TRIPLE POSITIVE GROUP
Comments
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OMG barberchic don't get me started on waiting for the pre-op MRI. They wouldn't even schedule surgery till I did that because we didn't know if I had to do an MX or a BMX. Lucky me my period did come a week early so I got to push it up by one week. Still it was 6 weeks from my biopsy results before I had surgery! I even said to my BS "are we waiting for it to spread to the nodes?" But as you can see everything turned out great. Just hate the damn waiting.
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Thank you LeeA!
Yes, breathing might help...lol! I do catch myself holding it in! If there were only a switch on my brain so I could turn off all this thinking!!
This year flew by, but the days since the 9th have really dragged on!0 -
You nailed it lago! I was wondering if they were waiting for it to spread too! I just started yesterday.....does that make a difference??
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lago - I feel ya on the waiting for surgery - it was 5 weeks for me, but it was in the nodes. I know that it didn't get there in that time period, but that was happening in my mind!
LeeA - every one of us has something we wish we had done differently - for me, it was taking 10 years of HRT after a hyst/ooph. I ended up being 96% ER+ - and all that time I was feeding that tumor estrogen in pill form... You can't beat yourself up about that stuff, because it will suck you down a dark hole - it is what it is, can't change it or undo it and spending time worrying about it now is a waste of precious energy - you can only move forward.
barberchic - sorry you find yourself here, but welcome!
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Specialk - I'm just glad that I found a place to share my feelings and be understood. Also getting much needed feedback
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Thank you kayb!
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barberchic - time has taken on a whole new dimension/quality for me since being diagnosed with BC (I'm guessing this might be common?). It's very hard to describe but I agree with what you said about the year flying by UNTIL that moment of diagnosis. At diagnosis, everything just stood still and the one thing that drove me the nuttiest was the idea that I felt so darn good and knew I would have to go through some times of feeling not-so-good. Having never been one to calendar anything I find myself in the waiting game and watching the calendar (the calendar in my mind, that is - and on my iPhone, computer, etc.). Then there's the "how long" part - how long will it take to get through this part, or that part, etc.
I remember when my dad was ill he said (in a half out-of-it state) "you know I'm not patient!" and I've thought of that so many times since being diagnoised. I guess I'm not very patient either, but when you become a BC patient (heh) you have to learn to become more patient.
Anyway, I'm glad you found us and I'm looking forward to getting to know you.
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SpecialK, You are right about the what ifs and thanks for the reminder not to dwell on them. Most of the time I'm just thankful it wasn't worse than it was but once in a while I'll think "what if I had caught it earlier, would I have needed chemo?" (ha, that kind of moment happens on a day like today - three or four days post-chemo and not feeling the best).
On the other hand, the breast surgeon said something that I may or may not have brought up here before - and I've always been curious if anyone else has heard this or has had thoughts about it. He said that if your cells are a grade 3 (or grade 2, grade 1, whatever) they were always a grade 3 (or grade 2 or 1). In other words, they don't start out as grade 1 tumor cells and accelerate on their own (?). I'm not explaining this very well and it's probably all just part of my own rationalization process! In any case, there is no time machine to go back in and change the way things happened.
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No patience here either! I also felt good until I was diagnosed! It has to be my mind playing tricks on me, bc I feel more fatigue than before and all I can think is the cancer is taking over
I know that's not true, just too overwheling I guess! 0 -
The stress that hits you from diagnosis to surgery is very real and can do your mind in. I swore it had spread to my brain about a week after diagnosis. Before diagnosis I was in the best shape of my life, I was feeling great, jogging and my weight was very healthy as well. During the waiting for surgery phase I started getting a numbness in my face that would move all over. It was about the size of a credit card. It would stay in one place for a few hours and then would move locations very slowly.
I told my Breast Surgeon about this when I met him to discuss surgery. He told me that stress can do some really strange things to us. I was unconvinced it was stress. Turns out it was.
Since I had DIEP and had to coordinate a breast surgeon and a plastic surgeon I had to wait for over 4 weeks from diagnosis.
Taking time to breathe is very wise. Deep breathe and meditate would be very good during this time.
