List of all of the Side Effects I deal with that wreak my QOL
Comments
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rubyredslippers, " I was first diagnosed in 2008. I've been through a lot and don't really appreciate your inference that my thoughts are irrelevant"
Sorry....isn't that what you said to me?! I don't share your views, but I am willing to listen. You become angry if I don't agree with you. We all have a history. We were all scared. My personal view is that you have to be your own advocate. Maybe that doesn't happen right away, but it should eventually. I am sorry for what you had to go through. What I meant from the tire comment is that a person can do research on tires, but when it comes to something as important as their health do nothing? It doesn't make sense.
My dad was a POW survivor. It never stopped him from asking questions or learning especially after he was diagnosed with lung cancer in 1988.
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I want to second the point that doctors don't know nearly as much about medication as pharmacists. There are many thousands of prescription drugs, the number rising every year. Pharmacy used to be a bachelor's degree and is now a doctorate, mainly because of the sheer number of drugs and the time needed to learn about them all. Every time a person receives a new prescription that person should discuss possible interactions with their other prescriptions with their pharmacist, and should read the entire pamphlet that comes with the prescription. Doctors, in general, mean well and do the best they can. They are like anyone else, and are not part of some grand conspiracy to mistreat their patients.
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I’m not sure “being alive” is a good enough answer. I’ve read studies that show a more toxic chemo only adds months over the less toxic alternative, some people get surgery and no chemo and are still alive, some go into spontaneous remission...but it’s poison, slash and burn for all of us. It’s barbaric and we all comply because if we have a bad attitude then we aren’t being good cancer warriors. Why don’t we deserve full disclosure that includes risk and probabilities?
Mac, you speak for me...thank you! Hope some newbie reads your post and can avoid some ofyour pain.
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I think we all have issues, opinions, decisions and anxiety’s that are all important and specific to us. I agree drs are not telling us enough. I agree my ps or should I say his assistant screwed up several prescriptions that the pharmacist had to fix and I had to drive 1/2 hour to pick up. I agree we need to do our own research and follow our gut. I didn’t want to be a lab rat for “under treatment”. I still have anxiety that cmf is not strong enough as most people are doing TC. But this thread is helping that a little. I still don’t know what chemo Mac did. I’m a little more concerned about radiation now. But am more concerned there is cancer in my nodes. We can all get along and help each other😃.
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JRNJ, Thank you for your comments. Have you read through some of the topics like: Starting Radiation November 2019? They are really helpful and talk about a lot of the concerns when going through radiation. I think you can find one for each month. Good luck to you.
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Thanks! Two more months of chemo so focusing attention on botched reconstruction decisions. My ro was the most thorough dr I have so far. Talked for over hour unprompted. But when I met with him tes were in then later removed. the issue is fitting reconstruction in successfully. I think the plan is tissue expanders between chemo and radiation in order to stretch skin before radiation. Need to coordinate drs because they are all private, not at a cancer center.
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Shelligirl - "it's poison, slash and burn for all of us". What, exactly, do you want doctors to do? And no, it's not "all of us".
Don't forget that it's your body, you can refuse any treatment you wish.
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I've been reading this thread with great interest. What is very clear to me is that our perspective on bc, doctors and treatments is that they are totally colored by our own experiences. It is very unfortunate when you have negative experiences that you weren't prepared for or se's which you were not fully informed of. It is devastating to read of those whose negative experiences were compounded several times over.
I whole heartedly agree that we need better treatments but our treatments are what they are right now and though we haven't made the progress that most of us need and want, I believe there are many wonderful doctors and researchers working toward that end. In my understanding, as a lay person, breast cancer is more complex than I could have ever imagined (I didn't even know there was more than one type of bc, initially). I can't even begin to imagine it's complexity on the deeper level that researchers deal with.
As to any given doctors care and ability to communicate, there are good ones and not so good ones. When we are dx'ed, we are very vulnerable and may not be in an emotional position to fully evaluate if our doctors are a good fit for us. All I can say to anyone going forward is if you feel any doubt about your care providers do not hesitate to make achange.
