Calling all TNs
Comments
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i always thought coffee was bad for triple negative, i gave it up, so is it the coffee or the caffeine?? or it doesnt matter???
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Interesting Article, Wrenwood47. Basically I am triple negative except for 5% positive for Progesterone. Heard that only 15% of all Breat Cancers are progesterone positive. Anyway, I just wanted to say that during the days I got the TN (2010), I was drinking a tall glass of coffee each morning, also since I am Indian, I eat curcumin (which is a concentrated form of yellow curry powder) almost every day of my life in my curries. Disappointing that I still got it anyway.
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Loveyface - I am 5% positive progesterone as well.....................my doctor is thinking of putting me on some hormone pill, were you offered anything???? Just curious since we are similar, I am stage 1 and grade 3 though.
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Worrywort9390 - Yes, I was offered Aridimex, which I took for 3 months. I was thrilled as I had no side effects at first, but right around the 3-month mark, my side effects hit me so badly, that I was so disabled. I had severe neuropathy in my hands, legs, arms & neck. My blood test showed that my estrogen levels were really low, therefore, I feel that by taking Aridimex, it drastically reduced my ER levels even more, therefore, the severe side effects. I stopped taking it after 3 months. I had tried accupuncture and other therapies, nothing worked. I wanted to try Femara later, but doc. said it was dangerous to stop and take again, too much hormone fluctuation. I ended up not taking anything after 3 months. I was Stage IIA, grade 2. I had IDC as well as DCIS close to each other. Both you and I fall in a very small minority to be in the 5% PR positive group, but I call myself TN. May I ask you - were you using any progesterone cream on your skin before the Cancer diagnosis? I was using natural progesterone cream (hormone) from herbal store, on my skin for at least 6 years prior. It helped me with hair falling and bathroom frequency. My gyne also sold these creams in her office. I was under her care and she knew I was using the cream. Once when my blood test results came before BC diagnosis, the person who reads the blood tests, wrote a note to the doc, saying "is the patient using hormones, her levels are high"? I should have paid attention. Sometimes, I feel I imbalanced my hormones and caused my own cancer. Not sure, it can never be verified. I contacted the company who made these PR creams, she swore by it that it did not cause cancer. The first 3 years these creams used to contain paraben, later they took it out. But I used it a lot. Later, I went into my finances, and wrote down exactly how many tubes of cream I had used and for how many years. Dr. Lee recommends this cream in his book titled "What doctors don't tell you about menupause". I believed him and used the hormone progesterone. Sorry for the long post.
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kinda off topic here..but on the eating thing..have you guys tried grilling romaine (little gem) lettuce.....it is awesome and good for you!
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Dawn that is really good news. Glad to hear they will do this.
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Hi,
New here. I found out today I am triple negative. All I can say is cancer sucks!! I have a cat/pet scan and a biopsy on the other breast next week. Oncologist is suggesting I do chemo before surgery. I want to stay positive but right now I'm just mad! It's like every week the news gets worse. and I'm sorry I know everyone else has been through/going through this mess. :-(
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Idawson, my surgeon put a clip in when he did my biopsy. Another clip was put in near my nodes under my arm because he gave me an ultrasound frequently and it appeared that the tumors were going to disappear. I turned down the lumpectomy option and went for a complete mastectomy because I wanted to do everything I could to prevent this from coming back. The chemo worked so good there was NOTHING in my pathology report post surgery.
I would think since triple negative is so responsive to chemo, that it would be standard care to put a clip in during biopsy, but I don't know. Sorry so many of you aren't as confident in your doctors as I am. I've always felt blessed to have doctors who I trust, and reading other's experiences just reinforces that.
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Totally off topic, but I am in England enjoying a visit with family. And the sun is shining today!
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Titan: Sounds interesting. Did you grill the lettuce as a side dish? Put anything on it?
Gilly: Have a wonderful, wonderful trip. Enjoy your family.
Hello to all the new ladies. As you have already found out, there is a wealth of information and compassion on this board. And those that have been here a while....Like me! Will be 4 years out from DX on Monday. Sending hugs and hope to all.
