Team ILC Warriors
Comments
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kar123 I absolutly disagree with you on the sugar comment. I have read in multiple places, books, studies, journals etc. that sugar is not good for us or for anyone for that matter. You are free to beieve what you choose.
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Greetings, friends. To echo what kar123 said, my MO was more concerned about keeping BMIs in the right range. She said to shoot for keeping my BMI at 25 or below. She said keeping your weight at a good level is more important than the individual components of your diet. The example she gave was whether you have a strawberry shake every day or completely abstain from sugar, the key is to keep your BMI at 25 or below. She said studies show that keeping the BMI in the right range is the key. She said it's always good to eat a healthy, balanced diet, but she doesn't believe in sweating occasional sweets at all as long as you keep your weight in check. I usually allow myself one sweet thing each day. It might be a cookie, a Reese's peanut butter cup, or a little sorbet. I used to indulge in sweets much more frequently than I do now, but I found it reassuring that she said some sweets are no big deal.
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Just to continue on the sugar thing. Sugar itself is not the problem. Apart from the issue of weight, there is also the issue of insulin. It seems that there is some sort of connection (as already noted) between too much insulin and BC. This means that anything, not just sugar, that causes insulin to spike is a bad idea.
I was at completely normal BMI when DXed, although for me I was heavy and I had been gaining steadily for a few years by then. My fasting blood sugar was high, but still just below the pre-diabetic range, so the docs were not concerned. After treatment, I got an A1c test, and although my fasting sugar was lower by then, the A1c was still right on the edge of pre-diabetic. So, in my case, there is clearly something out of whack with the sugar metabolism, especially considering that I have now been eating carefully and working out regularly for a year, am not yet 50, have dropped 25 lbs and am at a BMI of 19-20.
All this only to say that I do think there is some connection, for some people at least, and I continue to limit high-glycemic foods, including actual sugar. My goal is to get the A1c down to 5.4 or lower.
As for alcohol, the jury is out, but it does appear to be a bad idea for ILC patients to consume more than a pretty minimal amount. I refuse to give it up completely, but keep to under 3 glasses of wine per week.
As far as I remember, a low-fat diet may be helpful for triple-negative patients, but I don't think it makes too much of a difference for the rest of us. Keeping BMI low is a good idea, and getting your fat from healthy sources is important (olive oil and fish basically), but I don't think there is any particular reason to stress over the amount of fat.
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kar123 could you please provide the link to the study you quoted yesterday? Thanks.
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Especially for us post-meno ladies, our BMI should be in the normal range, and in the low normal if you can stand it...
Okay: I did indeed run 2 miles in the red rocks on friday before my 1 year appt. I did indeed shout I"M STILL HERE to the universe! But wow was I nervous all of a sudden about going in to this particular appt. A little PTSD, I think. Usually my BP is 110/70 or thereabouts; friday it was 145/80!!! Ack! Anyway, she did agree to order a breast MRI--so I'll schedule that soon--and agreed that I would be put on Femara but not for a year. I asked about a PET and she said unless I have any symptoms--blood work shows something, or something else--I'm just getting radiated for nothing. I had a resident come in to talk to me first--it was funny--he looked at the sheet I fill out for symptoms, aches, pains, etc,--and I had only checked (out of the double-columned questionnaire) only ONE--hot flashes. He said, "wow, I don't see that in this office...ever!" So I felt good about feeling so good.
Here's waht she said about waiting a year on Tamox, then switching to Femara. She said she wanted to make sure I was in complete menopause before I started. I was premeno before I began tx and chemo put me in all the way. What bothered me was that she asked me if my period had returned--and I reminded her that I haven't bled for years. I have a uterus, and was ovulating, but because of the removal of 87 fibroids, I have no lining to shed any longer. My hormones have been checked by my gyno--twice--and she confirmed I'm definitely in menopause.
My MO said that if I'm not truly in meno for a year, putting me on femara now would be like not treating me at all. So she wants to be sure. But since I havent' had a period since 2009 (when I had my fibroid surgery) why aren't we paying attention to the hormone results from my gyno anyway?
