CALLING ALL STAGE I SISTERS
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Carollyn ~ The only Vit K I get is 10 mcg (13% of daily recommended) in my multi, so that does not seem to be enough. I'll check into that more, thank you for bringing that to my attention.
Sheila ~ Thank you for the "looksie" at your file. :=) It's nice to hear that for the CA 27.29 to be a couple points up or down is okay. (that is comforting)
Redbarb ~ Thank you for the start of my "positive" direction.
Renee ~ My Rads & Onc are in the same Cancer Center & Center for Blood Disorders & I assume they use the same lab. The facilities are right next to each other & I had blood drawn at the same spot. My Onc's office has been the only one to order the CA 27.29 for me. I have heard that different labs can have different ranges.
Flo ~ I thought I'd be at least at a 52 myself, I'm still bothered by the 32 for my Vit. D3. I'm one year out from Rads. I wonder if I should up my dosage. I don't want to overdose on it, but maybe I need more?? Think I'll read through the Vit D thread again, though I have done that before & figured 6000 IU's was good.
Thank you all, you got me thinking on things.
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Hi guys! I'm new here. I was curious about my vitamin D level so I called my onc to request a test next time I see her. It turns out they did one already at my last appointment and my level is 12! No one ever told me about it and my onc didn't seem concerned. She said to start taking 800 IUs of Vitamin D every day. She said the only other option was intravenous D. I know that isn't true, my sister had a vit D level of 22 last year and they had her on RX D3 50,000 IUs once a week until her levels went up to normal.
I was so stunned at what my doctor said I didn't call her on it. I'll see her next Friday and I want to push for the RX D.
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There is a thread on vitD levels and ways to work with low ones if anyone is interested.
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Valjean, I read somewhere you can take up to 10.000UI's and not overdose. From what I understand there is more than 1 vitD. It is D3 that helps with your immune system and combatting the effects of rads.. Even though my level is fine my doc wants it higher through rads to help combat side effects, probably because I am also diabetic. I do not know at what point they consider you deficiant. I am amased at the wide variations of our counts. I will have to look it up, now I am curious.
Flo
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seyla888 (Sheila) - yes my doctor has me fast for all labs, including my cholesterol. I am only NPO after midnight until I get into the lab to have it drawn. We go in at our leisure, so that can be from the time they open at 8 a.m. until ? of course no one wants to wait to long when they can't have anything to eat or drink. LOL!!
I am not on any Vitamin D of any kind. I'm not sure why... I haven't had any test done to my knowledge at least not on any of the labs that I have received copies of and I know it wasn't recently run by my new primary physician. I guess she didn't think it necessary? Who knows... I have contemplated to start taking it, but how much should you take? If you aren't taking enough if won't help and if you take to much it could hurt. So... what to do? I do know my calcium levels were good. But I am taking Calcium chews when I remember them. haha! Because of the tamoxifen.
Renee
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Renee, I think vit D3 is pretty important to bc, my level was about 28 in Sept 09, but I have built it up to 45 by taking about 3000 IU's a day....Ask your doc.....a friend of mine was feeing really down and I told her to be tested and her level was only 20, the doctor had her take 50,000 IU's a day (yes! a day!) for a month, when she was retested her level was 38....None of my bc docs have mentioned vit D levels, I just have done so much research and found that it is very important to have higher levels that I always take it....I am trying to get it above 60......0
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Sheila ~ Congrats on your FIVE YEAR CANCERVERSARY !!!!!!!!!!!!!!!
Hooray!!! May you have MANY, MANY, MANY more!
love & hugs,
Valerie
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I have been reading all the threads on Vit D. Did you start getting tested for that after you started treatment or before? I have started treatment yet, but am suppose to probably by the end of the month. Should I be taking vit D and other vit. now or after I start treatment?
Barb
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Thanks Valerie.
I remember that day like it was today. April 8 fell on a Friday in 2005.
I got the call at 11:35 Am with the results. I already knew 99% was positive.
I had biopsies before and nobody had those expressions in their faces.
