Chemo and Breast Cancer

wendy57

Like Ang7, my oncologist went over all the side effects and dangers (short-term and long-term) with me and my husband and he gave us written educational material on each chemo drug - which listed all the side effects, plus I had to sign a treatment consent for each drug I received (including Tamoxifen, Femara, and Aromasin) which included all the "adverse effects" that could possibly occur. 

AlaskaAngel

What made things difficult for me was that the only information I received from my onc in 2002 when I was treated was that

1) I would feel "a little bit sick" when I had treatment;

2) the statement that I would "probably go through menopause", but no information whatsoever about loss of libido or the impossibility of vaginal dryness as more and more time went by, despite all kinds of lubricants and foreplay and counseling; and

3) when I specifically asked about the possibility of any effects on the brain, the response was that "in [his] 30 years of treating patients he had only seen 5 patients who ended up completely disabled by it". For 30 years, he had administered the drugs without researching the possibility of what the drugs could do to the brain, and had reached the era where without doing that research, his specialty was moving chemotherapy treatment to become the standard for early stage bc as well as metastatic bc.

His intentions may have been good, but his actual lack of professional discipline by his failure to require that such research be done in full BEFORE introducing chemotherapy as standard practice for early stage breast cancer patients was not decent medical practice.

AlaskaAngel

Anonymous

"in [his] 30 years of treating patients he had only seen 5 patients who ended up completely disabled by it"

What was his definition of completely disabled?  Did he consider an inability to continue in a demanding chosen career disabled, or did he only consider someone completely disabled who was bedridden, or unable to complete the basic tasks of self care and daily living?

The other thing I would have been asking about is how many patients he had treated during those 30 years!!!!!  5 out of 300 is a very different percentage than 5 out of 3,000.  If he was treating more than 100 patients a year, how was he keeping track of all the long term side effects??????

Titan

I guess the only way to see if se's from chemo are from the people on here that have had chemo and can tell us...there are alot of us here...I'm almost 3 years out (2  1/2 from chemo)..and I can tell you that I don't have any se's from chemo...nothing at all....

Of course I don't know how I would feel if I didn't have chemo..but I feel perfectly fine now...

I'm 52 years old and I run 10-12 miles per week, eat ok..but not that great..like to drink my wine, work 40 hours per week...pretty much the same as b-4 I had breast cancer.

Would I do chemo again..you betcha..

Hindsfeet

Titan, I am so glad you did well with chemo. I hope five to ten years down the line you continue to do well. But, I tend to think those who are younger, early stage cancers with the her2- gene come out easier then those who are seniors (55 & UP). And those, who are earlier stage don't always have to take certain types of harder chemos or other drugs that cause side effects. . It is huge that you run 10=12 miles a week as that alone gives oxoygen needed to make you feel better through treatment. Another woman at 57 after several treatments lost bladder control, liver problems, in wheel chair and sick as a dog. She doesn't exercise the way you did, and ate horrible. Last Feb she got off chemo, now on alternative meds and is now doing great...stage IV cancer after several months off chemo is now in remissiion...a good friend.

We need to be careful not to give the illusion just because chemo went well for you that it's going to be ok for others. People taking chemo need to know what the drug is and the possible side effects. No surprises.

sweetbean

I have to say, (and I realize that I sound like a broken record), but we can do a lot to mitigate side effects through diet and supplementation.  I wish oncs recognized that fact because I think a lot of people would have a much easier time with treatment and it would reduce the number of people with long-term side effects dramatically. 

Anonymous

In the article I posted about the study. Brain Changes Seen In Breast-Cancer Survivors. It said that "it's not clear that chemotherapy is directly to blame (for chemo brain or chemo fog). More than half of the patients in both breast-cancer groups took tamoxifen, an estrogen-blocking drug that also has been linked to cognitive impairment, and most of the women in both groups also underwent radiation therapy. Either treatment could affect the brain."

There are studies under way to establish which patients are most likely to be chemo brain sufferers. Hopefully, the findings will help stop oncs from giving these one size fits all treatments that are helping some and crippling others.