I realize I have been rather fortunate. Yup, fortunate at stage IV. I changed my mo very early in the game and have had 8+ years with a great mo. Sadly, she has moved 😢. I meet my new mo in February and hope it's a good fit. If not, I will move on. Although fortunate, I have not been immune to mistakes and side effects. My collapsed lung saga is a long story, but suffice to say it included 3 separate chest tube placements, a week in the hospital and 4 weeks at home with a portable chest tube. For as much as this was an incredibly low incident complication (of port installation) I had been fully informed about it as I have been about all other se's I've had to deal with. Throughout it all, my doctors have been very kind and compassionate.
I am not diminishing the negative experiences that some have had and I have no doubt about the negative effects they have had on people's lives. But, there is no “all of us" nor all doctors nor all treatments nor any blanket generalizations regarding bc and all that comes with it. We all want better treatments and, of course, we all want a cure. My grandmother died in the early 1960's from MBC. I have lived with MBC for 8+ years and given what I remember about my grandmother's illness and death, I would said that quite a bit of progress has been made. Is it happening fast enough? No, we who have bc wanted a cure yesterday! Are the treatments better, in terms of QOL? Compared to my grandmother's treatments, that would be a yes, but we still have a ways to go.I hope those of you suffering from PTSD get counseling/help with that. It won't change the past but will , hopefully, give you a path to a better future.I wish you all peace and healing in the new year.
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Excellent post, exbrnxgrl! I agree completely
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exbrnxgrl, Very nicely said. Thank you for your post and kindness.
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Thanks exbrn. Really appreciate your sense & your comprehensive thoughts.
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Flashlight - "Sorry....isn't that what you said to me?! I don't share your views, but I am willing to listen. You become angry if I don't agree with you. We all have a history. We were all scared. My personal view is that you have to be your own advocate. Maybe that doesn't happen right away, but it should eventually. I am sorry for what you had to go through. What I meant from the tire comment is that a person can do research on tires, but when it comes to something as important as their health do nothing? It doesn't make sense." My dad was a POW survivor. It never stopped him from asking questions or learning especially after he was diagnosed with lung cancer in 1988. "
Firstly, what I said to you that seemed to prompt your reply was are you a person or a lab rat? This comment was questioning your statement that you found out about a side effect from a medication leaflet. You said that the doctor did not mention it, and only your general doctor is monitoring you for this potential complication. My statement isn't about you or whether or not you are stupid. It's a statement directed at your MO - I'm saying we deserve better. Your angry response was to tell me that you were not a lab rat and you weren't stupid - that was the first angry response as I see it. I made a comment about your standard of care - you reacted with a comment that was full of anger, but now 'you're willing to listen and don't become angry if I don't agree with you" - seems to me that you weren't really listening and you did react angrily. I then mentioned how a company reacted to a class action about how their lies, cover ups and neglect caused the deaths of over 100 school children - with denials and more lies. I've experienced this same defensiveness and dishonesty in terms of the MO world and their drugs, and over 11 years, have read countless stories from other women who have. You however, said "this means nothing and it's got nothing to do with breast cancer" You really need to have a look at your own reactions and statements before you go telling me off for a second time.
"We all have a history" - yes, and from your bio, you're one year off diagnosis and treatment - you don't mention having had chemotherapy. I question how anything so far has had such an impact that you're here telling us all how to feel and telling me off for mentioning something that according to you "has nothing to do with breast cancer".
I was diagnosed in my thirties with grade 3 cancer. I had a recurrence recently. I've had multiple surgeries, two lots of radiation, chemotherapy and the ptsd from dealing with MO's in particular is massive. I have Chemotherapy Induced Cognitive Impairment - this effects my job mainly. It means I struggle with memory - not remembering conversations a day later, and get easily confused when it comes to recalling information. The medical oncologist that prescribed chemo drugs to me NEVER mentioned this potential damage to my brain. I had a right to know. I also now have to have my blood monitored as I have raised levels of a bone marrow substance that can lead to Myeloma – I am convinced from everything I've read, this is chemotherapy induced. Do you think any doctor is going to admit to this?? It's the Aberfan disaster all the way.