This time I didn't hear the words 80% benign lumps. DR was serious.
Anyway.....I answered the phone. I hang up the phone. I cried for a little while.
I took my nightgown off and threw it in the garbage and took a long shower to find myself.
It was then I said to myself I will be okay.
And the rest you know. I'm still here to tell you in person.
It was a long journey lumpectomy then re excision, chemo, Herceptin, radiation, all the scans that you ladies are already know.
Femara for 5 years which I have 1 more year to go. Started March 2006.
I'm grateful to all my Doctors, nurses technicians that they were there for me during this difficult time.
I'm also grateful to each and every one of you. You are My BC Sisters. I appreciate you.
Hugs to all of you.
Sheila
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Hi, all! Just checking in! Been away for a couple days.
Sheila...must be nice to have only 1 more year to go on Femara, woo hoo!
I watched The Proposal on Netflix with Sandra Bullock...hysterical!
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Hi Ladies: I was wondering if anyone's doctors had given them %'s of risk to the heart and lungs from radiation to the left breast? The more I hear about radiation to the left breast the more scared I get to go through with it, especially since I have heart problems with both of my grandmothers. Just curious if anyone knows any numbers. Thanks,Barb
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Barb ~ I had Rads on the right side, so I did not have to worry about % of risk to heart & lungs on my left. As for when I started supplementing Vit D, I started after my first month on Rads. I asked if I could have a test to check my level & when I found out how low I was, I added D3 to my pill box. I have always taken extra calcium, magnesium, & a couple others I can't recall right now. I asked my Rads onc (no chemo for me) if they were okay to continue & was told yes. When I started to learn more about vitamins/supplements, I added more to my arsenal. You should see my pill box!!
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Thanks Valerie, I am just struggling so much on which surgery to go with. I think I have decided then I read something or someone says something that puts me right back to square one. I know I have to make this decision by Monday so I can get started with all of this. I hate this!! I am so darn frustrated with trying to make all these decision that will affect the rest of my life and I have no idea which one is the correct one to make, medically or emotionally. I am so grateful to be able to vent on this site, to spare my husband of all my worries.
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Redbarb, believe me none of us want more radiation...When I asked my surgeon why I had to have it, he said that with radiation my chances of recurrence to my (left) breast is 14% without radiation it is 33%...I too am concerned with heart/lung damage, so I went with the IMRT (Trilogy System) for treatment, it is suppose to lessen the damage to other organs...Ask your doctor and or look it up on line to see if you would feel more comfortable with this option of radiation treatment.....0
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I wish I had found this place before I made the decisions six years ago. I had rads on my left side. I already had a heart condition, and ended up with work on it in 2006. I can't say that the rads put me over the edge, or if it affected my heart at all. My pre-chemo ekg somehow disappeared out of my records, so we may never know.
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seyla888, thinking of you on your 5-year "cancerversary." It's a milestone of sorts, and it seems to be a time when the medical community feels it's o.k. to go back to monitoring us like non-cancer women again. It's nice to get a break from all those follow-up screenings, but for us there's always that watchfullness that never really goes away. That's probably a good thing.0
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I didn't have radiation because I didn't get clean margins and decided to do the BMX at that point. When I talked to the oncologists and other doctors no one mentioned heart and lungs from radition to the left side. That might have swayed me.
Seyla Congratulations! I can't imagine being 5 years away from this so it is great to hear about people like you who are there!
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Seyla, congrats from me, too! That is just the best news......Sue
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I had radiation for 6 weeks to the left side. My Rad Onc assured me that it wouldn't hit the heart, and that my only risk could be some irritation to the pleural lining of that lung as well as the usual skin things. Happy to say, a year and a half later, I've had no effects so far.
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Happy Cancerversary, Sheila.
six years out, and I actually am having more careful screenings than I did under the group that treated me during my chemo and rads. I am still on a six month regimen but feel comfortable with being watched. I am all scanned and tested out over the past month, and I don't think there is one area of my body that they do not know what it looks like inside or out at this point. Being TN there was no HT for me. That could be why they watch me. My onc follwos TNs for studies.
