Calling all TNs
Comments
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Interesting about iodine. I recently attended a presentation by a naturpathic doctor named Sat Dharam Kaur. She's written a book and has a healthy breast program and she talked about the importance of iodine among other things. I recall her saying there was some sort of seaweed or kelp that supplies a lot of iodine (I'd have to recheck my notes). If you Google her name "Sat Dharam Kaur" you might see someting on her website about iodine.
Sherri
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When I was diagnosed 7yrs this Christmas I was told everything in moderation with no particular diet and to treat the arm with the aux clearance carefully (don't carry heavy things etc,) I went dairy free (have been a veggie since my teens) started powerwalking, and as far as my arm was conscerned I had a job to do as an electrican's mate and fetching and carrying was part of it.I carried on as normal as I really didn't have an option - but to be honest if I'd any sign of swelling or aching I would have stopped. Last Christmas I was told I no longer needed to be seen at the breast clinic. My onchologist gave me a big hug amd sent me on my way saying I'd done all the right things, and nowadays I'd have been told to go on a low fat diet (preferably dairy free) daily excercise of which power walking is an excellent form,and to keep as slim as possible.
Josie x
I'm not out of the woods yet but I'm well on my way to the 8yr 'all clear'. My tumour was so aggressive they thought it would return before chemo ended, and to be still ned 6 1/2yrs down the line is fantastic!
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Josiemarie: Thanks so much for posting. Our diagnoses are similar. And you are an inspiration!
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Josiemarie, my stats are similar to your's: Satge 2B, 1 positive node, grade 3. I love your post! 7 years! I'm going to repeat that in my head all day. May I ask why dairy-free? I have gone dairy-free before for 3 years when I was vegan years ago, but is there any particular reason why? I love cheese, but I'll do anything to remain healthy and remain here.
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Well my story is pretty similar to everyone elses on here, minus the bowl of supplements. I was diagnosed in March 17, 2009. I found the lump myself because it was a little sore, it was right where the wire on my bra ended on the outside edge. I didn't have insurance at the time, so I waited it out a couple months to see if it changed or did anything odd through a couple cycles. It didn't! So I went in, got an exam at my pcp, she sent me for an ultrasound, they ordered a biopsy. I met with a surgeon, she said lets just take the whole lump out, I'm sure it's nothing! So I went under, had the lump removed, woke up in recovery. She said it went great, and didn't have anything to worry about, she'd call me Friday with the good news! I knew, in my heart all this time it would NOT be good news!!! So when her receptionist called me Friday, and said can I please come in to meet with the surgeon I knew! I met that next week with the Oncolosist, started chemo April 1st. I had to do the 1st chemo of A/C with no port as the doctors that put them in are limited in my town. The following week I got the port put in and continued on for the 4 cycles of A/C, then followed by 12 weeks of Taxol. I didn't have any side effects from the chemo other than towards the end of the 12 weeks. I was beat, just wore out and achy!!! I waited 4 weeks, then went in for my bmx. I had tested positive for BRCA1, so we removed both breasts. Because we did the chemo before mastectomy, the onc is not 100% sure on the positive or negative nodes. Some were enlarged on the original CT/MRI scans but they were never biopsied. They said it could be a 50/50 that I had some positive nodes? Great isn't it? The path report says 22 removed 0 positive. I had a horrible time recovering from the mastectomy on the left side, over 2 times the anticipated healing time, it was seeping, and nasty!! Finally it recovered enough that I could do my 35 rounds of radiation! That again wasn't so bad until around the last 10 treatments. My left side freaked out again, got seepy and fried!! So the last radiation treatment was February! I am anxiously waiting for reconstruction now October 6th in NOLA!!!
I don't take any supplements, but probably should I suppose since I can't stand the good stuff like veggies! I have been told to have my vit d level checked since i'm in the rainy NW. I also don't want to get in the habit of taking 20 different supplements every day, and especially not knowing if i'm not low on something? Make sense?
My Dad's mom had breast cancer 20 years ago I think it was, don't know many details. She had a mastectomy on the one side, no treatment and is doing awesome!
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OMFingG! The biopsy came back from my "seroma"/8 cm cyst on my masectomy scar tissue: they thought they saw breast cancer cells! The slides of the fluid came back negative, but they can't be certain because they saw them. I'm waiting for the onc to call; the breast surgeon says I'll be doing a PET Scan and he will remove the cyst. WTF!!!!!