I went on to see a different MO and told him that I was refusing Tamoxifen - due to the research I did and "the questions I asked" alerting me to the fact that this is a very serious, carcinogenic drug that doesn't stop bc returning, if anything it merely puts it to sleep. It has been associated with a fatal form of gynae cancer, glaucoma, liver damage, severe depression, vaginal dryness, major aches and pains and many women feeling like they "are 90 years old". Rather than respecting my decision and being prepared to have an honest discussion about all potential side effects, or the potential for other serious health complications for a mere 2-3% potential benefit, I was glared at, told that if I got cancer of the uterus/ovaries "we'll just cut them out if that happens", told about how I'd die if I didn't take Tamoxifen and that I would be on my own in the future and they wouldn't help me. This was the beginning of my ptsd and major depression that I struggled through for 3 years - with no support groups or psychological support available to me. I worked through treatment and afterwards, so I didn't have the time available to treat my bc aftermath like something that I calmly explore like a search for the best tires.
When I had a recurrence, I saw another MO - who told me that as I was reluctant to take the dangerous Tamoxifen, I could consider having Ovarian Suppression. I decided I wanted neither but reluctantly returned to see yet ANOTHER MO as she'd gone away on extended leave not long after I saw her, and he told me I could not have OS without Tamoxifen. He was rude and sarcastic and I lodged a complaint. His response? Deny being rude and he's even now denied that he believes that you can't have OS without Tamoxifen - that's not what he said to me at my consultation. I've seen 4 different MO's - two were so rude and horrible that they impacted on me in terms of trust and ptsd. One of them prescribed a drug that I accepted, but she somehow forgot to disclose really important side effects. I've asked key breast cancer organizations if they would stop using the phrase "chemo brain" as it's not helpful to the many women, like me, who live with cognitive impairment as a permanent side effect from the drugs we were given, and they refuse. You see, they have MO's on their board. It's not in their best interests to change the name of this problem from something that implies it's temporary and somewhat trivial, to the serious and lasting complication that it really is.
I had a psychologist who exclusively works with cancer patients tell me that cancer would return again (like she has a crystal ball and knows all) and even made a joke about my dad dying from cancer, and my having had cancer (when talking about my house being sold "tell them that everyone that lives here dies of cancer" – my dad lived in a nearby home on our property). I now live with the psychosocial effects of not only the cancer and the ptsd, but also the depression and added fear that she has forced onto me. Like MAC, I've dealt with a lot of assholes, been through hell and aren't' too impressed with the whole system. And there is a whole lot of ANGER involved. When my dad had cancer, he was told to drive to a hospital one hour away for treatment that his MO had declared she organised and would take 30 minutes, my dad only had to turn up and they were ready to go, only to see him arrive, be told no one knew what was going on, nothing had been organised and he ended up waiting 3 hours, for treatment that was not actually organised, and arrived home at 2am after leaving home at 5:30pm. My dad had the most aggressive form of brain cancer, it killed him within 5 months. The rubbish he experienced at the hands of MO's is a book chapter all on its own.
Yet, you tell me that I should just calmly and happily shop around for a new MO like I would if I was wanting new tires for my car?! Your experience in the past year seems to be straightforward. You have no idea how you're going to feel in ten years, especially if your cancer recurs and you go through it all over again. "Maybe it won't happen straight away but should eventually" - well good luck to you in terms of what you should do or feel. I said that I won't see another MO due to what I've experienced so far, and my knowledge of what they have to offer me in terms of side effects, QOL and what I've had to endure already. I don't need any more trauma from a MO.