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to CRS319 so sorry to hear you are having bad news reported. Sending hugs your way...and thinking...don't blame yourself for recurrences or think it's because of what you ate or drank. Guilt trips don't help at all! Nat
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Hey msjag, how did your MRI go? Did you get the results yet? I found it interesting that you said the third year is most crucial for TN's. I hadn't heard that. My Oncologist said after 5 years, in 2015, she will declare me cured. I would take the 3 year anytime.....Also, I think it depends on when one is counting from, right? From treatment or from diagnosis. From diagnosis, I am 3 years out in July. From treatment, I am 2 years, 2 months out. Regarding follow-up, the radiologist was writing me up to have MRI's almost every 6 months, until my BS interfered and told me not to do them. She said I would "glow" in the dark as I would have so much radiation in my body. I just follow the rule of thumb - which is only if you have any symptoms or lump, wait 2 weeks, and then get yourself checked. Otherwise, no scans, no petscans, no nothing, except your normal checkups, such as colonoscopy every 5 years if you are over 50, pepsimeres every year at annual exam, etc. Hoping your MRI result was great.
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lovelyface....radiation from MRI? It is magnetic...no radiation that I know of. You sure it wasn't a CT scan? They say every CT scan is the equivalent of 6400 xrays.
Re: tumour markers...I had a marker put into my breast to mark the spot before surgery. It was like having another core biopsy...same equipment...same table...it left a long metal wire in the spot that was affected. It was long enough that it was taped to my breast. The surgeon said it was spot on...easy for him to find the cells. I am assuming that wouldn't work if the areas are not close or are dispersed through out the breast area. If they are, I believe that is why a mastectomy is done.
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In response to Schatzi14 - Yes, radiation from MRI. I thought the same way you did, until my surgeon told me that the injection they give you half way through the MRI, is radioactive material. I thought MRI was the safest, most un-radioactive test, but for breast MRI's yes, that liquid they inject is radioactive. The wire stuff you're talking about, I had that done too, I think it is called wire localization. The wire sticks out, a you go into the surgical room, right? Then when you come out of surgery the wire is gone. The little chip they put inside your breast, is the tumor area marker.
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hmmm strange...I had 3 MRI's for my neck and spine and never had any injections. Never had a MRI for my breasts for maybe that is different.
As for the wire...yep that is exactly what I had.
Wow I am really surprised about the MRI and radiation. I googled it can't find anything about injecting radioactive material. That is scary!
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schatzi14 - maybe it is just for breast MRI's. Yes, they do inject you, maybe some people don't even know but when they initially set you up, they already set up to inject half way through the test. Maybe you can google - breast MRI procedure. If I find some link, I will send that you. I had a lot of MRI's after my diagnosis, and was very happy, until my surgeon told me this.
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Yes I can imagine. I did ask my MO about having any other tests and he said only if the symptoms warrant it.
I asked about PET scans...MRIs and even Ultrasounds. I guess here in Canada where we have universal healthcare, they don't do anything more than is necessary. If in fact, if they are using radiation, I don't want it anyways. LOL
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What they inject is an MRI Contrast dye. The ingredient is "gadolinium" which is a paramagnetic metal ion. My surgeon says it is radioactive material. She must know. I think they do have the radiologist involved in this test, so maybe it is something to do with radiation. I think they don't want breast feeding mothers to get this dye during MRI, because it is dangerous for the babies. The dye is injected in order to get more vivid images from the MRI.
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Hmmm I just read that...it says it doesn't use any ionizing radioactive material like Xrays.
Now I am really confused!
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I won't be surprised if my thyroid nodule has come from having had so many MRI's after my treatment. I finished all my treatments on 3/31/11 and then on 08/07/11, I had a petscan done which did not show any thyroid activity at all, all was clear. Afterwards I developed a small thyroid nodule. I am now thinking it could have possibly come from these many MRI's, I had one done every 6 months with this dye injected. I think all of us women, have to balance out our own personal situations and decide for ourselves if tests are really warranted for the particular situation. I no longer force my doctors to test me for this and that. I used to do that. I used to think I am really very lucky to get MRI's every 6 months, that way, I will always be followed up. I don't think that anymore. I would rather stay away from the hospital and all scans and tests and only go there when my symptoms persist after the 2-week or 1-month rule.