I don't look forward to Femara since it causes joint pain and stiffness, I know. She did say if it does, we'll swap to another kind, and then another, to see if that helps. Gosh ladies. What we endure to save ourselves. I feel even more like we are soldiers or warriors--certainly combat veterans--of a type.
I haven't heard from my naturopath yet, but will share those results when I have my phone consult with him.
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Hi Ladies,
I was diagnosed with ILC on March 1st, right breast a 4+cm mass and will need a mastectomy. I had an MRI which showed a few spots on the left breast and some enhancement on the right nodes. Using a ultrasound they determined they can't biopsy the spots on the left with the US but will need to have an MRI biopsy. That and a biopsy on the right node. The biopsies are schedued for tomorrow morning.
I have very dense breast and have had several biopsies in the past. I am strongly considering a bilateral mastectomy even if the spots on the left come clean. My regular mamo in October didn't pick up the mass and I am worried that I'll continue to have to go through frequent MRIs and biopsies.
I'm going to PENN for my treatment and feel very comfortable with the BC and PS but I have never been as anxious as I have been the last 2 weeks. I am so anxious to have surgery and start the fight but I want to make sure I'm picking the right battle. I'm seeking some wisdom from those of you who have made these though decisions.
The surgery is planned for the 1st or 2nd week in April. I should know on Wednesday when I met with the BS.
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Hi Robin! I had my double mastectomy and DIEP surgery at Penn Hospital o
n January 16, please feel free to pm me with any questions!!!! :-)0 -
Hi FLWarrior,
Here is the link you requested regarding the Mayo Clinic and Sugar/Cancer Myth.
http://www.mayoclinic.com/health/cancer-causes/CA00085/NSECTIONGROUP=2
I should have put in my original post, sorry about that!
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Claire in AZ, before I was diagnosed in 2011, I was taking Seasonique birth control pills, They are the ones where you have a period every 80 some days, so you only have 4 in a yr. When I was diagnosed they told me to stop the pills immediatly, and i had a slight period , about 3 days. About 4 weeks later I had my BMX, then 6 weeks after stated chemo. I never had another period, and figured I might be done. I had the hormone tests done at my ob/gyn, and they said i was menapausal. Out of the blue 22 months since last period I had a period. Dr's made my have a ultrasound and then a uterine lining biopsy. My lining had doubled in thickness, but everything came back normal. Dr said i might have more, and might not. I haven't had any more signs of a period in the last 3 months. I am still on Tamoxifen, and will be on it for a while ( not sure how long) just wanted to let you know that my lab work said menapause, but who know ! Good luck.
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Robin, I had 3 ILC tumors on rt side, and had to have an MRI guided biopsy on left. results came back on left as atypia, but not cancer. I too had very dense breasts, and mammograms never detected any of my tumors. Because of ILC's ability to "hide", I chose to do the bilateral so I wouldnt be constantly wondering. Also, my plastic surgeon said he would have to do a lift job on the non cancer side so it would be more like my reconstructed side. I figured if he was going to do all that I might as well do the BMX and improve my chances of not having a recurrence. Good luck, and feel free to aske any questions on here or in a message. Thinking of you. It is a scary time, but you will be ok
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Hi,
Thank you for welcoming me! I really don't think ILC is very rare or unusual. I know many women in my area that have had it in the lobular glands. I love that our kind is slow moving and treatable. I believe that the cure is just around the corner and we can all plan our old age together. Hope you all have a wonderful spring.
Take care,
Nancy
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Trail2; Thanks for the post, the radiologist didn't see the spots on the left breast so there was nothing to biopsy. I guess this is considered good news but I have mixed feelings of why spots appear on one image and not another. I swear my breasts are hiding things or I'm paranoid. I'm very close to making a decision to have a double mastectomy. They biopsied a lymph node on the right which the pathologist reviewed came back positive for cancer cells. BS said if the biopsy was positive he'll do a axillary lymph node dissection.