I've had radiation too. It was a picnic compared to gruelling horror of chemotherapy which is like being taken to the brink of death then they stop, but I travelled (a 3-hour round trip) and spent two weeks staying away from home for a total of 11 weeks. 11 years ago, radiation was a very different experience to what I encountered two years ago - and therefore what you have experienced. Radiation has advanced in huge leaps and bounds. My RO described radiation 11 years ago as "the dark ages". Indeed, the burn I had was severe. It left my skin with a large brown discoloration that took 3 years to fade. My RO commented it was still visible on my breast 9 years later. But I had radiation again, travelling every day for 5 weeks, not 6, in order to try to reduce my risk of lymphedema. You see I also had a sentinel node removed 11 years ago. turns out it wasn't the sentinel node after all.
I sent my experiences about the problems that travelling daily for treatment, and staying away from home add to our lives - to a group who were trying to lobby the government for funding for more radiation centers for people who don't live in a major city, close to a treatment center. My story wasn't wanted - as I couldn't talk about the impact it had on children, as I don't have children. Women who didn't have to travel or stay away from home, but had kids, (stating "I'm so lucky I didn't have the added stress of travel" – well I did, but apparently no one wants to hear about how traumatic bc was for a childless woman) had their stories used as examples because apparently the sympathy factor of the impact of cancer on kids, meant more than a woman who actually did have to travel and stay away from home. My sadness, stress and despair though isn't as important though apparently. This adds more sadness and anger for me to process.
You see, I've been through a lot in 11 years. We've all been through a lot, but telling people to just get it together and seek a better doctor isn't entirely taking into account what people have already endured, and how they feel about the MO's they've already seen. Your experience with this is limited to the past year. And you don't appear to have encountered any bad doctors. If I responded angrily, it's because I have! I noticed that in another thread you told a woman that you think it's normal to wait three weeks from diagnosis to see a surgeon. Well it might not impact on survival, but you were the only woman who said that she think's it's normal (and experienced the same), and you seemed to forget to take into account the emotional impact that this would have - just be calm and have a nice Christmas?! Your experience with all of this might be a lot different to what others have encountered.
Ravelry, your post is most insightful and spot on.
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Thanks all. Our lenses really are colored by our personal experiences.
Rubyredslippers,
You have certainly been put through the wringer and then some. May the new year bring better things. Ravelry , BTW is part of my avatar. It’s a well known site for knitting and fiber arts that had a moment in the news earlier this year regarding a new policy on their site that people felt was political. Take good care.
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Our perspectives are always colored by our history, experience and cognition and no 2 people will always perceive everything the same. This struck me recently when there was the uproar about the Peloton Christmas commercial......many people saw it as the husband trying to send the message to the wife that she’s fat, out of shape, etc and others saw it as her being excited that she didn’t have to get to the gym in order to spin. Speaks volumes....
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Look, I didn't start this thread to have a fight with anyone. I started it because I really felt that my actual experience of "treatment" has left me with a tremendous burden of permanent side effects.
I know some of you have had a smoother path, but people like me and rubyredslippers have had the opposite experience and it's important that our suffering is not dismissed.
Here's a question, if the injustice doesn't happen to you personally, is it still important to speak up against it?
I thinks so. I don't have to personally experience every misery in order to comiserate with others and loudly decry the harm done to them.
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macb04,
I understand what you are saying and your negative experiences as well as those of others are horrendous. No one is dismissing your experiences and we have expressed our greatest sympathies. We have commiserated with you and condemn the harm that was done. I appreciate your blunt honesty regarding your maltreatment. So, my question to you is, as the victim, what would you like us to do? If it upsets you to hear that some did not share your experiences simply state that this thread is only for those with negative experiences. Do you want us to write to your medical providers/care facilities on your behalf? I am not being facetious as your pain is real and palpable but I am not clear as to what you would have us do.We have acknowledged the harm done to you, rubyredslippers and anyone else who has posted similar stories. We have all acknowledged the need for medical providers to be completely open in their disclosures about all possible ramifications of treatment and to acknowledge and make amends for medical errors. If you don't want anyone who has not had a negative experience to post on this thread, please just say so in your op. I hope you find some peace in the New Year, I really do.
