Why Im Not Doing Chemo
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Jazz, my onc told me last week that Tamoxifen was originally prescribed/made as a contraceptive...but was hopeless!! eventually it was found to help with BC.
Eve: There's a 20mg and a 40mg tablet from what i have noticed, but i have never heard of someone on the 40mg.
At stage IV, they mostly believe that the cancer has already spread, and alot of us keep our breasts. Treatment is only to halt progression. I asked the oncs if i could use my breasts as a kind of gauge, they said i could, he checks them regularly..and we were both intrigued by the fact that at least one of the 2 is no where to be found. Extremely unlikely to be permanent, but i just wanted to share that with you. I was also told to check them regularly for growth re ulceration, and as tumours sometimes work their way to the surface of the breast/break through and ulcerate, they believe ic an stay one step ahead of that with self exam. It kind of gives me the 'willies' having to do that, feeling your cancer is confronting, but i do it. If ulceration was to occur, they would remove the breast. Some stage IV women can talk their oncs into mastectomy/lumpectomy...there is some evidence that it can be beneficial, and ease tumour load at least. But, alot of oncs choose to advise to leave them there.
I think you are right in that removal of the breast/lumpectomy in early stage, has the most beneficial outcome statistically, but im not as well read on early stage BC. Im sorry you have to have the surgery, ;(
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Eve: what's your onc's thinking behind a month of Tamoxifen only? im interested.
p.s. Not everyone gets side effects...and some only minor
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Eve..I elaborated further and edited my response to your question posted on the Mucinous Breast Cancer thread....
I just want to chime in once again....Dr. Groopman's book Your Medical Mind discusses how people make their medical treatment decisions. While I didn't think it was a great book, I did find the topic most important and provocative. This thread illustrates the example of how people find their way to treatment.
I would just like to explain MY "Medical Mind." I'm like many of you, I research EVERYTHING. The DH was diagnosed with a rare "orphan" illness almost two decades ago after struggling for 20 years before that! With an orphan illness, it's not like there's much in the way of treatment. And, how should I say this...hmmm...when it comes to treatment...well, you're kind of a guniea pig.
I also learned to understand statistical detail and risks and benefits of treatments. Beesie, I want to add that I am also cognizant of quality of life...even though the data might not include THAT....
What I also learned is well illustrated by what Eve has done. She's spent considerable time finding a physician to collaborate with. Dr. Groopman explains this process as well. I think there should be more sociological studies done on how patients actually choose their physicians, because there is so little research on that topic and I think it is an important issue that needs examination. Why does one person use a particular doctor that another might think is a quack...Hmmm....
Dr. Groopman goes into signifiant detail about all of these issues which I think are paramount to finding the best possible care. And what he argues in the book is that what might be the "best" treatment for one person, may not be the "best" treatment for another. He begins his book with an eloquent discussion about why this woman continues to refuse taking a statin.
So...exactly what is my medical mind? Well, I do my research and pick my doctors, or as in my husband's situation, where there are so few "experts" in his orphan illness, we arrive at the doctors chosen for him...and then we usually agree to whatever the doctors ask us to do. When I was scouting out breast surgeons, I did my homework, arrived at the doctors office and after meeting the doctor, never felt the need to get a second opinion. I would have done whatever it was that he thought I should do. Point blank he said to me, "You don't need a mastectomy." And I replied, "Okay." Done. I didn't think we needed to discuss survival statistics or anything else. He thought a lumpectomy in my case would be "easy" and it was. He got good margins and you could never tell by looking at my breast that I had a lumpectomy....
When it came time to visit a medical oncologist, again, I did my homework and arrived at a single oncologist's office and he's been my doctor ever since. I did get second and third opinions about treatment options, since my niece is a medical oncologist and my internist insisted that his friend, also an oncologist, look over my protocol. Seemed like everyone was on the same page.....