Also, we can't forget that we always have to be our advocates. I learned (the hard way) NOT to base my decisions to take a drug solely on my doctor's sales pitch. Because of that horrible experience, I am chemophobic. I will never take a pharmaceutical drug again.

Most doctors do not research. They just repeat what the pharmaceutical sale reps tell them and follow protocol.  When you think about it, their job really isn't that complicated.  Plus, at the end of the day, their goal is to make sure they close the deal and get paid. Docs are not volunteers.  

As well, remember that oncs specialize in treating cancer NOT the person who has cancer.  So of course some oncs will sometimes use fear tactics or "forget" to mention certain SEs and/or downplay them. They are focused on their interests and objectives, not the patients'. The patients' QOL is really the last thing on their mind.   

The only way to make sure that you don't get burned in the process is to do your own research online before your appointments.  And, like sweetbean said, doctors are nutrionally illiterate. So it's up to each women to seriously take care of her body with diet, supplements, exercise etc to keep the side effects at bay.  For now, there are no other ways around it that I know of. 

Nancy, I've seen studies where something as simple as walking every day for long periods helps to reverse chemo brain.)

Anonymous

Nancy, you and I both. Had I known then what the devastating consequences would be, I would have passed on the "cocktail". Your onc and mine, cast in the same mould (

thats-life-

This article in The Oncologist addresses alot of the issues we have been discussing...it is very interesting! i posted it for you princess, on my alt thread, but thought you may not see it :

Concrete Options and Ideas for Increasing Value in Oncology Care: The View from One Trench

 http://theoncologist.alphamedpress.org/content/15/suppl_1/65.full

"In the U.S., medical oncology as a profession is wrestling with conflicting and often unrealistic clinical and financial expectations. Office-based practitioners face an environment of low reimbursement for cognitive care, high but declining reimbursement for chemotherapy and supportive care, and high income expectations of oncology professionals. As a field, there has been little incentive to assess or improve the quality of cancer care. Current incentives are often misaligned to reward doing the most aggressive and expensive actions, as long as patients are satisfied, because this leads to the highest return to the practice. Some consequences include U.S. cancer treatment costs that are twice that of any other nation with no or minimal differences in survival, late referrals (if at all) to hospice, and 14%-20% of patients receiving chemotherapy within 14 days of their death when it is highly likely to harm and cause complications. This pattern of care may lead to a significant risk for stress and burnout, as well as being economically unsustainable....."

Hindsfeet

I am seeing an oncologist this Friday. I'm learning from you ladies  I am going in with my eyes wide open. I' won't let her push anything on me, intiminate me or ask me to do anything I'm not comfortable with. If I can't do the herceptin without the chemo, I'll look elsewhere. I'm not even completely sure about the herceptin. Before anything is done, I want to make sure there is reason to take herceptin.

No matter what therapy we choose there are risk. There are risk that come with chemo, and other drugs. Since there are risk factors in cancer drugs it should be our decision as to what we do...not our doctors.

Anonymous

What really gets me Nancy is that he was so eager and enthusiastic when selling me the protocol and has now become Mr Impatient when having to deal with the damage done.



I have to admit that I envy those who just breeze through their treatments. Can't quite explain it ...it does appear to be a minority though.

Anonymous

ThatsLife, that article is brutal ! Is being a doctor no longer a vocation or am I just naive? Where did the good old days go ?



Evie, I'm sure you'll have that onc impressed in no time. Just hoping she's not too young with much to prove. I've learned to keep mine on his toes, lol

Anonymous

Nancy, I'm not going anywhere Did you ever actually read the pamphlet that came with the Neupogen ? I never bothered .... but could not believe my eyes !!!!

One thing is sure, never again !!! Hated having to shoot myself in the belly 10 x 6 and feeling like pure sh$$ the whole time, what a nightmare

thats-life-

Nancy: thats not how I read it ...LOL...I think there is financial benefit from prescribing certain chemos!

yes medici, it is brutal isnt it. But these are the things we have a right to: honesty and information

Anonymous

I agree 100% ThatsLife I am giggling thinking that this article was written for oncs eyes only and little do they know that cancer patients are becoming increasingly aware and will become a force to reckon with in a not too distant future. The establishment will have to realign and take into consideration patients' rights. On that note, I better turn off the lights, goodnight

sweetbean

Wow, Nancy, that is amazing that you never saw your onc again.  Ugh!  I get frustrated that my onc doesn't support my CAM treatments, but at least she is attentive.  I saw her before every chemo and I see her before every other Herceptin.  She is all over me and always asking about side effects, etc.  I see her on Thursday.