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I went to an integrative physician at the cancer center where I'm getting treatments this past week and she assigned the following meditation exercise - 10 minutes every day - she suggested mornings but I haven't done it yet (this was a chemo week).
For ten minutes (use a timer, phone timer, etc.) breathe in counting to three - breathe out counting to five. Eyes closed. I'm sure it's just a basic meditation exercise which I need to put into practice but since it's so fresh in my mind (and we're talking about trying to relax through this thing) I thought I'd bring it up.
nora_az, that numbness phenomenon must have been very disconcerting!
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Iago,
Thanks for clarifying the question I had about the date issue re: what date is selected to keep track of one-year without cancer, five years without cancer, etc. I was told on March 14, 2012, so I will use that as my date. Almost one year already!!!! In ways, it seems like a lifetime ago, the chemo especially, while at other times it seemed as though time were almost frozen.
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Hi barberchic,
So sorry that you have to join this "club," in some ways, yet you will get so much knowledge, strength and humour from the postings. We all have the BC diagnosis in common, yet there are so many different responses to it, as well as how each woman's body responds to treatment. It's my most sincere wish that you feel connected to several women who write regularly in this forum.
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I choose my biopsy date as my cancerversary - start of survivorship. I guess I have a harder time deciding whether my surgery date should be my NED date, or when I finished chemo, or herceptin. Weird thing is, even with surgical pain, I felt better after my MX than I had felt in years, it's like the tumor/s where wearing my body down, so it probably should be the surgery date - they did get clean margins, all the lymph nodes with cancer, so the only thing left would have been sneaky teeny single cells. and that's what all the other treatments were for.
The integrative medicine in Canada sounds awesome! Lucky girl.
I'm always amazed how fast this thread moves, it's hard to comment on everything I wanted to.
I volunteer for ACS, Reach to Recovery and Relay for Life, and twice a month in the cancer centers infusion room. I love it, but sometimes I wonder if it helps with the "safety blanket". With ACS I keep up on the latest and greatest, and in the infusion room I can talk to the nurses or even my MO, in passing, and ask any questions I have. I really love listening to the patients, they are so inspiring, and it's a good feeling you get helping them feel calmer and more comfortable, and even confirmed in their feelings - in a way having someone that's been there also gives them hope, and a little more normalcy in a very abnormal circumstance.
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LeeA I only missed 1 mammogram in 2011. Still, I had to come in with a bloody nipple, dense area on breast and a 6.5cm tumor in a barely 34B breast for them to find this and get a "changes but not typical of cancer" reading. I had a scare in 2009 in the same spot. I have since told women going to this place for mammos to switch. My BS new as soon as he saw the mammos (didn't see the US because they sent a bad disk). So don't beat yourself up. Your tumor was much smaller. Even if you had been going there was no way of knowing if they would have found it then. Remember HER2+ grade3 means you had a fast grower too. I was told by my BS I only had mine for 4 years! Usually it's 10-15 for the slower growing ones.
LindaKR I could choose my biopsy date or even the date I met with my BS (2 weeks after my mammo/us) too since the radiologist told me "we are doing this biopsy to prove our diagnosis of cancer… and if it doesn't prove it we'll do something more invasive to prove it" but I knew I was in trouble when I saw my BS 2 weeks prior. He was already talking about breast cancer being a very treatable disease. He wouldn't have said that if he didn't feel I had breast cancer.
barberchic unless you have inflammatory breast cancer (you'd know if you did and would propably have surgery already) typically these don't spread that fast, even fast growers like mine. They thought my tumor was 7cm (+ or - 1cm) Turned out to be 6.5cm, only 5.5cm of invasive so in 6 weeks it didn't seem to get any bigger or spread to my nodes. Granted the waiting seems like a life time for us. We just want it out!
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Wow. The pages turned so fast and I can hardly keep up with the posting.
Hope some of you can catch this one and offer some input about how you feel about the aromatase inhibitor you are taking. Apparently there are three different kinds of them, Famara, Arimidex, and letrozole. My onc said they are all the same medical wise but some women tolerate one better than the other. He usually started with Arimidex but since I switched from Tam, he offerred me the letrozole.