Although I have to say, I am one lucky camper, I am not the happiest camper. Why? Because I NEVER had to take ANYTHING other than an occasional aspirin in my life! And now I'm putting all this stuff in my body!!!!!!!! I also hate being a patient! Yikes! And, while my medical oncologist and I agreed I would try EVERYTHING and "see how it goes," I am pissed because EVERYTHING IS GOING WELL and I have no excuse for stopping anything! While I will admit I am a bit stiff from the Lupron injections that have shut things down in my body...other than that I feel fine. All of my doctors have told me they wished all of their patients were like me. Ha! I have great quality of life. And my mammograms and sonograms are now easier to read because I am producing fewer cysts and my breasts are now less dense. They're also not sagging, but still perky. To keep the stiffness at bay I walk a lot and have lots of energy. Most folks haven't a clue that I am being treated for breast cancer.
So dear Eve and fellow sisters...While I research EVERYTHING, at the end of the day, once I have confidence with the medical team I've chosen, my medical mind tells me to do whatever I am told to do with the understanding if I have side effects, I can always reassess what I'm doing. Could something crop up many years down the road? Sure. But as I have learned with the DH's illness, sometimes it's not worth thinking beyond today. I always say, "If we wake up vertical, then it's a good day." My medical mind also tells me that surrendering to my medical team is for me actually empowering. I let THEM worry about my health so I can go about living. That's how I stay sane.
Wishing you well, Eve, with your upcoming surgery!
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eve: Am I confused....I thought you were trying to get permission to take Herceptin without the chemo? This would be for the HER2+ which as I understand is a more aggressive bc.
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that's life- so it means that it is a hormone but apparently not used in anything at this point except BC. It is not a chemotherapy? The sites I found it on placed it under the Chemo pages. I wonder if it's because it requires infusion? The amount they use? How do Hormone Therapies differ from Chemotherapies? Do they call all treatments listed for Breast Cancer Chemo? Is it an umbrella term? I mean Chemotherapy? Oh and Hi Girl, and just how are you hanging in there. Are you feeling well this week? I'm hoping so. God Bless and Big Hugs.
Added:I had to check on what Chemotherapy means and yes it is an umbrella term for any treatments given for BC through the oncologist care. It's not a certain medication type. Cancer is an umbrella term for all types of tumors or invasive cells. Huh? Oncology is the Study of Cancer. What a break down. I'm guessing the heavier the medication they treat with, became the "I'm having chemo" as a slang way of saying mine treatment is worse than your treatment.
Well I'm a learning things this week. Much love to you.
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jazz3000 - 1) Chemotherapy drugs are designed to kill the cancer cells, common ones are Adriamycin, the taxanes (Taxol, Taxotere, Abraxane) Carboplatin, Cytoxin, Fluorouracil, Gemzar, Methotrexate, and others. These are typically by infusion. 2)There are targeted therapies like Herceptin and Tykerb for Her2 positive patients, and Avastin which is an anti-angiogenesis drug. These drugs are usually given concurrently with chemotherapy, but are not considered chemotherapy. They don't kill the cells per se, they work by either blocking or preventing. 3) Hormonal therapy drugs are Tamixofen which is usually given to pre-menopausal women which blocks estrogen but does not suppress it, and the aromatase inhibitors (Arimidex, Aromasin and Femara) which suppress estrogen production and are given to post-menopausal women. Hope this helps.
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Special K - God Bless! Thank you for the definitives. I can't read fast enough to break it all down this way. I've actually copied it and pasted to my notebook. Well worth reading several times before understanding it all. (You have got to be in the health field. I can't pronounce one third of the medications you've named.) BIG HUG.
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jazz3000 - I am so glad that was helpful to you! It is a lot to take in, right? You are correct, I am in the health field - Transfusion Services - but also FIL, BIL both physicians, other BIL is a veterinarian, MIL and 2 SIL's are nurses. We all tend to converse in medical-speak!