AlaskaAngel

Those of us who are more years out from treatment have had more time to "experience" the after-effects. Clearly, there are many more "newbies" posting on bc forums than old-timers, while they are in the midst of the experience and trying to sort it all out. And many of those posting are semi-menopausal and have not yet experienced the impacts.

I post the positive and the negative about my experiences.

I received my entire course of chemo through my PCP (based on my Seattle onc's recommendations for treatment) because I live in Alaska and don't live near a cancer center. I could have received it in my PCP's office but for insurance coverage reasons I received it in the ICU at our small hospital. I can't say whether my PCP would have made money from it or not but since the majority of cancer patients he sees are older and many are medicare, it wouldn't surprise me if he actually is losing money doing it. I sincerely believe he does it in order to try to accommodate patient requests to be treated where we live, and under close supervision. My onc only made money from me as a patient for seeing me prior to treatment and then upon completion of treatment, not from the chemo itself, although he works for a major cancer center.  Theoretically at least, his cancer center doesn't pay the oncs based on the chemo/cost prescribed but through the system of patient care mentioned by another poster in a previous post. I posted the news stories about oncs selling chemo because patients -- newbies and otherwise -- were so disbelieving that doctors actually can, and do, that kind of thing to patients -- and obviously, the lack of monitoring permits abuse of patients. The cancer center where I was treated once was abusive of cancer patients through an earlier failure on its part initially to adequately curb certain cancer trials, and my onc was one of the people who worked to end that practice at that cancer center. But it also has to be said that it should never have happened in the first place, and people were hurt by it across the nation in cancer treatment centers. Live and learn, yes -- but please, NOT so easily at our expense, or based on our trust in medical providers.

Where some of the focus needs to be is on the composition of the secretive "tumor board" each of our cases are reviewed by for recommendations for treatment. It is obvious that we need other specialty practitioners included on that board, and some are not cancer-specific specialties so we will need to focus on having a stronger emphasis on their training to include cancer-related analysis and treatment before they qualify for their specialty.  Primarily I am referring to endocrinologists. There is no way on earth I can respect the medical profession for failing to fully understand that the surgical and oncological treatment of cancer patients has huge impacts on the endocrine system and those impacts should be analyzed and treated specifically by endocrinologists, not oncologists and surgeons.

As with any medical treatment, there are many specialists involved. But that doesn't mean the "control" over the treatment should be so completely assigned to the specialty of oncology. I understand the need to have a team leader in charge of the team, but with all the specialties (surgery, radiology, pharmacy, etc.) deferring to the leader, no wonder there is not enough questioning of the direction of the omnipotent oncologists.

I respect my breast cancer surgeon's abilities. I specifically asked my surgeon why no endocrinologists are asked for their opinion as part of the tumor board process, before decisions are made about treatment that so definitely affects the entire endocrine system. He was completely baffled at my question, and had never thought of it himself. He told me that if they were included, the endocrinologists would be "totally bored".  I politely responded that perhaps if endocrinologists were allowed to do the talking, and the rest of the specialties were doing the listening, perhaps everyone would be less bored, as well as have a better understanding of the patient's options?  FOOD FOR REAL THOUGHT.

A.A.

AlaskaAngel

Nancy, I wonder if the results from this 2010 study might help? (I never had a taxane myself.) But I have taken melatonin over the years since treatment, mostly 1 mg and now 3 mg before bedtime.

http://www.ncbi.nlm.nih.gov/pubmed/20567633

A.A.

digger

AlaskaAngel,

I would imagine that the thousands upon thousands of other women who had chemo many years out don't feel the need to use this board because they're doing fine.  You understand this is a self-selected group here on BCO, right? I"m terribly sorry to hear of your experience, it sounds horrible. But fortunately, there are also thousands of other women who have had BC who are doing fine and have moved on with their lives and don't need this board.  That doesn't mean they don't exist. 

