Radiation recovery
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Edwards, after researching this whole breast cancer thing for the past three years obsessively , I have come to the conclusion that the answer to curing bc or avoiding a recurrence lies in PREVENTION. Part of that prevention looks to me to be following a better diet - less red meat that has been treated with antibiotics and hormones, more raw fruits and veggies, less dairy, less alcohol (aka sugar), less sugar and fat. You can find studies to back up whatever you want to believe and you can find studies to refute it also. I like to look at the big picture, including work being done worldwide. On a cellular level, cancer consumes a lot of sugar. Without it, it won't thrive. That is enough for me. I don't care who says what else on the subject. I am a bona fide sugar addicted human being. I am just doing my best, and making better choices at least 85% of the time. The less sugar I eat, the less I crave it. Chocolate in small doses - the lower sugar kind-that is my treat. Gotta have some. We don't even know what other toxic substances we are in contact with. All we can do is keep doing our best.
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You are right about so many studies Gigil. I am not suggesting at all that diet and exercise, quite the contrary, don't help prevent cancer. Months before I was Dx I was on a sugar-free diet, I lost a lot of weight and n fact I thought that was the reason. It wasn't totally. I had BC. There are a myriad of reasons to eat less red meat and more fruits and veggies. DH and I eat a lot of chicken so I am trying to change my evil ways. One dr told me exercise is also a big factor- 30 min every day. I do that. You obviously have done your homework- knowledge is key of course. I have a blood profile done annually so I keep a close watch on my numbers. Hope your holiday is fun!
Diane
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Gigil, I agree. My question for you is since you've investigated this sugar business...where does the sugar in milk or yogurt come out on the scale? I ask because I do drink a non-fat latte daily, and eat non-fat greek yogurt for breakfast along with an apple or peach. Neither of them have any added sugar like the flavored yogurt or milk have. Those things alone (yogurt, apple, latte) bring me to 31 grams of sugar, and my goal is 24 grams daily! Add the 5 prunes which I eat for osteoporosis issues and I add another 15 grams. I've always heard that "naturally occurring" sugar like that in fruits doesn't count, but how about the natural sugar in milk and yogurt? Have you run across this in your studies? I'd hate to give up my non-fat cup of milk and my less than 6 0z of yogurt daily as I have osteoporosis issues...... Thanks.
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thanks Josie and mostly sew. I would prefer to just go on seeing my oncologist and stop the visits to my BS. Anyone else seeing both?
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Redheaded1
Thank you for the words. That is exactly what I am feeling anxious about, it is the upcoming change in my routine. I thrive on routines. So now I will have to develop a new routine. I've wanted to start things like Yoga classes at the YMCA, dinner with my friends once a month so now I will put my time into doing those things. Along with regular exercise, good eating habits and reducing stress. All of those should keep me busy!!
RunFree16,
Thanks for your words of encouragement. I don't know what I would have done without this discussion board. I don't always post but I read the board everyday and it helps so much.
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KAT new routines that don't involve breast cancer are good. I started Qigong. I really love it. It is like a gentle movement meditation. One attitude I adopted after going through this ordeal is that I am going to wring as much good out of life as I can. More pleasant, positive moments, less doing what everyone else wants me to do. We have all paid a huge price going through this thing. If not now then when, right? This is time to start living life on your terms. It is very empowering to do that.
SEW everything I read says the same - sugar occurring naturally is better. Fruit in moderation. Yogurt is a form of cultured dairy, so it is good for you. You don't do a lot of milk by the sounds of it. You have to find a balance and you need those foods for osteoporosis prevention. Another thing I have found is certain fermented foods really improve digestion and as such, increase our immunity. I never used to like sauerkraut, and now I go for it big time. That is such a good thing for those of us who have gone through chemo and radiation.