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evebarry ... if you want to lower your estrogen ... first ... have you had your estradiol and estrone tested? Do you know what they are? How low do you want them? I have lowered my estradiol to less than 5 and keep my estrone well below the threshhold of 100 ... 30s and 40s....I actually supplement with the "good" estrogen estriol because my skin was drying up from lack of estrogen...plus our heart and other things need some. I take calcium D- glucarate (the calcium in this is incidental, its the D-glucarate you're going for. I also take 4 capsules of Bio Response DIM and 1 Life Extension Triple Action Cruciferous Veg Extract and a bazillion other pills per day including Quercetin and others for lowering estrogen. I do my best to avoid parabens and foods and drinks infused with estrogens and all Monsanto Frankenfoods. The list goes on and on. But, the point is ... many docs prescribe hormone lowering protocols without even knowing what your hormones are. How will they know if the drug is working? My ex-onco was like that. Doesn't test hormones or Vit D3 ... said only test for things that pertain to cancer ? My ex-onco says Tamox works for everyone. If someone is missing the 2 alleles on the CYP2D6 gene needed for Tamox ... they would be getting the side effects for no benefit. I only have one of the alleles. My ex-onco refused to order the CYP2D6 blood test...had to get another doc to order it. My ex-onco also fought me for 2 months about having the OncotypeDx test which showed that the chemo she was pushing would have added no benefit for me based on the 21 gene test.
With every good wish for you in this difficult decision making process.
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Great info for eve there luna. You know, i asked my onc for a hormone level test, and he answered 'No need, as tamoxifen doesnt affect hormone levels'..you have just made me realise he side tracked me...lol..as we went on conversing about the history of tamoxifen....hmm. It's true you have to stay focused, and push through with what you want when visiting your Onc.
Jazz...im going along ok. thanks
yes,an umbrella term, that's the term i was looking for ...lol. Tamoxifen is taken as a tablet, once a day. No infusion. Side effects are like going through menopause. ...you will likely become quite fluent in medical speak if you hang around here!! 
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Special K- Yes, you were, and more than you realize. I see you will never need worry about you, your family, or your dog or cats health issues. I would say, you were well covered. LOL. Yes it is much to take in, and very difficult when certain studies or research with chemos, require a time limit for issuance. I spoke with my new Onc this afternoon and she shared the studies HMO's do come with a price. Requirements are that the patient recieve certain chemos within the time constraints given by the Drug Companies Researchers. In asking about all women receiving chemo, when 40 percent would never see a recurrence, she said it was true. They, the HMOs, recommend it to the 100, like cases, because the 40 out of 100 could not be identified as the non-recurrers (? don't know if there's really a word like that but it works,LOL).. I did find myself questioning the ethics behind the issue, as chemo can lower the immune system and actually cause cancer even to that 40. She was very nervous with my persistance in this direction, but I liked her because she responded honestly and as openly as she could. She was uncomfortable in acknowledging the medical side is as responsible for certain cancers as is environment and our human weaknesses. Such a catch 22. Most folks in the medical profession took an oath to do no harm and fully intended to keep that oath.. What an awful predictament to find oneself in. How do we all justify that? Who'd uh thunk the right and the wrong of it would be a factor in my decisions. A quesiton of ethics on many sides. I felt comfortable enough to agree to speak with her team next week. A very compassionate and kind group. I think I really need to ponder and sleep on all of this.
thats life- Focused! did you say focused? Duh???? LOL Uh what were we talking about? LOL I did want to share I've been through menopause and it's not fun. It was actually the hormone treatments at the time that caused the cancer of my uterus. Now I've swung the pendulum to the other side and I can't take hormones at all.As for speaking medically, I have to tell the pharmacist when asked what meds I'm picking up that I don't speak Latin. Who sits around thinking up these 85 letter words to put on prescription bottles? LOL
Anyway I am glad your doing okay. Hoping your Christmas is coming together as well. Thanks for being you. Hugs and warm feelings. Your on my prayer list here. Hope that doesn't offend.
evebarry - We might be able to hold our own in a year or so. LOL Yesterday I couldn't spell masectomy, today I are one. Hugs and hoping you've had some good times this week.
Kaara- Hoping all is well. I am trying to embroider Simba on the back of my youngest brat's jacket. The machine is fascinating just to watch. Christmas is coming. Hugs to you and keep on keepin on.
Now, may I ask you or anyone with the information about the success around Vit C Therapy. Is it proving to be successful at all?
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I' been working at a art exhibit all day. I'm tired, but want to catch up on the conversation here. I love you ladies. You inspire me. Luna, I'll have to re-read your thread on hormones and process what you said so I can understand it a little more and then bring it up to the my MO. Tomorrow...my mind is too tired right now.
