TRIPLE POSITIVE GROUP
Comments
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Thanks for all the good info and responses...
Bren..I should send you my meds (morphine) they seem to keep me in the bathroom.... not C-diff but just ultra sensitive to everything...ugh as that should prove interesting for future treatments....
I saw this detox article and was wondering if any of you "detox" regularly or any tricks you can share for an easier ride with radiation and chemo before I start? ............
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Gratitude: Thanks for the link. I had to sign up to read the article but that's ok. I'll ask my doctor about it. I'm osteopenia and on Boniva (when I take it). Almost 2 years into the Arimidex and side effects are pretty much gone...a little stiffness but nothing that is unmanageable. I do worry about the bones though!
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TonLee,
You asked if taking testosterone helps with muscle, and I have been pondering that question. I cannot distinguish whether it does or doesn't, possibly because gradual increasing aging has an increasing opposing effect, I think. In other words, the testosterone may be helping, but possibly the continuing aging slowly decreases the benefit achieved. (Pun intended -- It is like running in place and not getting anywhere, but not losing ground, either!)
If I were you I would take the Karolinska study results in regard to measuring the effectiveness of tamoxifen by breast density with you for discussion with your doctor.
A.A.
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gratitude for life,
I have been checking the status of the development and approval of one particular drug for over 5 years now as it has slowly worked its way through the process of approval. The main reason I was interested in it was because the purpose of this particular drug is to alleviate some of the vaginal dryness problems menopausal women experience.
But beyond that focus for the drug, it happens to be a SERM.
I would be interested in knowing whether or not it has similar properties to tamoxifen in terms of estrogen, since it is also a SERM.
The drug is ospemifene. Perhaps you could discuss it with your health care provider and share whatever info there might be about that. I will see what our pharmacist here has to say about that and share any info.
A.A.
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Wow, Ashla, that really is a great article. Very thought provoking. Also terrifying .... so this Silberman woman was stage II, her2+, did all the stuff we're all doing, and it's still metastacized to her liver and she's terminal. Depressing. She makes a lot of really good points. Still I can't get around the fact that, even if in the aggregate, mammos detect a lot of cancers that might not have needed treatment anyway, they still don't know which ones are which. Geez it certainly doesn't help me with my newly found, cancer-induced hypochondriac tendencies! Definitely makes me think twice about having mammos in the future, given that they were useless in diagnosing me anyway. Though I would like to see if my tissue is less dense in the summer (which is around when I'm due for a screening) -- I'm referring to the discussion above re tamox possibly making your tissue less dense, if it is in fact working.
I'd be interested to read others' thoughts on it.
And was very happy to read the article about coffee and tamox!
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Thank you DanaM, Pbrain, gratitudeforlife and Iago! As of yesterday, I will be having surgery first, a bilateral mastectomy on May 13. I personally feel better having surgery first. So next I'll have all kinds of questions about that
Haven't decided which chemo to go with yet. When I hear "low dose" I wonder if it is enough. But I still have to talk to the oncologists again.
Thanks again ladies, especially for helping me to see that either route was fine and that I had to be comfortable with the decision.0 -
Lago, Thanks for the advice. They are done! But all bandaged up. I had PS do it and was told not to judge for at least a few weeks, as the pigmentation takes differently to different skin, etc. I had them done smaller than what he said was average, but choosing the color was hard. I had nipple recon a few months ago, and think they came out really good (thank God - because they were on high beams for the first few weeks after the surgery).
Bren, I did check out Vinnie's site, but I'm kind of anxious to be done with this and so far my PS has been great. So we'll see - worst case scenario, I could always get them adjusted by a tattoo artist later on, but again, I'm really just sick of the whole thing by now. Keep us poste don your path results - hoping for good news for you.
Ashla, Thanks for posting the article.