Susannah, I go mostly to my Family Practice doc. She doesn't believe in going so overboard with testing, but she keeps a pretty close eye on me. She does a complete blood panel twice a year. I am now seeing my breast surgeon once a year. My oncologist retired, and I haven't gotten another one. I really want to find one that practices Integrative Medicine, so he/she will actually monitor my hormone levels. I really want to do enough but not overdo, and I want to know where I am when it comes to hormones. I think I am sadly lacking because I am starting to suffer such things as pelvic organ prolapse. It is mild, but I know that goes with hormonal deficiencies that occur during menopause. I am post menopausal as it is. I want someone who will treat me as a whole person and look after all of my needs. Just my opinion. My husband is an ER doc, but he has a side specialty in Integrative Medicine. He studied with Andrew Weil. I can't get my medical care from him however. Besides not being smart, it would never work for either of us. Now to find someone like him, who also specializes in oncology. I found one in Orlando, but I haven't made an appointment yet. I will soon.
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GiGil, I feel much the same way-right now I see so many different health care specialists who tend to various bits and pieces, I would much prefer a more integrated approach. As a 62 year old woman I too worry about hormonal issues and their effect on my bones and various organs. It's hard for me to step off the path and streamline my care, change is scary.
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Susannah I have sort of streamlined my care from the beginning. I researched papers written by many doctors and the amount of follow up needed for the different stages of breast cancer. I found a paper written by a female breast cancer oncologist from Harvard. I liked her approach, which seemed to encompass not over treating and not causing unnecessary anxiety, while carefully following up. I took her recommendations to heart. I have dealt with enough anxiety over this without tests being done that can result in false positives. It made sense to me. If I were a younger woman, I might take a slightly different approach. My primary care physician is very level headed and practical. She told me to relax a little and take the attitude that the bc is over and done. She doesn't have time in her type of practice to check hormones, work with supplements and other things, so that is what I am looking to add. And I continue to see my breast surgeon once a year. Coming up in July. I get my mammogram at the same time. I am trying to avoid too much radiation too. We have had enough already!
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good advice GiGil. My breast surgeon strongly recommends a yearly breastMRI. I've researched it, spoken with my MO, and after careful consideration have refused.i had an MRI before my lumpectomy which resulted in 3 frightening false positives and unnecessary biopsies. My current PCP will be retiring soon, and I am loking for one who will better coordinate and care for some of my treatments and testing. Like you I have a physician husband and I find other mds tend to over treat and test me. Thanks for your support, your advice is always thoughtful.
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My Oncologist told me to get an internist not a PCP. My PCP moved so I found an internist. Susannah I have never had a breast MRI. Why do some doctors order them anyway? Diane
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Edwards as far as I can see some doctors just order them routinely once breast cancer is found,and others do it for women with dense breasts. I don't think their use is really supported by the literature inmost cases.
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I'm seeing my BS twice a year. We alternate between mammogram and mammogram with breast MRI. The MRI was at my request and he approved it. I asked because the mammograms had missed my tumor and I lost faith in them. My breasts are dense too. Where I see my BS they have better technology than my local mammogram machine, I think, but I'm still jumpy about relying on mammograms and clinical exams alone. I'm only a year out, though, so this approach may change.
KAT, I'm glad you are getting so much out of this discussion board! It is really a very supportive place.
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I see my oncologist every 3 months for a exam. I no longer need to do mammos but it was to be every 6 months for 2 yrs then yearly. I had 2 breast MRIs neither showed a thing... not easy for me to swallow hence the MX. No regrets. I have learned we are all different and have to do what is right for us and our well being.
I don't remember who was posting about Culturelle? I would recommend it 100%! I took it for 30 days before surgery and I have never been so regular in my adult life. I was having some issues and within a couple days what a difference. I got it at Walmart for $27 but I am going to check Amazon to see if it can be found cheaper. Have to be careful as it cant be in hot temps or it deactivates it. If you have tummy troubles it truly for me made a big difference. It is also supposed to raise your immune system no idea if that is true.
Just checking in, hope all had a good long weekend of love and fun.
I didn't know Kate had been gone previously this long. If it goes much longer maybe the mods could check on her. Sending prayer her way.