I got the letrozole yesterday. It stated that doctor monitoring is required when taking this meds, no such info for tam. Why is that? The doc mentioned the SE those aromatse inhibitor would have on our body, such as bone stiffness, bone density.
Thanks so much and have a lovely Sunday!
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meglove I have heard that Femara (letrozole) works a little better in older women (over 60). I was pretty stiff last year but this year I'm not even that stiff getting up in the morning. I do exercise (strenght train) more but I have a feeling that some of my stiffness might have been left over chemo. I am just past 2 years PFC. March will make 2 years on Anastrozole. And yes it is eating up my bones but I'm still osteopenic. They think I'll have to go on bone building drugs in 1.5 years. My spine is getting close to osteoporosis. Mom had it. I'm Caucasian, small boned, used to drink lots of diet soda, former smoker (no heavy quit in 2005). I'm like the poster gal to get it. Chemo did a job on my bones too. My density was tested before chemo and 5 months PFC.
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Lago, Thanks. I got the names of those AI mixed up. This is what I found on Wikipedia:
There are 2 types of aromatase inhibitors (AIs) approved to treat breast cancer:
- Irreversible steroidal inhibitors, such as exemestane (Aromasin), forms a permanent and deactivating bond with the aromatase enzyme.
- Non-steroidal inhibitors, such as anastrozole (Arimidex), inhibit the synthesis of estrogen via reversible competition for the aromatase enzyme.
Non-selective
- Testolactone (Teslac)
Selective
- Anastrozole (Arimidex)
- Letrozole (Femara)
- Exemestane (Aromasin)
- Vorozole (Rivizor)
- Formestane (Lentaron)
- Fadrozole (Afema)
Other
Natural
- Resveratrol
- Nicotine
- Myosmine
- Zinc
- Catechin
- Chalcones
- Apigenin
- Eriodictyol
- Isoliquiritigenin
- Mangostin
It is intesting to know that some of the natural AI could be found in grapes.
Will see how I tolerate this letrozole. May ask Onc to switch to other one if it cause me too much trouble. Keep my finger crossed.
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Good morning all! It is nice to wake up this morning and know i have some wonderful NEW friends to chat with about the things that i have on my mind! I think this is going to be my new backbone! Also I see all these abreviations, I have no clue what you gals are talking about...lol! Maybe someone will be so kind as to make me a list, when you have time ofcourse! lago- I guess I will know more after my MRI, Sentinel node biopsy ansd lumpectomy, because right now they can't even tell me what my stage is! They're guessing between 1/2. I was just wondering what you meant by having your period and having surgery?
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barberchic Typically they like to do MRI 6-12 days after the first day of your period.
You won't know your stage till surgery. Sometimes there are surprises. In my case it was a good surprise since they thought I would have at least micromets in my nodes. My BS thought for sure I would be a stage IIIA with the size of my IDC tumor but since I had no nodes I was a IIB… I even asked if he thought there would be a chance at IIB and he said probably IIIA but you never know.
Here is the list of abbreviations for newbies: linky
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Thank you!
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Woo hoo! i gotta lot to learn! Thanks lago
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Hi LeeA,
I think all of us ladies, when we were first diagnosed, did the "Why did I eat this/or not eat this?; Why did I colour my hair? Why did I drink water from a plastic bottle (lined with Bisphenol A, a carcinogen), etc. FYI, don't fret too much about missing a mammogram. I had one done in December 2010, and nothing showed up at that time. A little over a year later, March 2012, I had my first mammogram on March 12, along with an ultrasound, and the next day I was called to be told that I had to return to the office to have another mammogram done on my left breast as a suspicious mass was present, so they thought. The radiologist told me, after looking at the second mammogram, that the growth had spiculations (spikes) emanating from it, a marker for a malignant growth. . . and so began the cancer journey for me. Iago is correct is stating that us triple positive gals, our tumours grow quite quickly. When I met with my MO for the first time in July 2012, I asked him how long he thought it had taken my tumour to grow to 3-plus cm, and he stated, "Oh, I would estimate 8-9 months." Try to stay positive and strong and focus that it was caught early, when your tumour was small.