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MarisaC, I don't know which chemo your oncologist means when talking about "low dose", but possibly taxol x 12 (weekly). That's what I had. Although each treatment is low dose, the cumulative dose of taxol is more than what you would get in 4 treatments every 3 weeks (or every two weeks) at a higher dose. My oncologist explained that triple the weekly dose would be toxic, and he also told me that there are statistics backing up the efficacy of weekly taxol. For me, side effects were minimal.
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Shore1,
Don't know where in NJ you are but if you change your mind, there's a really good 3d tattoo lady in Westchester County.0 -
Shore I too felt if my PS didn't do a good job on the tattoos I would see a tattoo artist to fix them. I'm very pleased. Actually I think my nipple recon & tatts are the most successful part of my recon. They will lighten up a bit over the next few months. I hear you about this "average" size. As a designer I know when it comes to people there is no such thing as an average person. If you design for that you really have designed for no-one.
cypher when I first saw my onc I asked her "How do we know this will work?" She said we don't. She also said "40% of the women with my stats don't even need chemo/estrogen therapy. The problem is right now we don't know who those 40% are. If we did we wouldn't treat them. We do not like to over-treat." I was very pleased she was honest.
But of course there are 14% of the women with my stats that don't stay NED (in the first 10 years). We don't all make it and they don't know why. 2 of my friends that were treated around the same time as me with the same chemo cocktail recurred 2 years later. 1 wasn't HER2+, same stage, much smaller tumor but did have some nodes, 2 years younger. The other was HER2+, stage 3, negative ER/PR, same size tumor, also some nodes, 10 years younger. Both had rads. I did not. Someone has to fall into the 14%.
While it seems most of us do OK and beat this disease those that don't as well as those that are metastatic from the start is why this disease needs a cure. Also the fact that some of us are being over-treated but we have no way to tell needs to stop. I'll be honest. I do think I might fall into that category but not I don't want to gamble with my life at this point… I'll stay on the AI for 5 years but not sure yet about the 10. Will be discussing this with the onc not my NP when that happens.
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cypher - Ann is CoolBreeze from this site. Her mets showed up quickly after initial treatment, so they were likely there all along but not big enough to see, and she is unfortunately someone for whom Herceptin was not the magic bullet.
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Peggy Orenstein's provocative piece is this weekend's NY Times Magazine cover story. We've seen a few others along these lines recently. I and probably all of you have had many of her points bothering just below the surface as I made my way through this BC maze in various stages of weary, fearful, overwhelmed ,dazed and anxiety ridden purpose.
It's up to us to steer the money, the dialogue, the research away from pink to progress.0 -
ashla, my belated thanks for sharing Orenstein's commentary!
A.A.
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Lago, Specialk, thanks for your thoughtful comments. Yes I agree she must have had mets all along – that’s one thing that really terrifies me—every time I have any random symptom I worry that it could be mets and that they missed something. It does kind of seem like, to some degree, if you have mets then catching it as early as possible isn’t going to make that much difference in your ultimate prognosis. I could be wrong. I mean, camillegal is stage IV but she was diagnosed in 2007 and here it is 2013 and she’s doing ok – right Cami? I mean I realize all the treatment has done a number on you but still, we have the pleasure of your company on this thread. DEFINITELY agree that they should be focusing far more energy and money on understanding and treating metastasis than on getting 30 year old women to get mammos. Ashla, what are your thoughts for yourself vis a vis the dangers of mammograms? You had a lump rather than an MX, right?
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cypher Here comes my seatbelt speech. Sorry if you've heard it. I can't keep track of who I've told.
<steps up on soap box>Everyday you get into your car and go about your business. You don't think "gee I might get into a car accident today." What you do is take precautions like put on your seat belt and drive safely and cautiously. Breast cancer for you is the same now. You do what you can by keeping a healthy lifestyle and taking your Tamoxifen.
Time to worry about the car accident or mets is if it actually happens. Worrying about something that may never happen is not surviving… but give yourself time. It can take a few years to reprogram and not think about cancer all the time. Just remember if you have something that isn't right and it's been 1-2 weeks call your PCP. If it's been over a month, call your onc.
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Hi to all of you!