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rubyredslippers, You have seemed to single me out for my post. Yes, I have just started this journey and it hasn't been a piece of cake. Yes, I didn't need chemo and for that I am thankful. I didn't mean to make light of your comments. I hope you find some peace and happiness in the new decade.
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mac, I don't think anyone has suggested that you and rubyredslippers shouldn't be talking about your experiences. I don't think anyone has dismissed what you've gone through or doesn't believe what you've been saying. You have both had terrible experiences with your treatment and the medical community and there is every reason to discuss it and vent about it. These things need to be out in the open. If it's not discussed, nothing will change.
The posts that I've written and the others I've seen don't challenge your experience or your right to discuss it, but simply make the point that not everyone's experience has been the same. This reaction is in response to comments from you and rubyredslippers that seem to paint the entire medical community with the same brush - blanket statements about how doctors lie and how awfully breast cancer patients are treated. While maybe it's my interpretation, I read into these comments the implication that there is some level of intentionality on the part of the medical community to mistreat female breast cancer patients (or at least ignore their needs).
The responses I've seen are comments to the effect that not all doctors are like that. Some of us have had great doctors. Some of us have had positive experiences with our treatment, even when things haven't gone well. That doesn't negate your experience but I think is an important point to make in light of the blanket statements. Recognizing that some patients do run up against such horrible doctors, in my earlier posts I was thinking out loud about why it might be that some doctors treat patients as poorly as they do, because I don't believe that most doctors, even the horrible ones, are being intentionally cruel. My thought is that maybe it's training and focus - the medical community (including, among others, our doctors and the scientists who develop meds) are so intent on treating the disease that they don't remember that they are treating a person, a real human being, who in many cases is suffering severe life altering side effects from these treatments that are meant to save their lives.
I think your post is important. The types of experiences you and rubyredslippers have had should be discussed. Those of us who haven't had these types of experiences should know that it happens so that we watch for it and decry it loudly, exactly as you say.
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Yogatyme: Your example of how we perceive our experiences is perfect. Our lives are not only what we experience, but even more importantly how we perceive those experiences. We are all a bit egocentric and believe our perceptions to be the real ones. Once we understand it is only our experience based upon our perceptions, it makes it so much easier to emphasize with others, even when we differ. In crisis management, we do not respond based upon the actual incident, but upon the perception the incident may have caused others. Some perceive a Mx as mutilation, so imagine their reaction to a Mx while others may view it as an effective treatment. I do believe posters here are trying to understand each other’s experiences but also trying to indicate how and why we also have differing experiences, even when the actual incidents may almost be identical. To support the other, we can only be effective coming from their place. But it is always helpful to also identify uniqueness so we can be open to others’ experiences and perceptions. That’s what will eventually bring us all together.
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Bessie; thanks for your comments, I agree with you on some points.
I have thankfully had two fantastic doctors. My radiation oncologist and my current surgeon. My original surgeon was ok - not bad, sometimes great but sometimes awful. When I was first going through bc treatment my RO was the only person involved in my care who was always kind, easy to talk to, respectful of my concerns and trustworthy. During my recurrence he was the same. I trust him and like him - the only oncologist who treats people as human beings not science experiments - no arrogance, no nastiness.. My new surgeon is nice to deal with. My GP is wonderful.
I've had incredibly bad experiences with MO's, breast care nurses, chemo nurses, receptionists, and a psycho oncologist. What I've talked about above is the tip of the iceberg. I had a friend, Karen, (a woman I met during chemotherapy) who died from chemotherapy - her bc spread to her liver but she died from the chemo drugs. She told me a few times about when she was at a hospital for something to do with her initial chemotherapy - the nurse was being horrible to her, physically and mentally. She began to cry. The nurses said sarcastically “oh look I've made her cry". Karen was told by a particularly arrogant dr that she was too young to have bc (and dismissed her concerns, and didn't refer her for tests) - after she initially went to see him regarding her concerns about some lumps. She returned to him about 3 months later as she was still worried, and was to discover she had bc. Went through absolute hell, and was killed by MO drugs before the cancer got her.
