List of all of the Side Effects I deal with that wreak my QOL
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Bessie....I have no interest in arguing with you and you do make some good points. All I know is the compliance rate for completing the recommended time on anti hormone therapy is 40-50 percent. IMO that is not an effective treatment. I will say it again and again. We need to speak up for better treatment options!
Macb04...I'm so sorry you had to experience that! Completely unprofessional and uncalled for! This is not the same at all but when I first asked my MO what the side effects of anti hormone treatment were she said there are none! Absolutely no excuse why this should happen.
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Mac, I don't know that I would say that the system is broken, but I'd say that the system needs a good shake-up and a massive overhaul.
Having spent many years on this site, I am shocked at how many doctors lie to their patients, usually in an attempt to coerce the patient into treatment. After all this time I shouldn't still be surprised when I see it happen, but I am still shocked today when someone posts and tells us what her doctor told her, which I (and many others here) know to be untrue.
Being a research junkie, and having dug around about this stuff for years, I am reasonably well educated about some aspects of breast cancer diagnostics and treatment. But I'm not a doctor. It makes me very uncomfortable to post to someone that their doctor isn't telling the truth about the need for or benefit from a particular test or treatment, or isn't being honest about the risks and side effects of a treatment. You see doctors pushing patients too quickly into surgery when the patient has questions and wants a second opinion, with the doctor scaring them about the need to not delay the surgery. You see doctors downplaying or downright denying side effects in order to get reluctant or questioning patients to go ahead with treatments, sometimes in cases where the benefit of the treatment, in terms of reducing recurrence risk, is small. You see doctors who refuse to answer questions or are rude to patients who don't instantly comply.
I mentioned in my earlier post that my MO's research interest is the side effects of cancer treatment. As such, he is much less aggressive than most MOs I see referenced here when it comes to recommending treatment. That seems wrong to me - not that my MO is less aggressive on treatment - but that other MOs don't put the same amount of weight on assessing the benefits of treatment against the risks, and don't recommend treatments based on the overall impact on the patient. And don't provide an honest accounting of the risks and side effects of treatments. Of course that's not all doctors - I've read many posts about excellent, caring, honest doctors who welcome questions and view patients as equal partners in their care and treatment decisions. But there are simply too many egotistical tyrannical doctors still out there. The good doctors need to step up and not stay silent - because they know who the @§§€§ are.
As for researchers and those who develop treatments and medications, I don't subscribe to the "Big Pharma Is Bad" theory. Many researchers get into the field because of a personal connection to a disease, or because of a desire to do something amazing - find a cure for a disease. So I believe their motivations are good. But when you spend your life looking at lab results or digging through detailed test results to find out if a treatment or drug is providing benefit, I think it's easy to lose sight of the patient, the human being who is being subjected to the treatment. There is so much focus on curing the disease that they don't see that they are killing the patient from the side effects. This is where I think research needs to change. Researchers need to be trained to look at the disease in the context of the whole patient.
We shouldn't need to remind so many of our doctors to treat us with respect and honesty and to look past the disease at the whole human being. And we shouldn't have to remind researchers that they are not trying to find a treatment for a disease but for a patient.
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Well said, Bessie.
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Beesie, you are missing the point of my last comment about that sadistic doctor hannah linden at scca. I wasn't agreeing with her, instantly, wasn't telling her how bright and wonderful she was, and so she abused and terrorized me. She was viscious and lashed out in order to make me suffer. She used the worst thing she could think of to generate fear and despair in me, saying they would "cut off my arm"
Do you understand her supervisors, and the Patient Relations Department covered up her unwaranted criminal abuse of me? It's like they thought she was allowed to abuse and terrorize me and other patients, and they didn't give a Shit how she increased my suffering.
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I, sadly, understand!
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mac, I tend to be analytical and my writing reflects that. I didn't miss your point. You had one of the "many egotistical tyrannical doctors" who expect patients to be compliant and who lash out at patients who ask questions and don't fall in line with their recommendations. The fact that she could act this way with you and that your facility allowed her to get away with that type attitude towards patients and behaviour with patients is beyond unacceptable.