AlaskaAngel, I saw my MO on April 16, had many questions, one of them being if he could recommend a vaginal cream or some miracle pill
to alleviate vaginal dryness and pain during intercourse. He did not mention ospemifene, but he did talk about the fact that some women chose to use vaginal estrogen creams to help with the issue. He advised me not to use the cream as my estrogen and progesterone cell receptor status results = 100% for both hormones. I know that TonLee says she uses it (I think?), and she is aware of the caveats yet finds it helps. I am attaching a video created by a doctor who comments on the Winter, 2013, FDA approval of ospemifene. It has some possible similar SEs to tamoxifen, i.e., increased risk of blood clots and stroke, thickening of the endometrial lining, excessive sweating (hyperhidrosis). When you view the video, the doctor says it is not recommended that BC patients use it, but . . . since it is meant to alleviate vaginal dryness, I guess each of us has to decide the pros and cons of using versus not using it. Here is the video link:http://www.medscape.com/viewarticle/780811
Also, I am attaching a Reuters article from the company who manufactures and tested the drug. Some useful info., is in the article: http://www.reuters.com/article/2013/02/26/nj-shionogi-fda-idUSnPnNY65848+160+PRN20130226
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Cypher, i'm older than you but my questions re mammos right now are not regarding the dangers But the limitations of mammos. Too many false positives and even worse...misses. Most of the survivors I know found their cancer on their own and many had been missed on recent mammos.
I still have very dense breasts and just had a birads 3 mammo . Means likely not cancer but needs a 6 month followup...which I would have anyway.
My MO and RO feel it is likely the result of post rads tissue change and my BS is not worried. My MO told me this is likely to happen to me again because of dense breasts.
Of course when something like that happens I question my decision to have a
lumpectomy but I realize that MX would only have been a psychological boost. It would
have done nothing to improve my particular survival odds.
I'm going to have tomosynthesis ..3D ..mammo in the fall.0 -
AA....
No thx necessary. Very important dialogue imho. Let's see where it leads.
You could rightly say..." I told ya so" on much of it .0 -
Hi gratitude, thanks very much for both links.
I had actively sought to be a participant in one of the ospemifene clinical trials, but breast cancer patients were not eligible for it. Because of the difficulty in obtaining drug approval for most drugs, the primary goal with ospemifene was to help as many women with VVA as possible, so they naturally opted to forego including breast cancer patients in order to get approval.
What we want is FACTS for us as breast cancer patients. Which is what we continue not to be able to get, due to the need to prove objectively whether a substance or treatment is helpful, not helpful, or risky on live humans without being able to use live humans who have bc.
At the same time.... some drugs, such as conjugated estrogen with progestin, had to be kept on the market until they demonstrated significant adverse effects. Go figure.
At the same time, some drugs, such as tamoxifen, bind to estrogen receptors, and thus (like the description of ospemifene) cause antiestrogenic effects in some tissues of the body while at the same time cause estrogenic effects in other tissues of the body. The mystery that remains is whether or not this drug (ospemifene) acts on the same tissues with the same effects as tamoxifen.
What a golden opportunity for breast cancer patients, if in fact it does. Opportunity, missed.
It is noticeable that new vocabulary has been used in place of the term "SERM". When did science stop using Selective Estrogen Receptor Modulator and substitute the exact same concept with different terminology?
As bc patients we each approach treatment differently. For better or worse, I was and am far more chemophobic than cancerphobic.
At one time, metastatic bc was treated with testosterone in some trials. Later it was put in the "we don't know" pile, at least in terms of adjuvant use. To me there is logic in understanding that "we don't know" does not equate to "it is dangerous". To others, anything that is uncertain is forbidden. I chose to participate in the trial for the use of low-dose testosterone for breast cancer patients almost a decade ago, which provided some additional knowledge to consider about the use of testosterone for bc patients.
Yet the same measure of danger is not openly expressed about the genuine uncertainties of approved drugs and radiation that are used for treatment of cancer.