I'm learning that I need to understand more about hormone suppressers before popping them in my mouth.
VR...I agree about finding the right team, one that you can feel comfortable with. But, I don't think after a few bad experiences with doctors, I can again blindly trust a doctor with my life. They can give you the treatment, perhaps the same as they did for the person who came in moments before you. It's sorta where you land on the chart or graph. Once they ordered the treatments they get to go home and live a normal life...where, the drugs you take or treatment change your life...and sometimes for the worse. I don't think I could totally trust my life into anyone's hands...except for God.
Beesie, good illustration with the aspirn...but I'm too cautious about taking an aspirn, tylenol and other simple drugs, even tums
Life experiences has done a real trip on me Just a few years ago I had no problem taking whatever drugs...After taking 2 round of antibiotics I had a oral mouth problem that I'm still fighting. Now...I have to check meds out and say to myself, is it worth the side effects because for whatever reason, if it is going to happen to anyone it's bound to happen to me...because it has. Guess, I've learned since cancer dx that I'm not indestructible...rather vulnerable. With that said, I've taken anti-fungal meds this year that are toxic to the liver. They helped, but it is not something I would do often. Sometimes you've got to take risks...just depends what it is and if you can live with the side effects. Again...it's only a choice you can make.
Also Beesie...I agree, even though I'm high risk, I'm not sure tamoxifen is the best way to manage cancer or recurrence ... at least not for me. It might keep me from getting a cancer, but what if I die another way...a stroke? another cancer? bone loss? After menapause you are at high risk for these three. Which risk is worse? Which risk factors can I live with? Can I live with a broken hip? Is there other less harsh treatments elsewhere? The bone density test 2 yrs ago showed there's already othoporosis in my lower back. Would tamoxifen put me in a wheel chair? Would it age me faster?
Even with hercepin there is risk to the heart and lungs. This too is a hard choice...I'm not sure I could do 3 harsh drugs at the same time especially for someone who is now in her sixties. My doctor says I'm in great physical shape...but am I since I'm dx with cancer 4 times?
Tomorrow I have a pet scan. I never had one before. Because you're not allowed to eat fruit, juice or anything but protein...I've only eaten a little chicken today. I can't wait until the test is over. Not sure what to expect, how long, and etc. My Christmas gift this year is going to be clear scans.
2007, 2008 dx dcis highgrade, Jan 2011, mucinious stage 1, Sept 2011, IDC high grade her2+ (3+)er + pr+
Diagnosis: 10/4/2011, IDC, Grade 3, ER+/PR+, HER2+0 -
Eve, a quick comment — tamoxifen is protective of the bones and does not contribute to osteoporosis. My bone density, especially in the spine, increased significantly while I was taking tamoxifen.
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eve: Wishing you a positive outcome on your scans! Sending you prayers and healing energy.
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I am compelled and excited by something Claire in Seattle posted on a thread much like this one, debating chemo.
"MD Anderson has some interesting statistics for survival of regional breast cancer (lymph node involvement). 70 years ago, roughly one in six women treated there were alive in 5 years. Today, five in six women are. Strong stuff."
Something is clearly working, and I believe it's a combination of improved chemotherapies, hormonal treatments, more aggressive screening, and targeted miracle therapies like Herceptin.
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jazz3000: You are absolutely right about the predicament that the conventional medical community has. A doctor friend of mine told me that they are governed by AMA standards of treatment and cannot go outside those guidelines. My BS proved that to me when he showed me the book of "guidellines" at my first visit. This simply tells me that I had better do my own research about treatment options and not blindly trust that my doctor will give me all the right answers. I selected my BS for his surgical ability alone....not for his advice about treatment post surgery. I have other options for getting that information, including oncos and integrative.
My first goal is to get through the surgery, get my final dx, and then proceed from there. I have listened patiently to everything my conventional doctors have had to say. My second opinions will come from the alternative side.
I appreciate all of the information that I have received on these threads that have helped me arrive at my decision. I wish I had been able to contribute more, but I'm so new to this game, that I can only be involved from an educational perspective at this point in time.