My comment was actually a response to AliceBastable's statement that "I blame the disease, not the researchers, physicians, and technicians". I do think that there are many bad doctors out there - and I do blame the doctors - but I also know that there are many good ones. And I put some responsibility on the good doctors to speak up and call out the bad ones. At your facility, surely there are some people who know that what happened to you is unacceptable. To me, the problem is not just your doctor and the systemic approval to what she is doing, but the fact that the people there who know better are keeping quiet.
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Beesie:
You posted that wonderful chart on the side effects of treatment for prostate cancer. Have you ever seen one for BC treatment? If so, could you please post it. I would be curious if BC patients are ever shown this by their MD's for decision making about their care. I wish I had access to one.
I have been lied to by physicians from the beginning of my BC journey and find that it is now hard to trust, let alone take medical advice from them. It started with the radiologist who performed my US that led to my BX. He scared me half to death and sent me into a panic state that led to some poor decision making on my part. I did not have access to a nurse navigator though the hospital system touted their availability. My BS quite frankly turned out to be an ass and I fired him after my second lumpectomy for lying to me. My RO blamed the surgeon for axillary cording that developed during radiation, never disclosed until a year later why I had so many boosts even though I asked questions repeatedly and assured me that reconstruction needed to be delayed for 18 months. I then developed breast lymphedema during radiation and still have episodes where it flares up needing a referral to a lymphedema specialist. It was not listed as a SE when I signed my radiation permit.
The RO knew full well that between the surgery and radiation damage (breast fibosis and tissue volume loss) that it was not a possibility but referred me to a PS anyhow. He also was an ass. After he made me watch a film on reconstruction, he then examined me and disclosed that it was not an option but "he wanted photos" of my deformed breast for his rogue's art gallery. I was incensed and sent him a letter later telling him how unprofessional he was. This was the last straw with the RO and I told her how she had destroyed my trust. Because I am loath to change to another now I will finish out my time with her but not recommend her to anyone.
My MO is aware of the SE I had from Arimidex and I switched to Femara where the SE are crippling me, causing hair loss and weight gain. She offered exemestane but I declined and also Tamoxifen which I also declined because I still have a uterus, not functioning, but still there. It seems changing drugs just means you develop a new set of SE and/or the need for supplements or other drugs to counteract the SE's. At my last visit she mentioned that I would after 5 years on Femara I will have "5 years of continued protection" against BC, which is not true based on my research and I do plan to explore this with her on my next visit. She also blows off my concern about hair loss and told me it will grow back after I stop Femara which I also found may not be true.
I would just like truth in advertising from my MD's. I have really good medical insurance so I am blessed in that sense but find that doesn't necessarily result in good care nor access to caring MD's.
As far as cause of death related to BC, if you die of heart disease caused by BC and /or its treatment, it will not be recorded as such. Your cause of death will most likely be recorded as heart disease.
Sorry to go off on a tangent and perhaps I should have posted under the "Anger" topic but 4 years ago pre diagnosis, I took 3 meds: Lipitor, Allegra and Prevacid for a total of 4 pills/day. Today I am taking over 20 meds or supplements per day to treat BC and its SE. This is a really bitter pill to swallow.
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Betrayal, what was your age at diagnosis and your Oncotype score?
I have wonderful doctors, and when I had severe side effects from Tamoxifen my oncologist supported my wish to discontinue because I was extremely low risk. From your stats you look like you're very low risk for recurrence, too..
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Betrayal, most of the charts I've seen that list the side effects of breast cancer treatment focus on one particular treatment, such as chemo or radiation.
But here are a couple that I've found that attempt to cover everything, although I'd say they've each missed a few things. This first one is one long chart, but it wasn't very clear so I enlarged it and cut it into two:
This second chart is pretty high level, but it comes from here: Survivors of Breast Cancer: Exploring Post-Treatment Physical and Psychosocial Side/Late Effects and their Interventions , which is a fairly comprehensive study of the side effects of breast cancer treatment.
I doubt that many breast cancer patients are given a comprehensive list of possible treatment side effects before they make their decisions on treatment. That's very wrong, but I think this is true with other illnesses as well. My BIL had colon cancer and he was told nothing by his doctors. He wasn't the type to question doctors so he remained happily oblivious, until he had no choice but to face some hard truths and reality.