Thanks for the support,
Robin
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Hi
Well, I did the lumbar puncture on Friday, it went well. Saturday had a horrible headache, couldn't sit up without the pain. Sunday morning couldn't move my neck, excruciating, ended up in ER. Had a blood patch done to stop the spinal leak. My normal BP is 115/70, it was 186/115. I was in bad shape. I cried through the entire procedure and continued to lay there and cry, couldn't stop. Honestly it felt so good to let it OUT!! I was just so done. Got some results back this morning, so far no sign of malignancy in spinal fluid. Low on lymphocytes which fight virus and tumors (cancer) which scared me but I read this can be due to radiation. Doc says things look good, of course I have heard that before so I will wait to celebrate to all results are in. What a fricken nightmare.
Other than that rads is taking its toll emotionally and physically. I am just a bit off, feel like I am just not myself and it feels bad. Anyone experience this?
Much love- Kim
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Trail2, thanks for the infor and for thinking of me and explaining your story with meno (now you see it now you don't, now you see it again!). I am afraid to take femara--seems to be a lot worse for SE than tamoxifen, which I've taken now for a year with NO problem whatsoever. I'm loathe to give it up, in a way...if that sounds weird (it does to me). Femara seems to cause so many more problems and I'm so active and athletic, I hate to think that something might cause me to be less so.
I guess I shouldn't worry about it just yet since I have to take tamox for another year.
Claire
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PS Lemon--I'm glad that your test seems to have a good outcome...but sorry you had so many problems with it! Rads made me feel a little off, yes...and towards the end, I'd curl up after each tx when I could and sleep for two hours! It made me more tired than I admitted...
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Claire, I was afraid of femara too, but it really has not been that bad for me. I have had, and continue to have, SEs for sure, but nothing that can't be dealt with. So far I am managing with exercise and good nutrition and I have not had to start taking pain killers, statins or bone drugs to deal with the SEs. Also, the AIs are much less likely to cause cancer or clotting than tamox, so there is an upside of sorts.
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Kim, good news on the results so far! I hope the rest of your results will be reason to celebrate with you! We are thinking of you. I'm so sorry you had such a rough weekend. Sendings hugs and love from Michigan!
~Amy0 -
Hi Robin - I'm a little over a year out from my BMX/DIEP, reconstruction and ALND at HUP/Abramson Cancer Center. All of my Drs are with PENN and are terrific. In fact, I am heading down there today for more genetic testing. I have found that they leave no stone unturned. If you would like any info that I can share send me a pm and I'll get back to you.
Janet
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Janet, I am headed back to PENN next week to follow up with Dr.Wu for stage 2 with my DIEP. I was a little upset with my breast asymmetry. I had double mastectomy and one is definitely a half cup size bigger than the other. Did you have a stage 2?
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I did phase 2 about 2 months ago. Dr Kovach did a very nice job and I'm pleased with the results. I was always a little asymetrical, even before BMX. So, I feel comfortable that they don't match perfectly. Everyone who sees them (MO, RO, BS, Gyn and dermatolologist) all remark on how good everything turned out and how symetrical they are, so I guess I'm the only one who sees the difference.
The nipples are nice too - not too big, not too small. I still have some healing going on in the scar revision area, so I don't know how that will look when healed. I had dog ears removed from tummy tuck area and some contouring lipo. I did not do any fat grafting. I will eventually get the tats, most likely from the micrpigmentation specialist who works out of the PS office. The recoverey was easy. I had the proceedure on a Friday and was back to work Monday. I had to wear a binder on the lipo area for 2 weeks, but the nipples needed no extra protection other than bandages which stayed on for 48hrs.
Has Dr Wu mentioned anything about fat grafting for the smaller side? Maybe she can even them up a bit. I've heard she is very good. If I remember correctly, she has good bedside manner and is somewhat of a perfectionist? I've never met her, but others on the board have been to her.
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Momine, thank you again for your voice of reason...i'm glad you are on our warriors thread. I tried to find ladies on bc.org that had positive experiences with femara, but couldn't find any. I know the odds--those who are having negative experiences will post more, hoping to find out how to allieviate them or to get support from others who have similar experiences.
I'm hoping my regular bikram practice, plus my hiking/weightlifting/walking/running regime will be beneficial to allieviate any side effects. At any rate, I'm not going to turn it down in a year simply because I might have problems. I was a bit apprehensive about tamox and so far it's been remarkably easy to take. I think someone here posted that the average woman gains 25 lbs on tamoxifen? I haven't gained anything!
