhere and I did learn during this journey that we must be very pro active..after all it is my life and to them I am only another file or case...at least this is how it makes me feel.
Thank you,
Lizzy
0 -
My Med Onc ordered the oncotype test for me. In my case, it was held up for a few extra weeks because they ended up not having an adequate amt. of tissue to do the test, so a new specimen had to be resent. And Genomics called me about the insurance and told me that if my insurance wouldn't pay, I would qualify for financial assistance to have the whole $3,000 bill paid for me. I don't remember who would have picked up that bill though. But my insurance ended up paying for it anyway.
0 -
I can't remember if it was my surgeon or oncologist. But I do remember having to wrestle with the insurance co over it although I think it was them not understanding the pathology report which showed I met all their criteria for the test.
0 -
Thank you everyone who gave an opinion.
I live on Long Island as well.My daughter lives in NYC.
I am treated at a cancer center as well- Memorial Sloan Kettering in NYC - so yes every surgeon there is a surgeon oncologist and yes they have a breast clinic with medical oncologist in the same building.
The radiologist will be a radiation oncologist as well- i just learned all of this as I went thru all the baby steps.I think you ladies might be right about Medicare...they will be my Monday call just to make sure there is no hold up.As of 2006-2007 in all states Medicare must cover all oncotype tests however there is some requirement: must be ordered during the 6 months from the date of surgery,ER+,Stage I or II early stage BC. and node negative.I qualify so I wonder why the delay...it must be simple work overload or Medicare.
I will follow up.
Happy 4th July to everyone!God bless!
0 -
Hello ALL.....Hi Deanna!!! owe you a note and catch up..so sorry i have not.Goin thru alot BUT..my treatments are OVER!!June 10th was my last treatment and the aftermath has been tough!!! This thread is awesome, I just cannot keep up with it!!!So much great info!!!
My sleeping is shot. I had been on biodentical hormones and a custom prescribed Melatonin creme. and worked for me. Since surgery and chemo, my onocolgist will not approve this for me and feel why not, ovaries will be out soon and have had a bilateral mx?! They say the hormones in the creme is just not proven etc?!!! I HAVE NO clue of what to expect after chemo and am very wired, cannot sleep as I wake up 1PM for an hour..wide awake and then 4PM before the birds are even up!!! Took Lorazapam during chemo. That works for so long. Take a timed released Melatonin 3mg..that works for maybe 4 hours?
NOW.. knowing sugar could be the culprit as i find mysellf craving that after a meal.. ice cream last night.. small amount but it is still sugar. Before my dx, i had made strides in no sugar, dairy and wheat in my diet... i strayed a bit away and maybe that is a key element. I am also doing a liver detox by renew life and can that affect sleep?
I need to talk to a DR who understands all of this. My onocologist has very little emnpathy and goes only by the medical books. I followed Suzanne Somers for years and feel her philosophy is right on.Balanced hormones and replacing them naturally. Also, when is it an appropriate time to get hormones, thryroid tested as it is almost only one month since chemo ended?
Thanks for listening. I just want some semblance of a oneness back.Natural sleepiness and ffeel i can go back to sleep naturally when i wake and am in this high alert mode. This is very frustrating. HAVE increased walking to try for sleeping deeper. Yoga 2x;s week and next week goin to try this low impact cardio class in the PM.
Am i expecting too much after a short time of chemo being complete. How come there is no info to help someone understand what you will be goin thru once the protocol stops. The posion of chemo still in me???
I have been so vigilant in eating all the veggies, fruits and balanced.. excercising.. nothing is working. Now what kind of holistic doctor can i find for this aftermath. THANKS and look forward tot try to keep up here and i am at a point now, where i may just go back to the saliva test and go to the natural melatonin creme as i am not a drug type person and does not get to the root for why I am not sleeping.
Sister in Pink,
Donna
0 -
Hi, Donna! Oh, I'm glad you've found us here. You will love this thread. I can't believe how much I've learned from the women here. As far as not sleeping, I think I went through that too shortly after chemo ended. I just think our bodies have been through so much, it's not surprising that everything, including our sleep cycles, get really out of whack. It sounds like you're doing exceptionally well re. exercise, but I do think it takes far longer than any of us anticipate for the affects of chemo and/or rads to wear off completely -- if they ever do.