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amen!
What is the status of your thyroid now? Was there ever a definitive conclusion or just wait and see?
You did have a needle biopsy done on the nodule right?
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schatzi14 - I am gonna read up on this. I never checked the validity of what my BS told me, I trusted her completely. I haven't had an MRI for a year and a half, based on what she told me. I had one lump checked 4 different times by different doctors, but never had the MRI because of the fear of the radioactive dye. Now I am wondering why she would tell me something like this if it is not true, that the dye is not radioactive. I will read up more on this and ask her this quetion face to face. I had previously understood that for a TN patient, a doctor could order an MRI every 6 months and it is covered. Medicine is really complicated, isn't it? But we have to trust our doctors, what else can we do?
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Yes, thanks for asking about my thyroid nodule. I had two biopsies done about 6 months back, it was benign. The next biopsy is scheduled for June 5th, but I am waiting to see my bloodwork first and then decide. If the bloodwork is all normal, I won't go for the biopsy. I just hate them poking and disturbing the small area. The authorization is valid until August, so i could get it done later if I feel there is a concern. But if all my thyroid blood tests are normal, I feel it would be an overkill to do the biopsy. the only concern was that the nodule grew from 18 mm to 21 mm, but I am not too worried or concerned. Feeling a little more tired than usual, though.
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Yeah I understand. I was supposed to go and have another ultrasound on my growing nodule too. That was last year and I never got around to it. It was biopsied and was benign as well. I should get one done this summer. It has been 2 years but my blood tests are OK. My medication hasn't changed in 4 years either.
I am not sure what any of my symptoms are due to. I am getting up there so probably just old age aches and pains with a little push from the Arimidex. I will decide whether or not to continue with it after my next mammo in August.
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Melissa - those markers are so random and not reliable. I would dispense with them completely. When I had full blown cancer w/no treatment, mine was 19. After treatment, it was 11. POSSIBLY as a baseline, but the under 38 thing certainly did not apply in my case.
Ida- I did have a tumor marker with my biopsy. This whole thing is one big crap shoot, so I would do what you want. Its your choice!
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Went for my 3rd chemo yesterday which was suppose to be my last. The doctor said one more and then we will scan and hopefully start radiation. Please continue to keep me in your thoughts and prayers.
Going through it the first time is hard, but the second time is a bit harder because you kind of feel like it is a waste of time and it takes an emotional toll on you big time. If it works great you have your life and if it don't you have sickness and financial hardship but you don't know unless you try.............:( I have a UTI and we are waiting on Chest X-ray results to see if there is anything adding to by breathlessness.They said that the there is a (sp?) miracular cell difference in Taxol and Taxotere the reason there is still hope in using Taxotere when Taxol did not kill it all. Just because it came back when using Taxol does not necessarily mean that the Taxol did not work it just happens sometimes when even the smallest cell remains. She said that if it were like 3 months after finishing your Taxol treatment then they would say it did not work, but mine was almost two years so they don't consider that not working.
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Good morning ladies,
Just popped in to wish a wonderful weekend. Live life to the fullest! XOXO
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Stupidboob...sending good thoughts your way
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Lovelyface, thank you for all the info. I have not used any progesterone products on my skin.....i have no clue as to any risk factors for me getting bc or being triple negative....several years back I lost a lot of weight, am in my healthy zone, eat much healthier, exercise pretty regularly. It just happens sometimes. I too consider myself triple negative since my progesterone is so low. The oncologist says she will put me on hormones but everything I read says it MAY help me and I'm not sure with 5% if its worth all the side effects. I need to research more about it I think.
Thank you again for your reply and enjoy the rest of this wonderful weekend.
angie
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I too had the injections half way thru my MRI. The first half was just the MRI and the second half was with the "dye" I think they called it. I forget. But definitely had IV and injection half way thru.
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