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Violet7, how confusing - I hope you hear soon. Hang in there! We're all here for you, with fingers and toes crossed.
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Hi All
I was diagnosed in April last year as Triple neg, had a lumpectomy, 4 doses of A/C and 35 doses of rads. I finished all treatment on 30 Sept 09. Just had my first mammo and so far all clear. Only see Onc Dr once a year down in NZ , with an annual mammogram for the next 10 years. Have to admit I am still very scared. Interested to see that some of you have 6 monthly mammograms.
I have only had 1 hair trim so far!!
Thanks for starting this thread Titan.
Pink hugs to all
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Hey zuzee! Great to hear from you! I was just told that I can go to having only one mammo per year....not sure if I like that...I think I want to have the mammo at least every 6 months for at least 3 years.
Glad to hear that your first mammo was CLEAR! That is just awesome news! Love it ..love it!
I have also had just one hair trim..had it colored twice though...my DH thinks I should go with a different color every time! Maybe I will..she said ..mom..this is the new you...keep changing!
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Violet - I'll be sending you some strengthening prayers to help you get through this phase.
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dsaouttahere: I sent you a private message : )
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hey gc lady: thanks for the private message...honestly and embarrassing i think i'm not savvy to doing this...how do i get to my private messages???!!!
dsa 0 -
Violet,
My thoughts and prayers are with you. My second diagnosis hit me like a ton of bricks. Here's hoping all is B9...
Linda
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Violet,
I'll send positive thoughts your way.
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Hey Titan and All,
I get blood work done at least twice a year. It's my workplace that has representatives from a lab (LabCorp) come in and does our bloodwork on an annual basis. We get results in 48hrs. They then give us $50.00 off what we pay from our monthly paycheck on medical that month as a perk. I do this at work just to keep up to date and see where I improve, or to know if I'm falling short in my various eating patterns, see if something looks out of place and other tests need to take place, etc. These reports will flag if something reads too high or too low. They then send us the same detailed reports online, and then mail a booklet with the paper copy of the Lab reports. These reports are what your doctor reads when she/he sends your blood into a lab. We can send it on-line to as many Doctors that you want...if at all. I like be (and let them know) as involved in my recovery as much as possible. Some people don't, and that is ok too.
My Oncologist, however, does do blood work when I now get checked every 6 months. I look to see her results too. I want to see what they are looking for. The Alkaline Phosphatase levels, the cholesterol (HDL & LDL) glucose, white and red blood count levels, and a host of other things. It's several pages long, but I want to see the 2-page lab report that indicates the range where I should be. It will even show when I have some inflamation like when coming down with a cold. People are funny. They can go to the Doctor and say they are doing just fine and eating right...But, the blood work tell the truth.
Your Blood work is good for 60 days. If I get it done once, there is no need to pay for the same thing again. Nice timing of the appointments this way. Those bucks are just as good in my pocket as the Doctor's offices. ;-) We network and share this kind of information in my support group I founded in 2008. There was nothing in my town for cancer people. Just the usual go to the Doctor and them interested in asking for your insurance card and wanting your co-payment.
Heck, I feel we should mean more to them than that. So, I also launched a web site with various national links on it at Thanksgiving. I have breastcancer.org as a link as well. My surgeon even linked his office site to my page (www.havenofhopeonline.com). That was a nice surprise! I love the breastcancer.org "live chat room" and the availability to have private chats as well. The people in the chat room helped me a lot. They guided me through everything. They even helped me name the support group over a year ago. Gosh, there had to be about 20 of us on-line in the chat room at that time. It was fun for all of us. The boards are nice too. It is great to have a place to network with others going through the same thing.My Oncoloist has me on Vitamin D since last Dec. because something was a little low. Other than that, I take a one a day vitamin, omega 3 fish oil, and turmeric. The Radiologist had me take it when I was on Rads. I just continued.
I try to stay busy...on a committee of another group that started a support group too. I don't have time to be sick.
Too much to do to help others. Just trying to pay it forward. My treatments were not done in my hometown. I was living in a different state at the time. My team of Doctors worked all together in my care. They are a wonderful group that fight this fight With their patients...And, they always dish out hugs when they see you.0 -
Hi Lee!..and you are 3 years out too! Congratulations!