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Susannah, I have made the same decision about MRI for now. There are false positives. I am interested in breast thermography. There is no radiation involved with that. I have to research it more though to see if they can do it on a radiated breast. There is another test as well that I looked into when I had the one MRI before my surgery. If I ever feel the need to do something more extensive I think I will look into Molecular Breast Imaging. It gives the results of an MRI without the risk of false positives. It works by having a radioactive isotope injected in a sugar base It goes directly to the tumor if there is one. The radioactive isotope clears the body in a short period of time. This is one place that does it, although several local breast centers do it. I know I can find it in Minneapolis. I almost asked for it last time when I had the MRI. You do not go into a machine, and it isn't such a long, miserable process. Here is a link to read about it.
http://newsroom.gehealthcare.com/early-breast-canc...
As you know it takes a long time to have a new technology adopted in the medical field. It is however approved and insurance pays or it. There is also a test that is the breast equivalent to a PET scan. I believe the main reason we get sent for MRI's is that they are handy, they are what the hospital owns, and they are where the hospital makes its money. Why refer someone out for a test, when you have a similar test in house - especially one that has been used for many years.
I have taken an active part in my treatment decisions every step of the way. I have to go with my gut sometimes (after a ton of research). Of course I left the surgery up to my surgeon. She was definitely the expert there, and I trusted her completely. If I were younger I might do things differently. But some things I wouldn't. There is a lot out there that is innovative and proven. My biggest fear is what you went through getting false positives followed by needless biopsy.
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thanks run free, lemon and GiGil. Run free, I know that MRIs are very helpful for some people, and hope I didn't imply anything negative about them. I know they are very accurate for some women, just not in my case.. Lemon it was interesting to me that you see your mo but not your bs-I think I'm seeing too many doctors.
GiGil, thanks for the info, sounds interesting, I will look into molecular breast imaging.
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Susannah, I saw my BS at six months and one year, and was absolutely shocked to hear he doesn't want to see me for another year. I think I'll continue to see the onc on a six-month basis. I am, after all, suffering along with arimidex and the least he can do is listen to me whine!
If I were you, I'd ask why your docs want to see you so often? Might be a policy at your hospital, might be your doc's personal preference, but it's probably a good idea to understand their motivation.
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Thanks, Susannah, no offense taken. I was also worried about false positives, but much more worried about false negatives having received so many from plain mammograms. When I had my first MRI shortly after my diagnosis, I was relieved to hear they saw nothing in my other breast, elsewhere in my BC breast, or in my nodes even on that overly sensitive machine. However, that did miss a little micromet in my sentinel mode, as it turned out. But I don't feel overtested or overbiopsied yet. Instead, I feel underscrutinized, hence my pushing for the yearly MRI going forward, at least for now. My BS (same as Brookside's) is at a pretty research-forward cancer center so I will hope that they'll get their hands on breast thermography or molecular breast imaging fairly soon.
I seem to be on a six-month schedule to see my MO, including in a couple of weeks. Not sure where that schedule is going in terms of frequency, but I think it's at least a ten-year relationship, which is great because I adore her.
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so interesting how different the standards are! So much so that "standards" is probably the wrong word. I am seen every three months on a rotation with my MO, RO, and BS. None of them takes blood (they've declared it unreliable and therefore unnecessary), the appointments are over in the blink of any eye (I feel rushed out even though I usually show up with a list of questions), and the only thing they do that I find has any merit is a clinical breast exam. Other than that it seems like a formality that doesn't accomplish much. I know I'd feel a little more secure (even if it's clinically unproven) to have blood taken, but they won't do it. Not sure if it's across the board or if it's their policy with just early-stagers like myself.
The current recommendation by my team is two scans per year, alternating mammo and MRI. Each doctor warns me that the MRI might not be covered, but I will pitch a fit if and when that happens. My ILC was only detected on MRI, and they all agree that this alone should be enough justification (it's not uncommon for ILC to go undetected via mammo). I don't know when I will graduate to a different schedule.