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Kaara, I did have my mastectomy. Late Sept and then the delay in chemo, due to another in mid October because of healing issues. I thought the delay was a blessing in the end, as the team was moving me through so quickly I couldn't process what was happening. I was given statistics that scared me into thinking the percentile within my BC grouping would die without their recommended treatments of chemo. Huh? There's that word DIE again. I'm not scared. LOL The medical profession knows the majority of us aren't going to catch up within their time restraints. The whole process of dx, to surgery, and off to chemo is about 8 weeks. The 3 month window gives them an added month for healing glitches.The question being under those guidelines if you decide against chemo within those limitations and the 3 month window ends what happens? The Onc told me I only had until the 16th of this month to decide. If I say no now, does that mean, if I change my mind in a month, discarding their guidelines, chemo is no longer an option? Just think I could DIE without it! Will the HMO lose money on me? My DS works for the city and cautioned me as he was given to understand an individual was recently told by the same HMO that if she refused to get to her scheduled mammogram they would cancel her membership for failing to complete their newest guidelines. If you fail to follow through on preventive medicine their HMO will no longer cover you. My DS was concerned as he was not sure if chemo was considered preventive medicine and didn't want me to lose my benefits especially in these circumstances. I asked the Onc yesterday if the legal side of things was such and she simply gave me a blank stare. Huh? What? I don't know. So I've been given 10 days to decide the good and the bad of all of this. You were wise in some respects for delaying the surgery. You've got some time to process and what a great blessing. I just wish you didn't have any cancer in you.
So far as being a newbie - I'm so glad you're here with the rest of us newbies. I don't feel so alone with all of this info and your perpective always helps me, and I know others like me. You get Big Hugs from me girl.
evebarry- Hoping you enjoyed your long day yesterday and you got plenty of rest last night. It does seem as I read all the info above you have a plate full today. I have enough trouble with the medical side. Whew!! Hugs and Luck in your day today.
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Got back from the pet scan about an hour ago. It's not as bad as the loud mri. I have the mri brain scan next week...thinking about cancelling it until the first of the year. ... too much going on right now...Christmas, and all.
Thatslife...so, bc women with advance cancers don't remove the breast? That is so interesting. If your breast tumors shrunk or disappear wouldn't the bone cancer also disappear or is it a different kind of cancer or harder to treat? I was a little concerned when you talked about end of stage cancer treatment. I don't want you going anywhere. I would miss you terribly. Next summer you and your daughter take a vacation out here in the great N.W. REALLY
Actually, we should have an alternative ladies retreat ... vacation. 0 -
lisa-e... The oncologist said one of the side effects of tamoxifen is bone loss. Lack of estrogen supposely causes bone loss.
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Kaara, in reponse to your question.
eve: Am I confused....I thought you were trying to get permission to take Hercepin without the chemo? This would be for the HER2+ which as I understand is a more aggressive bc.
Ah...The oncologist was hesitant giving me hercepin without at least trying tamoxifen for a month. I said no to 3 other possible treatments...felt it was a ok compromise...with the opting out of tamoxifen if side effects were bad. As explained by thatslife, tamoxifen isn't chemo.
If the pet scan I took today shows advance cancer or cancer in the nodes then I'm seriously considering the treatment impositive is now doing, or wornoutmom. If these don't work for me...then I would consider a targeted therapy that might include a low grade chemo. Hopefully, I don't have to go there.
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Eve... I am not suggesting that one put blind faith in the hands of their healthcare team. Likewise, I understand your hesitation. However, I firmly believe that once you do your homework, at some point you MUST believe in SOMEONE. My niece, the oncologist DOES think about her patients when she returns home to her young family at night. She told me, as a young mother, how profoundly she is affected by her young patients...
I choose to believe in the expertise of my providers AND I choose to believe inG-d as well. I am also very,VERY pragmatic. If I am not happy with my care, I leave no stone unturned in getting what I perceive to be better care. Thankfully, I have the luxury of tomorrow... Or at least I HOPE I have the luxury of many tomorrows!
Good luck!0 -
Where is my "like" button voraciousreader?
Good Post.