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QUESTION: Have any of you ladies chosen NOT to take Tamoxifen after you finished your surgery, chemo and radiation. I am still taking Herceptin, will be until Aug., 2013, but I am really troubled, for some reason, with the idea of taking Tamoxifen. Intellectually, I understand that is most unwise, in all likelihood, for me not to at least try it, but after all SEs from chemo, mostly, and just thinking about all the toxins in my body and all the cellular damage that has been done (have a background in cellular biology), I am very unmotivated to take it.
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I blame my cancer on that awful boss that gave me stress. According to my BS my cancer started 1 year after working for that asshole. But seriously there are several switches that must be turned on to get cancer to grow. There are people out there that eat crap, drink excessively, and sit on their ass all day that live well into their 80's. I will not apologize for living… and if you didn't live you wouldn't get cancer. My risk of getting this disease at my age of diagnosis was less than 2%. Shit just happens to you sometimes. It has to happen to someone, right.
gratitudeforlife I felt the same way but you know what, I actually felt better when I started taking the Anastrozole (still doing Herceptin). I was 5 weeks PFC. The chemo SE were finally going away that's why. I did have some SE from Anastrozole but this year they are even less. I think there might be a time when you body also has to get used to the drug too. Remember you can always quit. You'll never know if you don't try. Go for it girl.
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Hi Iago,
Thanks for sharing how you, too, felt about hormonal therapy. As you write, it feels so great not to have the SEs from chemo, esp., hot flashes and night sweats, that I don't want to go down that road again, as I rarely had a decent night's sleep for 2-3 months, which, of course, impacts one's ability to have a positive demeanour. You are correct to state that I need to at least try it. I will. Just wanted to know if anyone out there did not take it and stayed cancer-free.
You mention how stressed you were, and maybe it contributed to your cancer. I, too, had a MOST horrendous year (late 2011 and all of 2012) due to working in very, very trying, unjust conditions for a horrible, unethical, lying boss. I have read Dr. C. Northup's (?) book about the connection between stress and breast cancer, which she said is well-established as a contributing factor. I was the poster girl for great health, i.e., jogger since the age of 15, never smoked, maintained healthy weight, ate clean, etc., and I ended up with BC. Initially, I spent some time, as I am certain all of us have done, trying to "figure" out what caused BC to end up in my body. I think any of us who has had the BC diagnosis does that kind of questioning, intially; however, with the myriad of possible contributing factors, environmental toxins, taking birth control pills, drinking alcohol, etc., DNA gone awry, etc, it really is a waste of valuable energy as we will never get an answer to that question.
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Gratitude,
I finished chemo about 4 weeks ago and I'm on herceptin now. till Sept, 2013. I just started tamoxifen about 3 weeks ago. I have the complete opposite reaction as you to the drug.
My cancer was very highly estrogen positive (96%.) I view tamoxifen, which acts as an estrogen blocker, as depriving cancer of fuel it needs to survive/return. I am thrilled to take it and thus far, have had no SEs except hot flashes at night.
As Lago suggests, I would start taking it, and if for some reason your body reacts negatively, think about switching then.
Good luck!
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Gratitude,
Just read your post that you must have been writing as I was posting.
Some women have said that taking tamoxifen in the morning lessens the hot flashes, so if you choose to take it, you might want to take it in the morning. I take it around dinner time, which many contribute to my occasional hot flashes. In any event, my DH likes that I'm constantly taking off my pjs in the middle of the night, even though he is sleeping under 2 blankets!!!
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Hee hee cgesq
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Lago,
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Question: For those of you who had node involvement and chose not to have ALND surgery but did do rads to the axilla ~ Are the lymphedema risks the same for rads to the axilla as having ALND surgery? I know once chemo is over I am going to have to make a decision about the next chapter of treatment. I know I have to take care of the cancer but I really would like to avoid the whole lymphedema issue (swelling, sleeves, gloves, constant vigilance to avoid cuts, burns, bites, bruises and so many more fun things). I know the "official" statistics on lymphedema say only small proportion of women get lymphedema, but it sems like the actual numbers are much higher. If there is a better place to post the question, please let me know.
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