• How would you feel if...hair loss has been high in your list of questions...if you asked REPEATEDLY about chemo and were told no issue and..

    Asked by 2943 on Sunday, March 17, 2019

    How would you feel if...hair loss has been high in your list of questions...if you asked REPEATEDLY about chemo and were told no issue and..

    I am seeing a psychologist and dermatologist for this. I want him to not disregard this for someone else. Thinking of putting it in writing with documentation and handing it to him next appt. What would you do? Changing drs. Is not an option

    35 Answers from the Community

    35 answers
    • 2943's Avatar
      2943

      What did not show is I have lost 75% of my hair and now know that cold cap may have prevented and was available.. I even asked on that and told no issue.

      4 months ago
    • po18guy's Avatar
      po18guy

      From my standpoint, it was loss of hair (several times) or loss of life (permanent). By contrast, it was not an issue. Cold caps may not help in all circumstances.

      1. Wigs
      2. Scarves
      3. Flair hair visors
      4. Hoodies
      5. Unlimited variety of hats

      4 months ago
    • 2943's Avatar
      2943

      It was and is an issue. BUT a guy may look at hair loss differently. This has been a major issue thru 3 different cancers. I understand the loss of hair versus life. That is not part of this question. My ? Is I repeatedly asked, they did NOT give accurate answers or allow me to at least TRY to address this. Statistics show up to 70% chance with cold therapy. How do I move forward with this Oncologist in educating him?

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      2943, it is impossible to know how someone will react to chemotherapy. I was informed I would lose my hair. I rushed out and bought a wig before I started treatment. But, I was one of those people who did not lose their hair. My doctor said about 10% wouldn't on the treatment I got.

      Just because I didn't lose my hair doesn't mean my hair stayed lovely. (It's never truly been lovely in my lifetime). Apparently, the chemo burned it from the inside out so I had frizzy, hideous, uncontrollable hair for a long time. I also have thin, baby fine hair so I have worn it pretty short for most of my life ... I kept having the frizz cut off but it took a long, long time for it to finally get back to being soft and (somewhat) controllable again.

      I lost my eyebrows and they've never come back. My eyelashes aren't as thick either.

      At any rate, I'm sorry you're so irritated or angry at your medical team and that changing away from doctors who you feel didn't give you the correct information isn't an option. I don't love my hair enough to spend much time worrying over it, but I know some women do feel defined by their hair. (Maybe I would have, too, if God had given me beautiful hair to start with ... but He didn't.)

      It sounds like you've done quite a lot of research - after the fact, I guess. Do those treated with whatever drug you received typically lose their hair?

      I had no idea cold caps had been deemed so effective. That's awesome. I wonder, though, why so many are still losing their hair if cold caps work so well?

      4 months ago
    • 2943's Avatar
      2943

      Cold cap and the different varieties are not available everywhere, cost, and extra time. My hospital has it and insurance probably would have covered or I would have. My hair has always been significant in my ‘body image’..thick, long, etc. my irritation is in not being listened to when I so blatantly stated an extremely important issue. I want others to be told the truth if they ask. I had a right to that information. I am extremely well read but my cancer was moving and changing rapidly. I ‘assumed’ I was getting straight info. Will not make that mistake again. Really asking how to nicely say to give patients this info if wanted nicely.

      4 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      How would I feel? I would feel lied to and my confidence in my doctor damaged. I think you should write that letter and hand it to him. To say nothing , solves nothing . This has affected you deeply, he needs to know that. A doctor should answer any questions posed to him by his patient , openly and honestly. Your note will serve a duel purpose: make your doctor aware of the emotional pain he has caused you thus perhaps changing his response to the next lady who asks about hair loss and the letter will be a cathartic release for you

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I personally think accusing the doctor of lying will do little except destroy what relationship you might have with him. I do wonder if there is any kind of trust or relationship there though...

      If I felt like a doctor deliberately lied to me, about anything, but especially something as important to me as I let him know my hair was to me, I would have no more faith in that doctor. I would be seeking another, who I felt I could trust better.

      If I can't trust him to give me his honest, educated opinion about hair loss, then how do I trust him to know what/how to treat the cancer that is trying to take my life?

      Accusing someone, especially your doctor who should be a trusted member of the medical team, of outright lying is a pretty significant charge.

      I don't think a scathing letter will help change things for the better for anyone. I think a calm conversation about what you have learned about cold caps if you can have a calm conversation with him, might help educate him. You might also consider mentioning what you have learned to your chemo nurses. I think they often mention the idea of cold caps and other potential aids to patients; at least at my medical facility, they do.

      You might take along some documented research showing that the drugs you receive do often cause hair loss and documented research that shows cold caps often prevent that hair loss to give to him during the conversation.