Gigi, I am intrigued about the molecular breast imaging. I saw a Ted talk on YouTube about it, and it looked perfect for someone like me who has dense breasts and a tumor that didn't show up clearly on mammo or ultrasound. There is a hospital in my area (Lahey in Burlington, MA), not totally convenient for me (but then again I'm spoiled with quick access to top hospitals in Boston), that offers this type of imaging. I might investigate this option, especially if I get the runaround about MRI. It would probably mean switching teams and could be a little complicated, but still probably worth my looking in to. I did find one article that suggested the molecular imaging was a higher dose of radiation. So that's a question I would want answered. However, I'd rather have one reliable image per year at a higher dose than two that don't show a clear picture ... If that makes any sense.
Also Gigi, I've read (but can't recall links to share) that thermography is not as promising as it sounds. Apparently it's safe but not very reliable, if I recall correctly what I read.
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Holy cow, if you don't check in for a few days around here, ya sure do get lost in pages of conversation (all good of course since that is what message boards are for!) but was hoping that our Kate has checked in by now and I see that she hasn't....
Sew and Joan, what a GREAT photo of the two of you! The sweater is gorgeous and so is the blouse so I concur.
Josie, the bed and wall color are also beautiful. LOVE that headboard!
I have no help for Red on the creams/lotions cause I was blessed and did not have any true issues due to my abbreviated albeit intense course of rads and the fact that I am blessed with skin that rarely burns, even in harsh sunlight (that Greek olive skin is definitely a good thing here) so my Eucerin worked great for me. I had a little pain near the end of my week and it was around the nipple and I used cold saline and I was good to go in a few days.
I am seen every three months by one doctor or another, even with my DCIS due to the clinical trial for my rads (so I see her twice a year) and my BS sees me twice a year and one of those is for my mammogram (she piggy backs the appt) and I see the MO twice a year and my gyno and PCP each once a year. That is a whole lot of doctor appts! Wow, writing them out made me realize why I am always running around like a chicken with my head cut off as the saying goes.
I too am working on getting sugar out of my diet with limites success. The thing is, I was NEVER into sugary desserts or candy until my starting my AI! Go figure. Now, I crave a milk chocolate candy at least once a week and have been having two hershey kisses (small and they work) instead of a whole candy bar. Sigh....weight gain is HUGE since Aromasin. I had lost a lot of weight on WW and was doing so well and then BAM! BC reared its ugly head and I guess I lost some ground although I am back on the program and doing well although losing slowly.
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I had regular mammo plus MRI at my one-year checkup in December, and am now on the one-year schedule. I think for next year, I'll switch to the 3-D mammo and skip the MRI. Here's my reasoning: The MRI after diagnosis identified a second area of interest, ergo a double lumpectomy for me. The lump turned out to be ALH, ADH, papilloma, and a couple of other benign cellular changes, to which I am very happy to have given the boot. THis year I repeated the mammo and MRI, and all looked lovely. I'm feeling pretty secure and can maybe wait a year for another MRI. Or maybe not. I have about six months to decide.
Like Gemini, I've heard that thermography is pretty unreliable. If it were available, I'd certainly partake, but in addition to an established methodology, not instead of. I have not heard of the molecular thing, but hope that will appear at my hospital asap, so I can add that as well.
I have no concern about false positives; it is the false negatives that creep my out.
April, I've been happily noticing that you've been creating longer posts. Does this mean that horrid arimidex finger pain is better?
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I wish Brookside! I am just powering through it and getting used to typing with pain and although when I stand up to walk, I look about 90 years old, I am getting the hang of standing for a moment and stretching before moving. I type a lot for work so had to get used to typing with pain. Also, I take a pain killer and have had them for years for the knee I was going to have replaced before getting hit with the BC stick. I had lost 80+ pounds and was ready to schedule my surgery knowing that I would not wear out the new knee with my fat a$$ when I was diagnosed. Now, I have gained back 33 lbs! UGH!
Also, to be honest with you, after two surgeries last year, I am in no hurry to go back under to have another one plus I missed 23 days last year (counting doctor's appts etc) so need to build my sick time back up (the paid sick time) before I go out for 4-6 weeks for the surgery. Not even remotely interested right now.