When considering whether or not to do chemotherapy using CAF, I had to come to acceptance that any medicine that is considered carcinogenic can cause cancer. That is why lab techs and nurses and doctors have to go to great lengths not to be exposed to it when they are working with it. That is why rads techs and rads docs are given a thing they pin on themselves that measures the amount of rads they receive in the performance of their jobs. It does not do squat to clear up the mystery as to why patients do not wear any such evaluative gear to provide us with a running count of our rads exposure to help US consider the risks in any such "factual" way as time goes by and we undergo more and more rads. Are we (and our care providers) so incapable of comprehending that every exposure to rads is carcinogenic and adds some increment of risk for recurrence due to the testing?
Yes, the info provided for ospemifene is correct, the manufacturer has not fully studied the risk to cancer patients like ourselves, which literally interpreted means they cannot confirm that it is dangerous to us or that it is not. (Unlike chemotherapies or rads that are known to pose some danger to us and which are commonly prescribed to us without being assigned a numerically defined risk.)
We can't get to where we have facts available for early stage HER2 positive bc as to whether the known risky drugs (chemotherapies) are needed along with the HER2 positive drug of choice in order to avoid subjecting many bc patients to the risky drugs.
I took the big risk when I did CAFx6 and when I did tamoxifen as a HER2 positive patient with an unknown AIB1 level at my MO's direction, even though oncs were aware that those HER2 positives with a high AIB1 level had worse outcomes (although my MO never discussed THAT with me).
So I don'[t assign ospemifene as high a risk level as I do most other drugs given commonly to bc patients.
A.A.
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I too was one of those with very dense breast tissue… and my tumor had to get 6.5cm (in a small breast) and nipple discharging blood before they saw something (with the US)! This was after a scare 4 years prior. Had this be caught 1-2 years after my first scar it might not have been invasive (since 1cm of my tumor was DCIS).
Mammos were the best/least expensive tool we had. Hopefully better imaging will be in the future.
And this article roughly talks about stats. I'm not sure what the stats mean. I do feel early detection is important. But at the same time more needs to be done for metastatic disease but not at the expense of abandoning early detection.
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Hello Everyone. I am newly diagnosed, and the last couple of weeks have been a crazy whirlwind rollercoaster. There is so much to learn, so many decisions to make. I've been reading a little on these boards and amazed at all of your knowledge.
I will tell you my story, and ask some questions, thank you in advance for reading.
I had a routine mammogram which showed a spot. I had it biopsied, turns out there were 2 tumors, they only biopsied one. It came back invasive ductal carcinoma - undifferentiated - multi-focal. I was sent to a surgeon, who sent me for an MRI - it showed a spot on my liver, a spot in my armpit, and a 3rd tumor. (I had 2 fibroadenomas removed from the other breast in 1978 and 1998) So, scared, thinking it is metastatic and already in my liver - sent for an ultrasound - had 3 biopsies, 2 in breast, 1 in armpit. Liver spot was also in CT scan taken for an ovarian cyst in 2006 - they say it is a cyst and nothing to worry about. whew. they said the preliminary report on the node in the armpit is negative - it was a reaction to the first biopsy, probably. another whew. I have not heard the final path reports - most likely scenario is that the 2 tumors close together are cancer, and the 3rd one didn't look the same to the radiologist, more likely a fibroadenoma.
I saw the oncologist on Friday. He said that the first biopsy results came back being 100% positive for estrogen, 16% positive for progestin, and I forget, but something like 20% positive for HER2/neu. He said it is treatable, curable, it is stage 1, less than 2 cm. He wants to put me on chemo after surgery - I think he said Taxotere, Carboplatin and Herceptin, but I'm not sure. I should take notes at these appointments.
According to the surgeon - and it may change depending on if that 3rd lump in a different quadrant is cancer or not - that I could have a lumpectomy (he also recommends a plastic surgeon to reconstruct the breast - I have big ones, 46G bra, and he could make it more normal looking) - and that the lumpectomy would be followed by radiation. My alternative would be a mastectomy, and then I wouldn't need the radiation.