And Violet...here's a big hug for you....hopefully you will hear the word B9!..and those breast cancer cells are DEAD ONES!
Let us know what is going on....
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Violet - my thoughts and prayers are with you and that the final results will be benign. You've been through too much. Enough...enough already!!!!
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{{{{Violet}}}}
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{{{{Violet}}}}
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{{{{Violet}}}}
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{{{{Violet}}}}
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Fingers crossed for you Violet!!!
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Thank you so much for the lovely supportive energy. I have to wait until Monday afternoon to meet w/ the onc, who will tell me he is ordering PET Scan and having the breast surgeon remove the "seroma" for further testing, just what the breast surgeon told me by phone. I am horrible at waiting and can't stop crying. I asked if they could call me in some Xanax, but it doesn't look as though that happened yet. I have a friend coming this evening to distract me, another tomorrow, a bunch on Saturday (there will be Bloody Marys), and I don't know how I'll manage Sunday and Monday yet, because I feel like I'm losing my mind. I think it just can't be so soon after chemo (March 18th was my last TAC). The two slides were negative, yet they can see cancer cells whatwhat. But I have been dxed with endocervical cancer, skin cancer, and breast cancer, it's hard to be optimistic. I go straight to my kids - 11 and 7 - and it kills me to even think I may not get to see them and hold them, raise them, etc. My daughter's beta fish died this morning and she went to pieces. How will she be with losing her mom? And my son rubs my fuzzy bald head and kisses me and tells me "I love you, mommy, you are so beautiful." I try to stay positive, I usually am and I'm usually easily distractable if you wave something shiny in front of me. Then, there's waiting for results. AAARRRRRRGGGHHHHHH!!! How do y'all deal with waiting?
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Violet...you are not going to DIE..DAMMIT....It's a few fricking cancer cells...and you will get rid of them....You have been through too darn much...just keep hugging those kids....they are your biggest support.....I know you are freaking about what they are going through too..and that is normal..dang..cancer sucks..that you and your beautiful kids have to feel pain..I hate this, I hate this, I hate this..
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Violet - don't go to the dark side, even though I know it's very hard not to!!!! Surround your self with positive friends and family. Don't let anyone take you down the dark path. Waiting is the absolute WORST PART!!! I am sending big hugs your way!!! (((violet)))
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Hugs to you Violet.
We need a cure, Ladies. AND WE NEED IT RIGHT NOW!!!!!
Rant over.
Navy
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Violet your post brought me to tears! Please try and stay positive, I know it's hard. Hugs your kids extra tight and enjoy your time (and the bloody mary's) with your friends!
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Hey girls, what a great place to meet up. Honestly I had never heard ot TN breast cancer when this all happened. At first I thought it sounded positive, but my Onc. corrected me. The other day at Relay for Life one woman who was going through chemo. was telling me her DX and at the end said, "I'm just thankful it's not that Triple Neg. stuff that kills." then she asked me what I had. I nicely corrected her and told her that any cancer can kill, we just have to fight it differently. I know she felt crappy for what she said and pitied me. I decided it was her problem, not mine and that I'm probably a better fighter than her anyways.
See a bunch of my friends here! so many of you know what my treatment was. Lumpectomy, T & C times 4, e weeks apart, and 38 Rads. 5 of them were boost. Finished it all up in November. Going for my first hair cut next week.
I also had some moles removed that showed abnormal growth. No one said the C word but they want to see me annually now. Just another doc and a few more scars.
I gave up worrying about dieing a while back ago and choose to focus on living and living healthy. Giving up wine, cocktails and the occasional beer have been hard. My onc. told me a small glass of red wine at night wouldn't be harmful.
Many of you know my Mom went through this disease at the same time as me. She is not triple neg. but did have more radical surgery than I did. Of course age had much to do with that.
Okay, time for some smiles
Looking forward to the weekend. Going out with couples date night on Saturday. Once again there will be cocktails and wine with supper I am sure. Maybe even after dinner drinks at home. I'll be the one with the tiny glass of wine trying to make it last for 5 hours. 0 -
Pauldingmom - it's always nice to hear from you...I really like your attitude!!
Sherri
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I was happy to see you here too. We gotta get Meece over here.
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