I witnessed appalling things happen to my dad by MO's, and to a lesser extent, a surgeon and a cancer nurse.
I disagree that these things aren't intentional. The people I'm referring to make money from people with cancer. They have little to no compassion. They tell lies, deny everything if they're called on their behaviour and are quite arrogant. I truely do not believe they care.As I mentioned, I submitted a complaint about the latest asshole MO I had the misfortune to have to see. This man was an arrogant pig who was rude, sarcastic and intentionally blocked me from a treatment option as he doesn't like women who refuse tamoxifen - just like the one I saw 9 years previously. These men expect compliance. They don't react nicely to anyone who says no to them. In his response to my complaint he excused his behaviour by saying I interrupted him and he did not tell my I couldn't have ovarian suppression without tamoxifen. I'd misunderstood him. I did not interrupt him. He did say I couldn't have os without tamoxifen. The response to a complaint? Lie about what happened and deny everything. A friend told me that a couple she knows consulted this MO and said they found him to be quite arrogant and rude. Yet here he is, subjecting people with cancer to more stress by the way he treats them. There must be a special kind of cancer coming his way in the future that will cause him immense suffering. I wish that on all of them.
I complained about what happened to my dad when he was told to turn up for a platelet transfusion that hadn't been organised .. what do you think the response to that was? Lies and denial of blame. After he died one MO admitted fault, Things that happened to dad in other ways were terrible too - but I cannot get into it all here. Needless to say, I could, and will, write a book about it all. What I've experienced, witnessed and know about from others is extensive and shocking and I'm not prepared to keep their secrets for them.
During October I spoke out, on Facebook, against a local charity fundraising by sexualising bc. The reaction? Delete my comments and block me from commenting. I'm mentioning that as another example of what I'm talking about - we're censored if we step out of line. If we try to speak up we're told we're not being cheerful enough and ought to comply with an industry full of corruption and deceit. No one should have experienced what I've experienced. I know there are some good people out there, but I do believe the bad ones outnumber them. I agree that they're forgetting to listen to and treat a human being.
But what's happened to me is quite bad and I know that I'm not alone - more people need to start speaking up. Why protect these people and by doing so let them hurt everyone they deal with? The cancer equivalent of the long overdue “me too" movement needs to begin
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rubyred,
I know your experiences have been dreadful and that may not be a strong enough word. However, your experiences are yours, as well as the anecdotal experiences of friends and family, which are equally horrendous. I think the point that some of us have tried to make is that your experiences are not universal and that is why our “lenses" are colored by what we or close family and friends have experienced. That's all many of us are saying. Stating that we had providers who were compassionate, caring and upfront about all aspects of our treatment doesn't diminish the horrors you or others have experienced in any way, shape or form. Interestingly, in terms of providers making money off of our treatments, I belong to an all inclusive HMO. All care providers from physicians to custodial staff are salaried. They have nothing to gain from pushing a certain drug or treatment. What's really ironic here is that some people actually don't like this! They feel that every doctors visit should conclude with prescriptions and/or tests of some sort! The HMO places a great emphasis on wellness and encourages individuals to take an active part in their health. They offer a multitude of classes to members as well as weekly farmer's markets on many of their campuses. Being human, they are not perfect (witness my collapsed lung and 3 chest tube insertions!), and I've had my moments (switched mo's very early on as I knew that I could not work with original mo) but am very happy with my care and overall outcome (8+ years at stage IV with no progression since initial tx. Not typical, I understand
So yes, folks have had bad experiences but deciding that “they" are all bad, negligent or intentionally cruel is just not a valid observation regardless of how true it may be for you based on personal experiences. All of our experiences are valid in the context of our own lives. May you have a very good New Year.