I see the surgeon and oncologist again monday and the radiologist on wednesday.
If you have gotten this far, thank you.
Now, my dilemmas.....
I've been reading a lot - a real lot - (and I've been reading about alternative medicine for years) and chemo and radiation scare the heck out of me. Not the specific anti-estrogen or herceptin as much as the cisplatin or carboplatin - mustard gas? Do I want to poison my self? Long term - do I want to destroy my immune system when I need it now more then ever?
Also the radiation - I read an article where it said that yes, radiation after lumpectomy will reduce recurrence, but can also damage the heart, and while you may not die of caner, you may die of heart disease.
I have been already instituting many alternative protocols - the budwig diet - Cellect, a nutrition product - essiac herb tea - wheatgrass and vegetable juices - (celery and parsley have anti-tumor properties) - and taking all kinds of supplements including pancreatic enzymes and turmeric. So, I'm doing all these things that are health promoting - and these doctors are promoting all these things that are dangerous, could have long term side effects (like leukemia) and don't promote health....
Well, I've gone on and on.
Fear of mastectomy - not the loss of the breast as much as the fear of pain and disability, at least short term. Fear of radiation (I've read that for every mammogram you've had, you increase your risk of getting breast cancer by 2% - well, since I had my first lump in 1978, I have had annual mammograms, as recommended, and since I have dense fibrocystic breasts, have often been called back for more pictures - so, I've probably had 50 mammograms, which means according to that statistic, I have 100% chance of getting cancer.... and I need to have more radiation....
can you tell I'm spinning my wheels here trying to figure all this out.....
If anyone has any words of wisdom to share, I sure could use them.
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Welcome flaviarose,
Lots of great advice and wisdom coming your way here . I'm going out but on just one of your questions. I think I can enlighten you quickly....Rads... I had face down tomotherapy on my left breast and although they don't guarantee your heart and lungs are all clear, it will be much less cardio toxic. I saw the pics and it doesn't seem likely they got hit.0 -
flaviarose,
Introduction to Breast Cancer 101 is miserable, because so much of it still is generalized and not specific to each of us as individuals. The right solution for anyone in particular isn't certain.
Some people feel most comfortable researching and questioning specialists and then trying to make as much sense out of it for themselves as they can, and others feel most comfortable relying more heavily on the guidance of specialists for recommendations. It can drive anyone crazy trying to know for "sure" because no one yet knows what will work for any of us for certain. What could help to slow down or stop cancer for one person could do just the opposite for someone else -- or even not do much of anything one way or the other for that particular person.
I didn't have confidence in my treatment and I still question it years later. But here I am, 11 years out, without recurrence. And no one knows why, since I never had any trastuzumab, or taxane, or aromatase inhibitor to add to the chemotherapy and 1 3/4 years of tamoxifen. Maybe it was pure chance.
A.A.
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flaviarose - I'm very sorry about your diagnosis. This is a confusing time and there's so much to comprehend/process.
I, too, was worried about chemotherapy and radiation (as I think many of us are when we embark on this long road) and my concern about those two treatments comprised a good portion of my early posts on this thread.
So now, six months later, I've had a double mastectomy (right side was prophylactic), six chemotherapy treatments of Taxotere, Carboplatin and Herceptin and at some point in the not-too-distant future I will be starting radiation.
Her2/neu breast cancer is nothing to fool around with. That's what I've learned throughout all this. Actually, cancer in general is serious - regardless of whether or not a tumor has Her2/neu receptors.
I was definitely one of those who went into this (kind of) kicking and screaming about chemotherapy and radiation but a friend of mine, who is a triple positive and who I met through BCO.org, put it to me this way one day:
When she was first diagnosed she met three other women online who had the same triple positive diagnosis. The four of them were diagnosed at about the same time.
Two of them decided to take the all-natural route.
Two of them took the traditional medicine route, i.e. chemotherapy, radiation, etc.