Anyway...thanks Momine--hugs--
Claire
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Hey, anytime! Don't get me wrong, I have bitched and moaned at times about the SEs, but now that I am a year out, I can honestly say that it really is not that bad. For me the most annoying thing is pretty frequent pain in my feet. It is joint pain. But it usually goes away or lessens if I get moving.
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Mine are definitely worse from month 6 to now end of month nine - is this really the worst time? Will it start to get better now? Exercise does not help, it does at the time but then an hour or so later I am stiff and sore again even from just sitting to eat a meal.....what about taking it every 36 hours instead of 24 - do you think that would still beneift me and reduce side effects?
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Lily, I sit when I work and I have learned to get up every 20 minutes or so, stretch a little, walk around the table etc.
I have had a bad back since I was a kid. The back gave me a lot of pain over the years. Because I have been far more vigilant about my back after my BC dx, my back actually hurts way less than it used to. So, for me the net result is less pain than before. Add to this that my hyster surgeon cleaned up the scar tissue so beautifully that the more or less chronic pain I had for 20 years is now gone.
I am only explaining all this to shed some light on my perspective. When I had the chronic back and abdominal pain, I got used to stretching to alleviate it, and I got used to ignoring it to some extent. It is an annoyance, but it is also possible to get past it much of the time.
In addition to stretching here and there, I walk my dogs 2X a day, usually run some errands on foot, either go to the gym or go for another walk just for exercise. So even though I sit a lot I also move a lot during the day, usually clocking at least 10,000 steps.
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I too have improved to the point of almost nothing back and hysterectomy area pain syndromes but this shoulder one has me beat, every movement hurts and not moving hurts!! I am active (have a good few dogs to walk) but sometimes movement can make it worse a few hours later...........I have some exercises to do every few hours now but they are very uncomfortable.......anyone any tips for post MX, post rads, shoulder and arm pain for fibrosis?
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I think everyone has different experiences with the pain from AI's. Some get nothing, some get everything, and the rest fall in between. In my experience, I had pain that increased steadily and moved around for about a year and half. I really thought that I was going to have to find a way live with it, but there was no way I was giving it up. However, recently I have noticed an improvement. I still have pain but it has subsided a little. My feet and hands are what bother me the most, everything else isn't too bad. I'm still not sure if I just got used to the pain or my body has adjusted to the drug.
Lily, I know you have a lot of red tape in the medical system there, but do you think they would be willing to switch you to another AI to see if that would work better for you?
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Lily, You might also want to ask the the doctor to check if you have any lymphedema in that shoulder. Truncal and chest lymphedema often show up as pain first and not swelling. I wear a "camishaper" to help compress and support everything in that upper quadrant and it seems to have helped me alot. Had to go through many different bras and camis until I found one that worked for me.
Just a thought.
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Lily, it sounds like you have frozen shoulder, which is most likely an after-effect of the surgery. I had the beginnings of it for a while, and the only way forward is physical therapy (in other words, the exercises they gave you).
See if someone near you knows about lymphedema, because you should be checked for that. The pain the arm could be that.
What you describe does not sound as SEs from the AI.
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Thanks for your info, really helpful to exchange ideas and knowledge........No I think its my groin and fingers and hips and knees that are SE´s from the AL......interesting re lymphoedema - I had an MRI only a few weeks ago, and nothing showed up there, only "fibrosis", I did have visible swelling around ribs but that has disappeared....pain though worsens.........my arm is not swollen at all and underarm swelling is reducing significantly, I feel DRY in all my joints like I need oiling!!!
How do I get checked for LE or is it ruled out by MRI?
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Kim- I am mostly a lurker here, but just had to say that I had a lumbar puncture with terrible headache a few years ago, and if I had to do that now- while in the middle of RADS as I am- I would have cried and cried too! It was one of the hardest things ever, and I was not in the middle of cancer treatment! BTW, I had viral meningitis. Anyway, take care and I hope the news about it is good.
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