Calling all TNs
Comments
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My gyn mentioned the possibility of endometriosis within the uterine wall. Squid, what you have been through sounds horrible!!! I was very healthy pre BC. Bad car accident and a spinal fusion, but other than that, pretty much OK. I bet there is indeed a lot of co-morbidity. There is still the very troubling and mysterious TNBC. Since I have both (hormone+ too) I watch my onc really cringe whenever I bring it up. He is very up on the scene, and tells me all we can do, is watch and wait. Blah.
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daffodil45,
I have had a lot of nerve damage from the surgeries....so I was a bit tired when this BC came along
I am still learning all of this, do you mind sharing more about having both hormone + and TNBC? I know my Onc was not jazzed about me re-starting estrace due to this possibility.
I know, watch and wait. Big Blah!
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MBJ : Would ask your doc what he means by "thick" blood and how it's measured when you see him? I'm wondering on what basis he made this judgement?
My vit D level was low (in the 20s), so I'm supplementing, too.
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MBJ - I had uterine fibroids too, about 8 years ago when I was 30. I would get horribly painful & heavy periods that would stick around for 2 weeks. I had the fibroids removed and had an endometrial ablation in hopes of holding off any new developments - it worked, thankfully.
I have never had any auto-immune issues or chronic illnesses. I was actually very healthy before breast cancer. I don't think my PCP would even know who I was! LOL The only doctor I ever had a need for was my gyno.
Kittycat - love the new picture!
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Titan: Re vitamin D levels... I didn't do anything special to get to 79 - maybe my levels were always okay, I'm not sure. I do consume sources of vitamin D (fish, milk, soy milk) and take a multivitamin, but it's only in the past 2 months that I began taking 1000 IUs of D3 regularly. If I've been out in the sun that day, I don't bother though.0
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I have a lower than normal body temp and I believe I have thicker blood as well. I also clot very quickly and had a blood clot for which I was prescribed coumadin after my masectomy (in my arm). Oncologists are also hematologists. I asked the receptionist at my onc's office if there was a connection between blood and cancer and he said "yes", there is a connection and also oncs need to be hems to understand how the chemo is affecting your blood during treatment. Very interesting.
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Ok, I'm catching on here. What is being called thick blood is hypercoagulability, so clotting times are abnormal. Interesting question to ask the onc next week. I've never had clotting issues except when on coumadin post-surgeries.
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I had my clotting times calculated.
Pre-teen, I was a bleeder. I had to have Vit K shots forever to help with clotting. Around age 16 (before hodgkins diagnosis) they couldn't get good blood out of me for anything, so my clotting times were taken. Ever since, I have had very thick blood.
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squitwitch42 - I have not had problems with my periods or endometriosis or anything like that but prior to being diagnosed with BC (about 4 1/2 years prior) I was diagnosed with hyperthyroid (graves disease) and had my thyroid removed this past January right after being diagnosed with BC. The thyroid was non cancerous.
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Hey Ladies...there's an interesting thread on dense breasts under Advocacy..New Mammo Guidelines. 6X more likely to get BC-call for action.
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I also had Uterine fibroids, prior to BC. After chemopause my periods came back with a vengence. My gyno recommended endometrial ablation (Novasure) but my uterous was so big he wasn't sure it would 100% work. I have my records from him now since he passed away and he noted that my uterous was the size of a 15 week pregnancy!
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I was diagnosed prior to BC with rheumatoid arthritis, which is an autoimmune disorder. Not sure if there is a connection, but I'd be curious to find out.
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Thanks everyone for your replies regarding uterine fibroids and other pre-existing conditions. Because I had a friend who also had BC and fibroid issues, I though it would be worth asking about. I had an ultrasound on my thryroid a few days prior to finding a lump on my breast. I knew something was wrong with me and the dr's couldn't figure it out. If you have never been to breastcancerchoices.org, I encourage all of you to check it out. They talk alot about Iodine and how we are all low in it and that is why Thyroid Cancer and Breast Cancer are on the rise. I supplement with the "iodine protocol" suggested on the site. It supposed to help with dense breasts, which I have, thyroid issues, which I also have, and fibroids. In fact, a very non-invasive way to treat uterine fibroids is to paint the uterus with iodine! Another thing that I have tested on myself, is that I have painted over the counter iodine on three moles that were starting to change and they got lighter in color and receded a bit.
I finished chemo March 1 of this year and have yet to have a period. My onc said it can take 6-8 months to return, if at all. I guess I will see (or not) if the iodine has done anything. I have been on it since mid-september, when I was diagnosed last year.