The next thing she said was pretty sobering and it was this:
Two of the women are still alive.
Two of them are not.
Obviously, my friend is still alive.
The two who went the traditional medicine (chemotherapy and radiation) route are still alive. The two who took the natural route are no longer with us (to use her words).
After hearing that, I've never looked back.
Editing to add - I relay the above based on what it finally took for me to quit worrying about the path I had taken versus the other path. Of course, your mileage and everyone else's may vary.
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Thank you! I will ask the radiologist if that is an option. Did you have it done in a big city, or cancer center?
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Thank you, and good for you for staying healthy!
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Wow - very sobering indeed. I'm so glad I asked these questions, I knew I would get good advice :-)
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flaviarose we all hear you. We were all in your shoes. The beginning is so scary. I too was most afraid of pain and never feeling the same. But one thing I have learned, even though it's hard is not to be scared of the unknown. Also remember that everyone's journey is different. I will answer your questions bases on my experiences.
Mastectomy (single is MX double is BMX) sounds painful as hell. Well I found out I have a very high tolerance for pain. I never took any narcotics, never used the pain pump I didn't even take 1 Tylenol after surgery! I was sore but not in pain. But they do give you narcotics to be sure you are not in pain and will not let you go home till that pain is managed. Seems most women say it wasn't near as bad as they thought. 2 weeks later I was on the bus going to freelance for my last employer. You really do feel better every days.
Radiation & heart damage. Be careful of "Dr. Google" Some of the information is old. Yes you might have a risk of heart damage depending on where your tumor is located but these days they are much better at targeting what they need to target. This is a good question to ask your team (radiation onc). But there are lots of unknowns till they get in there and you have surgery. BTW I had dense fibrocystic breasts and had my first mammogram at age 41 or 42. I skipped only one. Diagnosed at 49. My BS (breast surgeon) believe my tumor started at age 44. At that point it would have been only 3 mammos at the most. Radiation did not cause my breast cancer. I have never heard that statistic of increasing your risk by 2%. You should check to see if your source is reliable. There is a lot of bullshit and twisted information out there.
Mastectomy vs Lumpectomy. This is a very personal decision. I didn't have that choice because my tumor was so large and my breast was very small. Once they spotted stuff in the other breast they recommended that I get them both removed.
alternative protocols while there might be some alternatives that might work to date none have been proven in reliable trials. Also there are a lot of quackery out there. It's really hard to separate the good from the bad. HER2+ is a very aggressive cancer. You might want to consider complimentary treatment but I would be very careful about alternatives. I know many sound so convincing but as you continue to become informed you will find some of them are twisting the information.
Even Steve Jobs started with complimentary then realize it wasn't the right path. Who knows, maybe if he started with more traditional he might still be here today. Right now it sounds like you are early stage. This is the time to get that cure. Once the cancer has metastasized no alternative or traditional protocol will cure you. At that point you are keeping the cancer at bay and at best getting it to go into remission but rarely does that remission last when you have metastasized.
As far as not destroying your immune system. Well your immune system didn't stop this cancer from happening so it's time to try something different. You will read about so many women here who were leading very healthy lives, exercised, no smoking, hardly ever drank etc. and still got breast cancer. IMO I felt I needed a strong gun to kill this crap. Treatment doesn't destroy your immune system permanently. Yes while your being treated your immune system won't be as strong but it is not destroyed. I am older and now post menopause but my immune system is just like it was before. I get maybe one cold a year just like before.
Spot on Liver I had that too. Actually 3 spots from the initial scan. They thought they were cysts but my onc wanted to continue to scan. Once after chemo. Then a year after chemo. Then 6 months after the last scan. Finally after 2 years of scanning, one of the cysts disappearing and the other two remaining stable she now believes they are cysts.