Ok, back to work! xo to all of you!!
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April, good to hear from you. I think as you move farther away from active treatment it will be easier and easier to loose that weight gain, at least it has been for me. I hear you about looking like a 90 year old when I stand, but a few moments in one place is usually enough to convince my body to remain upright. And, for you, you quit smoking thru all this too, and that is one HUGE plus to the whole thing. That alone is doing wonders for your body. Myself, I'm wondering how this body will act when I get off the AI in 2 years. I'm also torn about wanting to continue to take it.....although at last discussion with my MO, he didn't want me on longer than 5 years due to the osteo issues with me.
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Yes, I also stand sort of straight and wait for the pain to pass. Makes me feel pretty darn old. Congratulations on the weight loss, April. With or without the "return," you've achieved a very big deal. And yes, a little time off from surgery would be nice.
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April, thanks, she loves the new bed.
I'm back on WW.Did ok last week until Sat and Sun.
I had a funeral to go to this morning.A good family friend and neighbor.He had leukemia.It was so sad.I am glad I went though.My parents and brother and sister where there.There are six of us kids but at least some of us came.
I really hate Cancer.My brother that came to the funeral told me today that he has Prostate Cancer is is currently going through Radiation.Wow I really had no idea.Apparently everyone else in the family knew but me.They knew I was going through a lot lately with my job.I was kind of hurt they didn't tell me.Apparently he has stage 2 which is very early stage and doesn't need surgery.But he's only53yrs old.
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(((Josie))) They probably wanted to shield you after your own diagnosis and such a recent one at that! It really is unlikely they did it to hurt you sweetie. They sound like a great family who want to make sure you are not freaked out by the word cancer again so soon in your own immediate family. At least that is what I "think" is likely happening...you would know better than I about this.
I walk like an old lady for sure! And, I am now 14 months from the last cigarette I smoked and NEVER want to go there again. I don't even miss it! And when I do, I puff on an e-cig for a few minutes and it all goes away. I know, the govmt is looking into those too, but I use them so little, not at all worried. I am back on WW this week and starving to death...LOL
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Thanks April.Were in it together WW.Let me know if I can lend some support.We did great till this weekend and sat and Sunday we totally fell off the wagon.Sunday DH ordered himself a pan pizza from Dominos and ate the entire thing.Oops!! LOL.But he did really well the rest of the week before that.
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April so good to see you posting. You have accomplished a lot with your weight loss goals, even gaining back some isn't much. Kudos to you I know how hard it is to do. Quitting smoking too, your like Wonder Woman!
Josie sorry to hear of your brothers DX. I am sure they were not wanting to worry you. My family does the same thing, it is frustrating but I know they mean well. I think honestly and openness is better but I cant change them.
I was never afraid of false positives only the false negative lurking and for me they were. I look forward to seeing my MO after getting my pathology, I don't think he is going to be surprised but I do know he will be happy he led me in the right direction for MX.
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Lemon, thanks.Yes my family can get pretty weird as far as their own medical problems.My mother is open like me but my father pretty guarded on his medical problems and addiment that we not talk about it on social media.Not that I would.
My other brother has some medical problems and still hasn't really told anyone what is really going on.I know it is very personal but as your family you are there for them if they will allow you.I hope he will really tell my parents what is really going on soon.His WBC is really low and They are concerned with that.
How are you feeling Lemon? Hopefully ok.
Kate where are you?
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I went back and found out Kate last posted on May 14.
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thanks to all you sweet and busy ladies who took the time to write out your scan and doctor visit schedules.
Brookside, I will take your advice and ask why I have so many visits( though I see from your posts that I'm not the only one). I see my mo every 4months now, BS every 6 months, and PCP every 3months (to monitor my hypertension). Plus the other cast of medical specialists that we all see.
April, I'm impressed that you lost 88lbs! I know you can get back on track. Recovery is always up and down, but you seem headed on the right trajectory, including your giving up smoking.
Josie, so sorry to hear about your brother. Surely your family kept the news from you out of love. Please keep us ousted on his recovery.
Kate?
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