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Retrievermom: I never really questioned my dr on the thick blood. I will have to ask my nurse when she gets back in town, who pokes me weekly. When I was in the 40's for vit D my dr. put me on 8000 mg per day of VitD3+K1. I know that you need to take both in order to absorb it. Some onc's put their patients on emergency 50,000 per week to get them back up to optimal levels.0
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Jenn3: that's a good question! Since antiinflamatory supplements are supposed to be good for BC, I imagine that would also be helpful for rheumatoid arthritis. I don't know so much if they are connected but it does indicate your body is in distress, doesn't it? I had chronic fatigue or adrenal exhaustion, as my dr likes to call it, prior to diagnosis. This seems to be very common before the BC diagnosis, too. Lots of stress, no sleep, always in pain, always anxious. I am still being treated for this!0
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Meece: After I had the myomectomy, I read a book by Christie Ann Northrup, who recommended eliminating all white foods: cheese, milk, white rice, potatoes and eating lots of fiber, vegis and low fat foods--no meat except for fish. I did this on and off for years to help control them, but the older I got the more off balance my hormones became. I blame this on all of the BC pills and HRT.0
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JenC: I swear that the thyroid and BC are related!0
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I was pretty healthy until this whole BC thing came along! Stupid Stupid Cancer!!!
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Kittycat: OMG you look great as a brunette!!! You are so beautiful--both as a blonde and as a brunette. Cancer just sucks!0
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MBJ - thank you. I changed my profile pic again to another black wig! LOL! I am actually a brunette naturally, but have been higlighting it for 15 years!
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Kittycat - love the photos.......I really need to take more pictures.
MBJ - something that I found very interesting and caught me off guard was something my sister said. She had come with me to a follow up visit with my onc two months ago and she had asked the doctor if the fatigue problems I had for the year leading into the BC diagnosis was connected. I was shocked, I didn't realize that my fatigue was an issue or that it was noticed, but in hinesight I guess my energy levels were a lot lower and I wasn't nearly as active as I had been. The onc said that he thought it was a possible connection, but couldn't confirm anything. Hmmmmmm
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Jenn: I knew something was up and I had been trying to figure it out for at least 3 1/2 years why I was so tired. The problem was, did I need hormone balancing, my thyroid checked, just a vacation. I discovered I had cancer by accident.
Kittycat: OMG! Another great picture. I am naturally brunette, too. When I lived at the beach and spent too much time in the sun, my hair would have tons of natural, dark blond highlights in it. I think I need to find a balance between the two--I wore my brunette wig today, and it felt too dark after being blond for two months!! What's a girl to do with so many choices!
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can any one tell what is iodine?
What are the symptoms of thyrods problems?
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newalex: go to breastcancerchoices.org and click on Iodine! Symptoms of thyroid problems are tricky because they can also point to hormonal imbalance, adrenal issues or other issues with the body. I read two books: Breast Cancer & Iodine, which goes into great detail about the thyroid, how it works, what happens when it doesn't and how we all need more iodine in our diets. The other book, What Your Dr. May Not Tell You About Breast Cancer, lists symptoms in the back of the book so you can figure out exactly what symtoms point to which diagnosis. I go to an integrative dr and I wouldn't recommend treating any thyroid or adrenal problem without a knowledgeable dr. However, iodine is something anyone can do on their own. There is also Yahoo Groups which has an iodine support group.
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Fatigue prior to a BC diagnosis is called "para-neoplastic syndrome" and is really common. I had been to my MD multiple times in the yr leading up to my dx and my MD could find nothing wrong... She said it was my lifestyle (job, kids, stress, etc). In hindsight, I realize that my body was trying to tell me something. In any event, para-neoplastic syndrome occurs when the body is trying to fight off the initial cancer up-swing.
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Michele-I didn't know there was actually a name for it. Not that I am happy to have the diagnosis, but I feel better know I wasn't crazy either.
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I was diagnosed just over a year ago. I had a lumpectomy and 3 lymph nodes removed. My diagnosis is IDC Triple-negative, Stage 2A, negative lymph nodes. I had 6 rounds of chemo (3 FEC and 3 D), which finished in December 2009. In February 2010, I had 20 radiation treatments. I am currently on a clinical trial treament which is completed in August. I have a question for everyone. When does the year start? Diagnosis? surgery? end of chemo? end of radiation? I like to think that the year starts with surgery, when the tumour is removed and there is no visible trace of cancer left in my body. If it is the surgery date, then I have already survived one year! I have been told that with TN breast cancer that if you survive 2 years, then there is a very little chance of it ever coming back. Is that what you have heard?
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i heard 3-5 years
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Well, I just hit the 2 year mark, had an MRI, it was clear (yay!) except for an ovarian cyst, which just ruptured yesterday! So now I'm REALLY clear! Just full of fluid! Haha. I'll take that over cancer any day!
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Great news daffodil....I wish you many years of clear MRI's.
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