Final path At this point you really won't know till you get the path from your surgery. One thing I would recommend is if you decide to do a lumpectomy also talk to your doctor about the "what if I need a mastectomy." What I mean is if s/he finds a lot more tumors that would require a mastectomy rather than a lumpectomy give your surgeon permission to do that. You don't want your surgeon to have to close you up then bring you back under in a few days to do the MX. I know it sounds crazy but it happened to my neighbor. The other bigger tumor was hiding behind the other tumor. They just didn't see it in the MRI or Mammo.
Feel free too PM (personal message) me if you have questions you don't want to post.
… and like I said be careful of Dr. Google!
♥
I was also on 6 rounds of Taxotere & Carboplatin. 1 year of herceptin. BMX. Anastrozole (anti estrogen). I didn't get radiation though. I was in a gray area. for tumors over 5cm they usually do radiation but in my case my tumor was on the left side in the posterior region (closer to the chest wall) right above my heart. I'm also a small frame. My Rad onc didn't feel the risk was worth the reward in my case.
This August 31 will be 3 years since my surgery!
This is the longest post I've ever written!
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Lago, I’ve seen it, but it’s good to be reminded of it. Every time I have a random symptom I start worrying about it, and otherwise I don’t think about it much. But I have a lot of random symptoms (which are probably just that….)
Ashla, I feel the same way about the lump. I’m not scared that I have a greater risk of anything from having the lump v. an mx, but I am nervous that, if there is something, they won’t be able to find it. It is interesting about women finding it themselves…. I have a friend who was diagnosed with a mammo, but she was stage I, er/pr+ and her2-, low oncotype score, so it was just a lump + rads + tamox for her. “just.” But who knows, maybe she is one of those who didn’t really need to get diagnosed at all….
I’ll be interested to hear about how your 3D mammo goes.
Alaska, very interesting points, as usual. I wish there were a test available for AIB1 levels. It seems dumb that there aren’t tests for it.
Lago, I think that article was saying that early detection doesn’t make that much of a difference in overall death rates. That seems very counterintuitive to me…. I don’t’ understand it, because they say that if you are stage I, your odds are x, stage II, your odds are a little lower, etc., so that seems to me to mean that if they catch it at stage I your odds of surviving are higher. I’m confused!
Flavia, a question for you – is the cancer on the right or left side? My understanding is that there is greater danger from rads if the cancer is on the left side b/c then some of the radiation gets to your heart. Mine was on the right side. Also, I’m wondering where the tumors were – toward the surface or toward your chest wall? I do wonder whether being large breasted means you have more radiation than someone small breasted. (I’m a DD.) … But I guess Ashla says otherwise?
Lee, WOW, that’s an interesting story. Flavia, I will also tell you that I know someone who had a small (less than .5 cm) her2+ tumor. She had a lump + rads and an aromatase inhibitor, but no chemo or herceptin. It has now metastacized to her liver and she is stage IV. My feeling is, though there is a lot of toxicity to this stuff, if you are really into natural remedies and so forth – you can use that stuff to support your system, and you can use it when you’re done with treatment, and all that stuff may help reduce your chances of a recurrence. It will very likely help your body recover from the toxicity of the western medical treatments. I’m more scared of cancer than I am the cancer treatments, perhaps because, if you are her2+ and it comes back, you are looking at it coming back in 3 years (most likely). If this other stuff causes a secondary cancer from the toxicity, I think that is probably a lot farther out time wise. And less likely.
These are all good questions for you to ask and we are all here to help each other. Sorry you have to be here but I hope we can help you feel more at peace with having poison administered intravenously…. It’s scary stuff! It took me awhile to come to peace with it but I don’t regret doing chemo.
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Touche' Lago!
Welcome Flaviarose. We all questioned the need for all the crap treatments but I've never looked back and I too had Taxotere, Carboplatin and Herceptin. It really is all doable....sounds so horrible and so terribly frightening in the beginning but it really does get easier and there really is a light at the end of the tunnel. Everyone here is so great and supportive...you've found a 'family' here to vent with and go through the whole process. I'm not one of those with all the knowledge but there are plenty here who are and they will provide lots of supporting data too.
Arlene
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