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SummerAngel:
I may be low risk according to what you see on the screen but have not been in the positive side yet for avoiding BC SE's. If it could go wrong, it did so I am not feeling too lucky about being "low risk". None of us truly know if we will remain "low risk". We all have one thing in common, BC. The risk of BC for my age group was less than 4% and yet here I am, a member of the club no one wants to join.
Only 25% or less require a second lumpectomy; yup, I got to join that club. With a negative sentinel node (only one removed), my risk for lymphedema should have been low. Nope, got to join that club as well with axillary cording so painful I could not lower my arm and had to beg for opioids. Sentinel node incision placement and scar means buying a comfortable bra is not in the cards. Was told by surgeon I would be able to wear a bathing suit and it would not show. He lied because it shows in every sleeveless blouse I wear so I need to wear a cover up. I haven't worn a bathing suit in a decade so that was really not welcome news from him. BTW, it would show if I were to wear one.
Margins on second lumpectomy did not meet standards of > 2 mm so I got to have 8 boosts in the 33 treatments I had. As the RO put it "my nipple was collateral damage" and I have not really been able to see it for nearly 3 years it is so tucked under due to volume loss, surgery and radiation. So I now have to wear a padded bra because otherwise I only have one headlight on under t-shirts. Breast fibrosis means I have ongoing breast pain and sometimes experience a tearing sensation within the breast. Heart and lungs were most likely affected by scatter since it involved left breast even though I used breath holding technique. Machine malfunctioned more than once so not sure of what dosage I got and literally ran out of air during this. I do know I got the max Grays so cannot ever have radiation again. Not that I would agree to it any way. Never felt so violated in my whole life.
MO will not consider stopping AI's because I had IDC/ILC and DCIS. Concern is the ILC which is the most likely to recur according to her and that occurs after the 5 year mark. It is my decision but I do not want this to come back nor will I seek treatment if it does. So I will hang in until I reach 5 years but do not intend to just suck it up. I want her to acknowledge that the SE's do extract a toll on our QOL.
One positive was a Oncotype score of 18 so no chemo. So yes, I am luckier than so many others by virtue of being considered low risk initially, but that does not make this any easier to accept. Should I add PTSD to the mix as well? Yup, got that too. So risk for recurrence, that's a crap shoot yet to be determined. This is a horrible disease with no real cure and I would not wish it on my worst enemy.
You lucked out to get such caring MD's, I thought mine were until they revealed their true self. I feel objectified by them. I apologize for the tirade but I wish all of us received the same quality of care. So I envy you in that sense.
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Beesie:
Thanks for these charts. I want to print the one and discuss it with my RO and MO. I admire how knowledgeable you are and how you are so willing to assist everyone.
Do guess if I were to die of another disease I would consider myself a survivor of BC but until that happens, I can't. My cousin thought she was a survivor, only for it to recur in her liver and brain after a long respite. I know I could not endure what she did. Thanks again for all you do for us.
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Thanks for the empathy Beesie. I really felt that tons of other doctors and providers of all kinds at scca knew what an evil and vindictive evil person hannah linden is, yet tolerated her behavior. They are as guilty as she is of terrorizing and traumatizing me and have really bad karma I am sure. I wish their own warped, useless treatment upon them. It would serve them right. Then they would finally develop compassion.
Betrayal, I get where you are coming from, as I had more substandard doctors than good ones. I don't trust any doctors and never go back at all. I haven't seen any of them for the last 6 years. I only see my oncology trained Naturopath.
I have such bad PTSD that I can barely survive having my teeth cleaned at the dentist, and can just start crying. I am resigned to using the gas in order to cut down on my fear and anxiety.
I really feel it is a complete crap shoot over whether you get good doctors or complete a**holes. The cancer industry shouldn't condone cruel and mean-spirited behavior. We have enough hardships when struggling to survive without petty, nasty behavior being inflicted on us by entitled children with the title of md.