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rubyred, you make a very fair point. I'd like to believe that no one in the medical community would be intentionally cruel to a cancer patient, or any patient, but we only have to read or listen to the news for a few minutes to realize that some humans are capable of incredible cruelty. Unfortunately, some of these cruel people undoubtably work in the medical community and work with patients. Fortunately, I believe that they are the rarity and not the norm. I certainly hope that is the case.
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exbm - I agree. I guess how I feel is not only based on my experiences but also my observations. I don’t believe it’s ethical to ask people to take medication that is proven ineffective yet ruins quality of life and causes further health issues. Chemotherapy is a treatment from the dark ages. It almost never works but almost always causes immense suffering. I was told hormone therapy would offer me a 2-3% benefit. So that actually means it’s got a 97-98% failure rate. Yet I should have agreed to take it for almost no benefit in the long term yet live with horrible side effects including the high chance of broken bones. When I say no, I’m treated badly?! I’ve read where women have suffered major health problems that obviously are caused by the drugs - but their MO denies it and “won’t allow them” to stop taking them. Other specialists told them the drug was definitely to blame.
I can’t get my head around how a good dr can also do this to people. Are these good drs disclosing all potential complications and how QOL would be affected? Are they admitting that their drugs have caused other forms of cancer or death? I doubt it. Will they be on your side then?Similar to my point about the pinkwashing industry - we can do as we please cause we’re “helping”. What if in your efforts to help you’re harming? Turning a deadly ugly cancer pink and using sexy words and images to get attention is wrong. It creates false messages and ideas about bc that are not the reality. This angers most of us and suggests what we’ve experienced is pretty and sexy. We can’t speak out about this or we’re branded not cheerful and compliant enough!? We’re supposed to shut up and allow anything to take place otherwise we’re the problem? No! Things are horribly wrong when cancer is being sexualised and glamorised regardless of what your motives are.
If you’re exploiting workers, underpaying them and forcing them to work under terrible conditions allowing sexual harassment and abuse, can this be excused because you’re donating most of the profits to charity?
What’s right needs to be made the number one priority. Always
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rubyred, you are confusing absolute risk with relative risk.
If you were told that hormone therapy would offer you a 2%-3% benefit, that does not mean that "it's got a 97%-98% failure rate". What it means is that if after all other treatments your risk of mets was approx. 9%-10%, hormone therapy would be able to reduce this risk by 2%-3%. This absolute metastatic risk reduction benefit is unique to you and your diagnosis - it is calculated by taking your absolute metastatic risk and applying the known relative benefit of hormone therapy. The relative benefit of hormone therapy has been proven in many research studies. Hormone therapy has been shown to reduce metastatic risk by one third, and local recurrence risk by 50%.
As for those who do not benefit, this does not mean that hormone therapy failed. Hormone therapy was never presented as a certain cure, a treatment that would benefit 100% of patients who take it. No, it has always been understood that hormone therapy reduces the risk of recurrence but does not eliminate that risk. Therefore some patients will benefit, and others will not.
As for chemo, to say "it almost never works" is insulting to all the patients who are alive today because of chemo. For relatively low risk patients, it's true that chemo provides little benefit, particularly when assessed against the risks and side effects, and for this reason chemo is usually not recommended for these patients. But as with hormone therapy, the absolute benefit of chemo for someone who has an aggressive cancer and faces a high risk of mets can be very significant. Take a look at this chart from Genomic Health, the makers of the Oncotype test. I have highlighted in red the 10-year metastatic risk associated with an Oncotype score of 45. Without chemo, the risk of mets is 27%. With chemo, the risk of mets is 10%. Considering the rate of mortality associated with a diagnosis of mets, I'd say that this is a pretty significant benefit.
We all have our own experiences, but the facts are the facts.