AlaskaAngel

Hi Digger,

Yes, that was my point, that most of those who are not within a few years of treatment either didn't make it longer or have moved on entirely, and so most of the people who write here are people who have not yet experienced the long-term effects of treatment.

Thanks for your sympathy for my situation. I come here as one person, sharing what I know, good and bad.

Last year while in the Lower 48 I went to the cancer center to connect with counseling as a breast cancer patient, but was told that because the trauma of treatment is so extensive, they are only able to counsel cancer patients who are up to 2 years out from treatment.

So they don't really have contact with whether or not the rest of us are experiencing trauma long-term.

A.A.

Kaara

that's-life:  Thanks for posting the article (I think) it made me so mad, because it brought back the memories of my friend dying of small cell lung cancer (very poor prognosis) and getting chemo up until about a week before she died of starvation from not being able to eat.  She was never referred to hospice, never got any end of life care, and died a miserable sad death while her husband was at work and she had only a nurse attending her at home.  Once I tried to have a talk with her about going off the chemo and having a better quality of life in the end, and she said she wanted to but her doctor and family didn't approve.  Now I finally understand the reasoning behind the choices some doctors make.  I just thought they were money grubbing SOB's!

thats-life-

kaara: its a horrible article I know...but we can arm ourselves with the hard to swallow information, and make ethical choices that we can live with, for ourselves. Its a communication issue too, and an honesty issue. Im sorry your friend didnt have more care in her end stage.  

Anonymous

A.A., thanks for sharing. I totally agree that we should be considered and treated as a whole, not as some disconnected parts. I am presently seeing a total of 10 specialists !!!! none of whom have the total picture. When asked about a connection between the thyroid and BC, my onc just shrugged. "I don't believe in it" was his reply.....I see an endo for other problems and when I asked him about the same connection, he was even more dismissive. We have a verrrry looong way to go before we see all the prima donnas coming together, except maybe at a golf tournament...

Anonymous

Good point, Medici, about the treatment of ourselves as a WHOLE. That is why I prefer DO's to MD's in general, because DO's are trained to treat the WHOLE body with consideration to the individual parts. My GP was a DO whom I loved and trusted, but unfortunately retired and I am currently seeing an MD who is okay, although I often feel like I know MORE about BC than she does. And I probably do! LoL! But my BS is a DO and I find her to be much more open to naturalpathic remedies and treatments than some of the other doctors I have seen. I would prefer that all my doctors were Osteopaths, but in my neck of the woods, they are few and far with many more MD's than DO's especially in the specialties.

Leia

Digger wrote: "I would imagine that the thousands upon thousands of other women who had chemo many years out don't feel the need to use this board because they're doing fine."

Digger, I would suggest that they are dead. From the chemo. And that is why they are not posting here, anymore. Those thousands upon thousands, "who had chemo many years out don't feel the need to use this board because they're doing fine."

I am still here, posting, no chemo, no radiation, no drugs. Yet, I am still alive, on the Alternative thread, tryin to warn other women off of this Medical Industrial Complex mode. Of more chemo, more radiation, more drugs. Which is nonsense. 

I don't see your breast cancer diagnosis, it is not in your signature. What kind of breast cancer did you have?  What type of chemo did you have? And how are you doing, today? How did the chemo help you? 

I would really be interested in hearing how you are coping with this dread disease.  

crazy4carrots

Leia -- Do you have ANY idea of how your posts can be both very hurtful and insulting?  I had chemo, so I guess you are suggesting that I will be dead within the next 10 years or so because of it.  Oh, and not just me, but thousands of others like me.

Enough already, please! 

Wabbit

I had chemo too.  Before you were diagnosed in 2006 ... so I guess I win if we are having a who is still alive the longest race.

Several of the women who were around back then are still on Facebook ... just not here anymore.  So you are wrong again. 

digger

Whoa Leia, that's a really negative attitude you'e got there along with your smokes.  Yep, you're being a little crass tonight, don't ya think?  Think positive thoughts okay?  

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PlantLover

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