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mac- You can do what you want with it, but I had major PTSD way before I was diagnosed with BC. I had my first panic attack one evening back in the 90's one evening, and it took me a few days to figure out what was causing it. I finally figured out that a traumatic event that had occurred seven years before resurfaced, and I started having flash backs about the event. I immediately realized that I had to see somebody about it, and somebody that was recommended to me recommended another therapist who she thought could help me more. I started going to the second therapist who tried emdr on me, and it did not work, but I was already seeing somebody for neurofeedback for stress reduction, but I did not tell her about the incidence that happened seven years before because I thought I was over it. She immediately started me on alpha theta which also brings up repressed memories like emdr, but it takes a lot longer, and it worked, but it probably took me at least six months, before the flash backs and panic attacks totally went away. I did not go back to see my therapist for three months, because I did not fell comfortable talking about the situation. I think now the reason the emdr did not work was because I realized a few years later that I had a learning disability.
I have tried a lot of alternative therapies, and some have worked and some have not. I just tell people to try it and if it works for you great, and if it does not, then move on and try something else. There are lots of therapists that do emdr, and it is done a lot with veterans. If it works it usually only takes five sessions or so. It is much harder to find somebody that does alpha theta though, and it is a lot more expensive because you have to go twice a week for six months. There is a board that lists all of the emdr practitioners, and if you google neurofeedback you will find people that do alpha theta.
I used to have a friend who cured her rheumatoid arthritis by radically changing her diet, and she was convinced it would work for anybody with RA, when it only works for a small minority of people who have it. I also have tinnitus, and I have had major hearing loss since then, and I am still looking for the cure for it. I had mostly just learned to live with it. There is next to no research being done on tinnitus, and millions of people have it.
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Thanks for that info on Neurofeedback. I know what the triggers for PTSD moments are for me, basically anything medical involving a potential for pain. I became an unwilling expert in pain, had 17 surgeries in 4 years. First 2 for the cancer industry butchery, and the next 15 surgeries from problems that they caused that made reconstruction nearly impossible. I refused to be stuck with a prosthetic, and kept going till I had a measure of sucess. I can at least look good in clothes, but between all the surgeries, the burning straight through to to my back along with the bleeding open sores the rads doctor caused, I experienced an immense amount of pain and suffering. I used to be able to handle pain, was in labor 21 hours with my second daughter, would actually say I was rather stoic.
They broke my spirit in ways that have only partially healed because I experienced people who were "inconvenienced" by my pain, after the many surgeries and the surgeons were in a big f*cking hurry to move on to the next one on their list, or by the BS RIPPING off the surgical tape at the follow-up visit so they could show my mutilated body to the dog like devoted Residents who thronged the room without my consent.
Now medically induced pain scares the f*ck out of me. I also hate them all and can throw a 747 farther than I can trust any doctors. So it's ok, because I avoid the whole sh*t show of the endless merry go round of testing, and therefore avoid the triggers. I take good care of myself, and lots of women jump through tje bc industry hoops and still die in agony. Seems to be a complete crap shoot anyway. At least this way I avoid the semiannual and/or quarterly torture that women endure who go back in. Best way for me to keep happy and sane.
I am actually interested in Neurofeedback to see if I can help my brain which shows poison chemo damage that scares me, because we all know it increases our risks of dementia.
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Mac - here’s our book. I’ll add to this later
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I often wonder - what kind of cancer these people who have done so much to hurt us, will get
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I know something about neurofeedback, because I am a court-appointed special advocate for foster youth, and it was THE difference in my youth's healing from PTSD. Her progress was so rapid and dramatic that I tried it for myself to know what benefits it might bring me. Not beginning w PTSD, I became more relaxed anyhow... more placid in the face of irritations, better/deeper/uninterrupted sleep.) It can help anxiety, depression, seizure, lots of brain based issues. Some people say this system helps tinnitus too... it helps the whole brain become more efficient and well-regulated.
The system I used was "Neuroptimal" which is one size fits all -- it is not "asking' the brain, in any given area, for any given frequency (like Alpha Theta does). Instead it is works w the whole brain, on a network/arousal level and is simply a mirror of microsecond by microsecond activity. You listen to some rhythmic recorded music in headphones while hooked up to sensors, and there are clicks or skips in the music when your brain is momentarily dysregulated. The R brain notices, very rapidly, that it is being mirrored. (This is nothing you could consciously notice.) But the R brain does notice, and very rapidly uses the information about its own jumpiness to move towards more efficiency and to calm itself. Instead of taking one's emotions down from a ledge like cognitive approaches do, dynamical NF begins at the machinery end of arousal, making the whole machine calmer. There is no efforting. The effect was palpable in about 6 sessions for me and I did 20 total. Sessions are 35 mins. My youth did about 40 and could probably still benefit from more. But holy cow she radically and fundamentally changed, after 3 years of CBT and effort did very little.