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jazz3000: That sounds scary! I would call my HMO and get exact details from them as to what their guidelines are, then you can make a more informed decision. Imagine taking chemo because you thought you would lose benefits without it only to find out later it wasn't necessary. I'm on Medicare but my supplemental is a preferred provider. I wanted that even though it costs more because I can choose my doctors and where I decide to go for treatment, provided it falls within the conventional "standard". This means if I decide to do alternative treatments, I am on my own, but I am prepared for that. Listen to this...my boyfriend's sister has lung cancer and is undergoing chemo. Her treatments are $50,000 each and she must pay 20% of that. I'll take the 20% thank you, and put it towards an alternative treatment of my own choosing!
eve: I'm seriously praying for you that you don't have any advanced cancer. Hopefully your surgery and your post treatment will take care of it. I would push for the Herceptin. I'm with you though...if additional treatment were necessary I would also opt for the low dose chemo rather than the full blast. We have done our research, and it makes sense, so if we're comfortable with our decision, we move ahead. We do it knowing there is a risk involved, but there is a risk involved with everything...there are no guarantees with this disease, unfortunately.
Sending lots of positive energy!
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thats-life: I have never yet had a doctor agree to check my hormone levels until I went to my bioidentical doctor. The most recent test showed that my estrogen and progestrone were still well in the low range, so I don't know why my tumor is HR/PR ++. Must be getting estrogen from somewhere else! Now I'm off of both and starting to have the same symptoms that sent me to the bioidentical guy in the first place...hot flashes...not sleeping...tired....irritable. Since I know I will probably never be able to take this medication again, I am just going to have to figure out how to cope, as everyone else does, and then they will ask me to take tamoxifen. Since I am post menopausal, and over 70, I am going to try and sidestep that issue.
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Kaara, yeah, I too am going to take the info thatlife shared on hormones to my oncologist...Feels weird saying MY oncologist. And so you understand, if ever or I do have advance cancer, I would first try alternative medicine before conventional medicine...try the less toxic route first. If it didn't shink or get rid of the cancer consider low dose chemo with the hercepin. The low dose chemo with hercepin was the third option my oncologist gave me. She said with it you wouldn't lose all your hair and side effects wouldn't be as severe, but you would take it more often and longer. Again, I'm going alternative first...try everything I can before deciding on that plan.
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Kaara,
If you are post menopausal it is unlikely that an onc would recommend Tamoxifen. Most ER+ women who are post menopausal take a class of drugs known as aromatase inhibitors. These include Arimidex , Aromasin and Femara.
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My husband took me out to lunch today. We do this at least once a week. After the pet scan, I felt a little off. I thought if I ate a good lunch that I would feel better. I ate a little hot soup, and a very large green salad. Since I barely ate yesterday due to preparing for the pet scan this morning, I thought I would make up for it by eating a large lunch. I looked down at the chicken, and potatoes and thought I was going to get sick. I only ate a few bites and begged to leave. After a few minutes of leaving the restuarant, I had to rush to the restroom. I lost everything. Afterwards, I felt like passing out. Right now, I feel too weak too stand up. Is this because of the radioactive stuff they pushed through my veins this morning. I still feel awful. So now, I am sitting in my favorite recliner, waiting to feel better so I can put up the Christmas tree, and also Hannauka decorations...We do both
If I am going to react to that think how much more chemo and even hercepin. I am so sensitive to drugs. I don't do well on them.
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Eve, your oncologist is wrong. Google 'bone' and 'tamoxifen' and you find support for the fact that tamoxifen protects bone density in post menopausal women. It does cause a decrease bone density in premenopausal women. If I remember correctly, you are post menopausal.
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lisa-e...I am post menapausal...but the other option is worse for me. And since I am er + 96, very high estrogen they suggested tamoxifen. All my doctors say my skin tone is excellent. For unch today they tried to make me pay full amount for lunch because they didn't believe I was a senior. Other than a little bone loss in the lower back, I'm ok...and that you can't see, just noted on the bone density test. I'll research what you said further...just know 2 different oncologist said the same thing.
I'm not sure if it's Kaara..who asked about if we are post menopause, where is our estrogen coming from. I ask my oncologist the same question. She said our adrenal glands make estrogen...also body fat. I don't have any body fat but I do live on adrenaline.
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Eve, the two oncologists you spoke to are probably not differentiating between pre and post menopausal women. I don't think many doctors do.
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