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From the bottom of my heart for all the well wishes.
Sheila♥
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Congratulations on 5 years Shelia!!!
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Hello and congrats. to all of you celebrating anniversaries!
Had partial mastectomy for 3+ cm of grade 2 DCIS in left breast, resulting pathology also listed 1.75 mm of IDC grade 2, second surgery found 0/3 sentinel nodes involved. No chemo. prescribed, tamoxifen is an option after I finish rads, am leaning toward passing on it
Yes, BC being on the left side introduces the heart concern on top of lung concern. I'm prone = FACE DOWN for rads. which is supposed to better protect the heart and I'm told to breath normally. I've had 24 so far, just 1 more and then I'll have 5 boosts (for a tot. of 30 zaps).
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Face down?!?!?! Interesting. Welcome CTmom
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Congratulations on everyones anniversaries!! I look forward to being able to post that in a year!
Thanks ladies for your experiences with rads. Had my second opinion today with another ono. He agreed with the other 4 doctors that I saw. Re-excision, radiation. I am leaning towards adding chemo. Has anyone had the onco test gotten a low number and still went ahead with the chemo. If you did, did insurance cover the chemo? I would like to see my onco numbers but am afraid if I decide I really want to do chemo and the onco is low, insurance won't cover it. It stinks that you have to worry about insuracne when you;re dealing with your health.
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CTMOM: How do they decide if you are face up or down?
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Welcome CTMOM.....Now I'm really curious about your face down radiation.
Redbarb...Glad you made your decision. About the onco test if you really want it maybe your Oncologist's office have some information. The person who does the Insurance forms.
You have nothing to loose just ask if they ever had a patient with low onco score but wanted chemo and what the Insurance did..
Good Luck to you
Hugs
Sheila
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Hello everyone,
Hope it is okay to still join this forum
I was dx as Stage 1b, Grade 2 and had 3 lymph nodes removed (thank goodness none of them were cancerous). I had 2 surgeries, one September 17 2009 and another October 4, 2009.
I had 2 types of breast cancer Invasive Ductal Carcinoma and Infiltrating Lobular Carcinoma, the secondary breast cancer was not discovered until the second surgery,
Just for your general information ladies. ILC does not show up in a mammogram and was told this by the technicians and it is difficult to also find a mass and/or lump just by feeling around. So all ladies, when you are getting your annual mammograms, please also make sure that you get a breast ultrasound too, if your doctor has not requested this for you - you ASK for it and educated him on the fact of the ILC not showing up in a mammogram.
I had chemotherapy and also RADS. Chemo was from December 2 to February 2nd and I had for rounds of chemo. RADS was from March 2 to March 30 and had 23 rounds of RADS and 5 BOOSTS.
I got quite the burn (particularly in the area of the areola/nipple of which has peeled quite a bit in the past 9 days and also in the area of the under arm and going down the side of the breast to the incision. In the past week the redness in that area along the side / from under arm has turned brown (however it is now gonna remain like a tan I can tell, more like dead skin that is in the process of gonna peel off big time).
Otherwise, still feeling tired from time to time. I am finding it hard to get house work and other stuff done around here as have to use my right arm, the upper part of right arm around the under arm part if swollen (probably from radiation) and when I use it to much, bothers me big time). So watching how much I do.
Healing very slowly...
Oh, I am on Tamoxifen....
Charmaine
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Welcome charmaine....
Healing from radiation for some of us takes longer. Im glad you are done with all your treatments.
Just be careful under the sun, the skin will still be sensitive.
Thanks for the ILC information.
Sheila
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Sheila - Thanks girl..
Yes my Oncologist did inform me that my skin would be very sensitive once the sun comes out and over the Summer as a result of chemo and radiation therapy. I saw my Pharmacist 2 weeks ago and they ordered 'coppertone spray on factor 50' .
About the ILC it is my pleasure to keep all women informed about this one important bit of information that few know about... Charmaine
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