As for what doctors tell patients, I know from my own experience that the two MOs I have dealt with over the years have both been very clear about the risks from hormone therapy, including discussion about DVTs, heart health impact, etc.. I realize that I might be lucky to have doctors who are this forthcoming, but I doubt that my doctors are that unique.
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rubyred,
Do you have any stats or studies to support your statement that chemo almost never works? I ask because even at stage IV, I have never had chemo so probably know less about it than most stage IV patients. I have known many folks over the years, both before and after my own dx, who had chemo and seem to be doing well. I have however, been on all of the Aromatase inhibitors and credit them for 8 years of progression free stage IV life. Actually, I have no empirical evidence to support that claim, but since that’s been my only tx, other than rads to my bone met, so I’ll go with it. Yes, each and everyone of the AI’s has caused me bone and joint pain. I manage with Alleve during the day and cannabis in the evening. Not ideal by any means but despite that I still lead a fairly normal life and most importantly, I am alive!
I believe that if my doctors had better treatments to offer they would, but until such time as they do, they have to work with what exists. I guess I have been lucky in that each and every one of my providers have been completely transparent about the ramifications of every treatment. What alternatives do they have? What would you like them to do, in terms of treatment? So yes, my doctors have indeed been good doctors doing the best they can with what they have. I have also never experienced intentional cruelty, so again, I think our perspectives are very different based on our individual experiences. This doesn’t diminish your experience but it’s what creates different perspectives. As to whether they will admit that bc tx can cause other forms of cancer or death, yes, I think they would since all the info I’ve received about my treatments has been transparent and honest. Yup, I even knew that port installation could cause a lung collapse 1% of the time. Lucky me to be a 1%’er 🥺. There’s a very long story about why I have a port but never had chemo and I still have the darn thing!
Not into the pink stuff either. I think those who know me finally know better than to give me any breast cancer pink ribbon stuff! “Save the ta-tas“ was a breaking point for me
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Beesie,
I read your post after I made my previous post. Thank you so much for that info. Facts work much better than anecdotal evidence for me. As someone on this forum once stated, the plural of anecdote is not data
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Beesie, I asked my MO why she would be seeing me less once I reached five years because isn’t it true that ER+Her- is more likely to recur after five years? She said the statistics are skewed because of the number of women with ER neg or MBC are more likely to die in the first five years. Would you say that is a fair and accurate answer? She told me I should be happy I was over the two year “hump”. She seemed to assume that I wasn’t happy simply because I asked the question.
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marijen, I don't want to take this thread off topic. See my post of November 11th here: https://community.breastcancer.org/forum/105/topics/812929?page=65
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exbrnxgrl, funny you should say no one is asking me to stop discussing my experiences. I was specifically asked not to make derogatory comments about my healthcare providers on a different thread.
I get it. Your experiences were overall good. Mine weren't.
You asked if you should contact my old providers and speak out against what was done to me. I rather think you said that in sarcasm, but my, it would give those cruel people the biggest surprise of their lives to know their terrible behavior was weighed and found wanting.
I never want to restrict freedom of speech, but also want to point out I almost never go on the many, many positive and inspiring cancer threads on BCO and put my negative experiences on there.
So it seems rather strange how many people show up here to make sure a positive spin is put on a thread with a very negative title.
This thread is my safe space to vent about all the harms done to me. I don't expect anyone to fix it. Really I don't. I also don't get why I am expected to be either quiet, or positive about any of it. Look at my thread's title. It shows my bias, if you will. I don't anticipate a positive epiphany about the bc industry and my medical providers any time soon. I still experience new, completely messed up problems related to "treatment " that I wasn't warned could occur. It gets old. It really does.
This thread is a reality check for the many people who happen on by, because it shows the worst that can happen, and gives women a way to open difficult conversations with their healthcare providers so they can avoid some of the worst of my damages.
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Sarcasm is not my thing. I hope you find peace in the new year and I will bow out of this thread.*
*edited for omission of critical words. Mea culpa.
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