DH & I just returned from a 4-day getaway, so I need to catch on the discussions here. In the mean time, I wanted to share part of an email I got from my sister who is both in cancer research (RT) and a 2x bc survivor:
"Susan Love was in RI yesterday and I went to a talk she gave last night. She is amazing and the talk was fantastic. I got to meet her even though there were about 500 people at her talk. I have a good friend who was on a panel that questioned Susan after her presentation, so I got to sit at a special table. I am so impressed with her ideas about not just curing breast cancer but preventing it from happening. She is definitely on a mission and she is a big thinker not at all content with the status quo.
She mentioned the chemo brain study in her talk. Because of the Army of Women when this study was announced they had thousands of women interested in participating in 12 hours. She said when she talks about the Army of Women, women get it right away, but the researchers are really slow understanding that this can work. She talked about how this disease has to be studied in women; that they know how to cure breast cancer in mice now, but what they do in mice does not work in women. She said that she realized this in thinking about cervical cancer. When she was a resident, a young patient with cancer of the cervix would get a hysterectomy. In 30 years the standard for cervical cancer has gone from the docs not having a clue what they were doing to preventing it with a vaccine. She said this happened because they didn't have an animal model to study the disease in, so they had to study it in women. She also said that breast cancer is probably 4 - 6 different diseases. But, the problem has been that it has been thought about as one disease and treatments have been too much on the "one size fits all" attack. Same problem with risk factors - medical practice and also media have been lumping risk factors for breast cancer as if we are talking about 1 disease so you get it wrong.
She is going to be announcing some exciting news for women already enrolled in the Army of Women. They have almost 300,000 women signed up (about 80% are not breast ca survivors). They are going to beta test developing a database on the women enrolled for longitudinal, epidemological type studies. The women already in will participate in surveys that will begin sometime soon. The NCI is providing the IT support to make this happen."
I just thought this sounded encouraging. Just wish there were more doctors out there like her!
Hope everyone's having a fun & safe 4th ~ Deanna
0 -
I would love to hear from long term breast cancer survivors who have stopped/or never started hormone therapy and have gone the alternative route, ie. supplements, diet, exercise and healthy living.
0 -
Hope everyone had a great 4th. I have had a very busy few days, but fun with my French student visiting. I even found some angus beef hot dogs! But I still only ate half of one.
DonnaDio-If you are deciding to go the natural girls route. Just take it slowly. Read up on everything and look and look until you find doctors who are knowlegable enough to help you. It took me a while, but I finally found peace with my decisions. As far as the sleep goes, I must say if I have any sugar at all after 6 pm, I cannot sleep. I have no problem with tea, even with caffiene, but the sugar really messes up my sleep, and ice cream seems to really keep me awake so I just do not go there. As far as the melatonin goes, do you know that if a room is not really dark, it does not work very well? Even the light from a clock will be enough to disrupt sleep patterns. When I started using an eye mask, it made a huge difference.
Deanne, thanks for sharing about Dr. Love. I am so glad that she is going this route with research because I think they have been spending billions and barking up the wrong tree for too long. I enrolled in the Army of Women study. I could never understand why no one polled us women when dx'd. Like you, I live in a county with very high incidence of bc. You would think they would work harder to find common links.
God bless America and all of those who have fought for us and continue to fight for freedom in this world.
0 -
Donna,
I have no idea if this will work for you, but why not try it since it could be a natural cure for your sleeplessness. Take 200-500 mgs of magnesium citrate about an hour before going to bed. Maybe less. Mg is very calming. If you don't have any stimulants like a tv on with screaming commercials, your going to sleep.
You will remember this conversation as you take your mg, your eyes will get very tired, you can't hold your lids open, they will get very droopy, you will wake up at 7A.M. feeling like you just won the lottery. You will come over to my house and start cleaning because your full of energy. Hmmm, that could be my dream, anyway give it a try, see what happens.
0 -
interesting to hear about Dr Love. I have such mixed feelings about her...ie there was a time not so long ago when she was advocating that women should not have/did not need mammo until 50, because younger women were unlikely to develop BC...lots of interesting conflicting "opinions" from her. There just seems to be something "off" with her, I can't explain.
0 -
EWB,
I agree with you that there is something "off" about Susan Love. When she speaks she is very personable, but when you read her book, it's full of simple-minded "fill." She doesn't raise any questions about the status quo. Everything is black and white.