Can't say enough good things about Neuroptimal...
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Interesting SantaBarbarian. Thanks for posting.
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I ran across this senior, in her late 60's. We got to talking and she told me a Tamoxifen horror story. Caused her liver damage. Wound up having a liver biopsy, where they finally, irrefutablebly blamed it on Tamoxifen.
Says her liver enzymes are still elevated several years later.
Hers is the second Liver Damage story related to tamoxifen that I have heard in the past few months. The possibility of severe liver damage was never told to me.
Did any of you women hear about potential severe liver damage related to tamoxifen? Both of these women who had this occur said they wondered why liver monitoring isn't done regularly if this kind of catastrophic injury to a crucial organ like our liver can occur.
One woman had the liver failure occur in as little as 4 months on tamoxifen. She had Fatty Liver. That is fairly common actually, and wonder if this is a contraindication to tamoxifen use?
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There is research about this.
Association between tamoxifen treatment and the development of different stages of nonalcoholic fatty liver disease among breast cancer patients
Author links open overlay panelHsiang-JuPanaHong-TaiChangbChien-HungLeecShow more
https://doi.org/10.1016/j.jfma.2015.05.006Get rights and content
Under a Creative Commons license
open access
Background/Purpose
For estrogen-receptor positive breast cancer cases, tamoxifen has been the most important adjuvant hormonal therapy for the purpose of reducing recurrence rates and prolonging disease free survival. However, several side effects have been noticed, and fatty liver is one of the most common side effects among them. Since fatty liver is a common problem in the general population, we wanted to examine the effects of tamoxifen under pre-existing fatty liver conditions and evaluate the prevalence of tamoxifen-related impaired liver function.
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Yes, the fatty liver side effect is well documented. My MO didn't explain this side effect and it wasn't in her print out. When you pick up your prescription it states it in the pharmacy print out under side effects. Also, I read everything I could on Tamoxifen and then discussed this side effect with my primary doctor. My Primary is the one who monitors my labs. I just had a liver function test done and results were normal. There are side effects that you can monitor as well. A low carb diet helps.
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Not trusting a thing your “MO” tells you also helps.
You don’t think that non disclosure of this potential added health problem and not being monitored is a betrayal?
Are you a person or a lab rat
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Excerpt below from Wikipedia regarding the Aberfan disaster 1966. Exactly the same as how we're treated. Non disclosure of known risks, Complete denial of blame when any complaints are directed at them (“MO's) and “resistance" to help us after damages occur. Exactly the same.
Profits and procedure before human lives, cover ups, lies, denials and betrayal.
“The organisation's chairman, Lord Robens, was criticised for making misleading statements and for not providing clarity as to the NCB's knowledge of the presence of water springs on the hillside. Neither the NCB nor any of its employees were prosecuted and the organisation was not fined.The Aberfan Disaster Memorial Fund (ADMF) was set up on the day of the disaster. It received nearly 88,000 contributions, totalling £1.75 million. The remaining tips were removed only after a lengthy fight by Aberfan residents, against resistance from the NCB and the government on the grounds of cost.
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rubyredslippers, I'm not a lab rat and I am not stupid. My neighbor is looking for new tires for his car. So far he has called 3 places for quotes and did research on the internet. I have researched and I have read anything I could get my hands on. I understood the odds of what I decided to do. My MO is only one part of my health care team. If I need further testing or a different medicine then I have someone to order them. If you don't like your MO then move on. That is if you have one?
Aberfan disaster 1966 means nothing to me and has nothing to do with BC.
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I agree with Flashlight. I would never pick a doc for any major problem without at least a 2nd opinion and maybe a 3rd. And yes, we are all counting on an entire team - MO, BS, PS, RO and maybe a nurse navigator or a counselor likely an OB/GYN or PCP who was our first stop.
Nor would I hesitate to switch docs if I found my judgement was faulty and I got a dud.
That said, docs are human just like us and they don't know everything. Find one who is willing to learn from every patient.