She also responded inacurrately to a research study by O'Meara on hormone-takers, dismissing conclusions as biased because, "that study looked at only healthy breast cancer patients so the study doesn't count."
Well, um, what about all the other studies reporting the same thing? Were they all biased? Were they all healthy breast cancer patients too?
Absolutely not.
She refuses to acknowledge any data that doesn't support her opinion.
anom
0 -
Just joined the site today and will check Natural Girls as a Favorite because I've decided today to stop Aromasin. I took Tamox for 5 years and have been struggling for 2 years now on Arimidex/Aromasin. I'm at the point where I start to weep when I look at that bottle every morning. The hip pain and joint/muscle pain and fatigue is too much to bear. Life is too short.
I'm making the decision knowing I gave it my best (7 years) and hoping my Oncologist will support me. It's occuring to me that for a Stage 1 plus radiation situation, I should be able to go forward with peace of mind.......as long as I do my part with diet and exercise.
Looking forward to absorbing all the wisdom you all have about this. Thanks in advance!
0 -
DonnaDio, why are you having your ovaries out? I noticed that you had chemo, which should put you into chemical menopause if you were not there already. I'm assuming you were at least close since you were using the bio identical hormones. And I also see that your Breast cancer is hormone receptor negative.
0 -
Welcome Bette G !!!!!!! The ladies on this thread were and still are very helpful to me. I suggest you start from page one and read the posts, if you have time. Then ask any questions.
I took tam for weeks weeks and said no more. You made it to 5 fives years, way to go!!! I would think that would be enough for sure.
Patty
0 -
Bette G! Welcome! I am with seaotter, way to go on the 5 years of tamox and 2 years of Arimidex, I would imagine that would be enough!! I think once 5 years is up, there are no additional benefits to be had. You will find loads of info on this thread, everyone is awesome!!
Lorraine ox
0 -
Vivre.... Thank you once again for your tips for sleeping and using no sugar after 6PM.. i have been and before cancer DX.. i was much more mindful on that. You have helped me during surgery and appreciate your presence here as you are always right on! I slept amazing last night and not sure why?!!!Maybe the no sugar kicked in already.. and did my usual melatonin. I was so happy and feel rested today. Goin to get the eye mask next. Makes sense. Thanks again!!!!! I am goin to see what natural DR will come my way and slowly get educated on that.
Rose...
Rosemary...Good idea on the Magnesium Citrate.. as i take that but after dinner. Will take it when i take my melatonin and see. Heard that does help. I slept best last night and the first time in aobut 12 weeks.. chemo ended for me less than a month ago.. and wonder if things are calming down chemically?! Thanks for this great suggestion. Now if this works, do I still have to come and clean your house...lolol.
Welcome Betty G...i am sort of new here too!!!Sorry for all that you are goin thru but you are doin it!!!Not always easy when you have the se's that you are having. Would GLucsamine and MSM or Chronditon work i wonder for the joint issues ??You could find out here on that, and maybe findiing a good joint supplement in a powder form.A thought.
Hope to go to yoga today and do as much physical stuff as i can to get naturally tired. Sun is finally out here and walked my three senior goldens this morning. That is a slow walk!!!!But it is good for them and to give them circualtion for their stiff joints!!!
Healthy thoughts andThanks!!
Donna
0 -
Donna,
I was thinking to just have my ovaries out as well, as a precaution. I was not BRACA positive.
However, I read up on what ovaries do for us throughout our lives. We are so perfectly designed, and our ovaries are part of our endocrine system, and designed to give just the right amount of "stuff" out for all the phases of our lives.
Read up on it before you decide to have them out. I decided to keep mine for now. If in the future some compelling research shows me I'll live longer by having them out, well, I might do it then.
Good news: Saw my GP today (a young woman) and she was okay with all my Iodine, other supplements, exercise, organic foods, plant based diet, no red meat, no sugar, light to no dairy. She agreed to let me try desecrated thyroid for my hypothyroidism rather than synthroid, so that is in the works. I did do all the medical stuff they recommended as well, but she did not "pooh pooh" the natural homeopathic things I am doing in addition.
Makes me wonder if the younger physicians are just more "open" to this? hmm
Spring.
0