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Indeed you're not a lab rat. That's why I'm saying it's criminal to hand you a medication with serious potentially life / body altering side effects and “not explain" a side effect and not be monitoring you for issues.
my point is women are allowing themselves to be treated badly, like science experiments instead of people with a right to make a fully informed decision. You found out an a side effect fromthe medication leaflet? Yet the person who prescribed it said nothing and couldn't care less?
I've had a long time to think about what's happened to me and the Aberfan disaster meant nothing to me either - it was reading about the lies, cover ups and denials that meant something to me and my comparison to the medical oncology industry is valid. I'm not comparing it to breast cancer - I said it’s the same as how we’re treated. I was first diagnosed in 2008. I've been through a lot and don't really appreciate your inference that my thoughts are irrelevant
furthermore I didn't find going through the process of seeing drs was anything remotely like trying to buy the best tyres. I was scared, tired and didn't know how to do anything other than just see whoever I was steered towards and some of the things I've experienced, and my dad experienced when he was being “treated “ for cancer, have been absolutely disgraceful. Ptsd is real and it often prevents one from just deciding to shop around like nothing's happened.0 -
I've found when I want to know about a medical procedure, I ask a doctor. When I want to know about a medication, I ask a pharmacist. Medical doctors do not always know about medications, particularly side effects. A pharmacist is a good team member to have on board
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lots of dud medical oncologists out there MinusTwo! They're all peddling the same poison and I've been subjected to enough trauma to have any desire to seek out any more.
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dogmomrunner - they know plenty. They hope you don
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I totally agree my doctors are not telling me enough at all about options and effects and it is frustrating. So I will vent a little now too. My BS and her "new" trainee were the worst. And even worse is they are rude and dismissive when I talked about things I read. I HATE when they say stop reading stuff and don't believe what you read. Reading these posts is knowledge. Now my chemo nurse won't even let me finish my sentence and says it. I dumped the BS, but am stuck with the chemo nurse for now. BS NEVER even said the word "lymphedema" to me. She never introduced herself to me, too important to not know who she is. She sarcastically said day of surgery, any questions, although we have talked a lot. She would not see me or talk to me until 2 and half weeks after surgery, and I was distraught with negative nodes. I read the NCCN guidelines and that really pissed the BS off when I pulled it out because she didn't follow it or inform me of the options. I realized after surgery from reading that my PS told me very little and I'm like what is in me? What is Alloderm? Are my TEs pre or post? TEs removed to due hospital surgical infection. Talk about cover up. Did they report it I wonder? Yet my MO showed me his NCCN guideline on first visit and was open to talking options. My third opinion with Sloan MO was awesome, but she is not my Dr. They provided handouts after talking also. I haven't had radiation or hormone therapy yet and you are scaring me, but am going forward. Doing chemo now, have chemo brain and hope it's not permanent. So far I feel better in second week. My main concern regarding radiation is lung damage or cancer due to history of casual smoking. I was very impressed with my RO so far, he talks a lot, but was very optimistic things would go well. However, I also want to present a different scenario in case you are not aware, not trying to be argumentative. I have experienced the opposite regarding aggressive treatment. In my case doctors are trying really hard to back off on aggressive treatments and I have been fighting the whole way to get them because I want to be aggressive due to limited trial data. BS would not take out additional nodes even though I had positive nodes and originally said no chemo or radiation with positive nodes less than 4 (Not what is says in NCCN guidelines). MO second opinion said no chemo with positive nodes and a gray area oncotype. Sloan Dr. said yes to chemo, but less aggressive CMF to avoid permanent side effects. This is a big Sloan push. TAilorx for node negative was all about backing off on chemo, and the ongoing RxPonder is all about backing off on chemo for node positive. And they are also considering CMF for triple negative. Two out of 3 MOs said no Tamoxafin, do ovarian suppression and AIs instead. I will get my ovaries removed instead of taking another med. So my experience with the Drs. I saw was all about backing off on aggressive treatments. And from what I read its was all about spending money to back off on treatment. But I realize for ER-, HER+ and other aggressive cancers this may not not the case. You didn't post your dx. And I realize I don't have bad permanent side effects yet and feel horrible for what you are going through.
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