      4 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      @LiveWithCancer, no one said the doctor lied. I said, that is how I, as a patient would feel if he answered, when I specifically asked about hair loss, not to worry about it or it is not an issue Clearly it was. By not addressing a patient’s concerns about hair loss and sluffing it off he did a disservice intentionally or not. Whether 2943 presents him with the letter, writing it all down helps. I agree the next appointment should not be confrontational in nature but as a patient openly sharing and voicing her concerns and disappointments over her medical treatment. The decision to give him the letter is hers to make.

      4 months ago
    • 2943's Avatar
      2943

      Lynne-I-am...you follow where I am. And Live with Cancer...it is so the next person doesn’t have to deal with losing 75% of their hair TOTALLY unexpectantly. I like this man but their was a mistake. I thought a letter with the documentation would be less confrontational and educational.
      Thank you for your thoughts.

      4 months ago
    • Shoeless' Avatar
      Shoeless

      Seriously?? Everyone knows there's a chance of losing your hair with chemo. When I lost mine, my response was ~ kewl, if it really upsets me I can get a wig or 20. I can have any hair color, length, or style I like. I can change it daily. But I'm still alive, so....quitcherbitchin.

      4 months ago
    • BugsBunny's Avatar
      BugsBunny

      This is the reason that when you pick up a medicine of any type, there are a list of side effects that is three sheets long, and when you see an ad on TV for a new drug there will be 30 seconds of information about the drug and what it's supposed to treat, and 2 minutes worth of warnings and side effects. We have to assume that we are going to get some of them, it's a crap shoot most of the time as to which one we will get, if we will, and how bad it will be.

      If they told you specifically that your hair wouldn't fall out as a fact. Then they were in the wrong. I am surprised that they made such a statement since most doctor's offices have trained everyone to never make any statements of fact as to what will and won't happen. It leaves them open for liability.

      I hope it grows back quickly and better than ever!

      4 months ago
    • Paperpusher's Avatar
      Paperpusher

      If you write a letter to you doctor it becomes part of your permanent record. I did that with one of my husband's doctors but he wasn't going to see him again. That said, a conversation with the nurses and social worker might have more impact for future patients.

      4 months ago
    • 2943's Avatar
      2943

      BugsBunny...ironically husband was with for my questions and their ‘not an issue’ answers is a well known trial attorney. Suing is not what I am after...just making the path smoother for next person. And how best to present the situation.

      Shoeless...looks like you are a male so I will take your careless disregard to my heartfelt question with that in mind. You may wish to do some research and learn ‘all chemos’ DO NOT cause hair loss. And if you think this is ‘XXX’ you are a moron.

      This was a mistake on the part of 4 different entities. I was looking for a nice way to inform they were not correct and the intense emotional toll it caused. Period!
      Thank to several who understood I am not suing, getting in anyone’s face, etc. just feel I should help others on this crazy journey with positive actions.

      4 months ago
    • cllinda's Avatar
      cllinda

      The hair loss issue during chemo is a really important thing with women. I know that when my hair fell out, I was devastated. Now every one knew I was sick. I wore hats and scarves constantly and felt like a part of my identity was gone.
      Not being told that this would happen or being ignored when questioning this is just wrong.
      Did they tell you about finger and toe nail issues, like thinning nails, nails getting loose and falling off months after chemo has ended?
      So many different cells are affected by chemo. It's basically poison used to kill cancer cells but it affects the whole person. The things we have to wanderlust to survive.

      4 months ago
    • wmsavs' Avatar
      wmsavs

      Hi 2943, thanks for your introduction of this subject. I can see and understand your position and the difficulty you may have in discussing this with your doctors. Doctors do not have all the answers and cannot be relied on for everything asked. A doctor does not have a crystal ball to determine how a drug, series of drugs or any treatment may impact their patients' lives. What they rely on is statistical possibilities for certain things happen.

      Doctors prescribe drugs because they feel the benefits outweigh the costs, side-effects, disadvantages, etc. I suggest you to consider using the word MAY as in may lose hair rather than stating a patient will lose hair. That may get the doctor's attention better than insisting it will cause the patient to lose their hair.

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      When I researched the drugs that you were on, based on your profile, I can understand why the doctor felt hair loss wouldn't be an issue. Have you found otherwise?

      4 months ago
    • 2943's Avatar
      2943

      LiveWithCancer...carboplatin 49%,Alimpta, too. Even the immunotherapy carries the issue. Cold cap therapy and my hospital has 3 different methods in infusion clinic is stated to be 50/70% effective. Had asked about that also. Very disappointe that I have this ugly daily reminder of something that perhaps could have been avoided. This road has been long enough (3 years, 3 primary cancers, 1 reoccurance) and bumpy enough without this. One does get ‘tired’ but that is why dermatology and counseling now added to the team.

      4 months ago
    • Shoeless' Avatar
      Shoeless

      2943 ~ in case you hadn't noticed, many men are vain about their hair or the lack thereof. Take a look at your POTUS. I had a very nice head of hair before chemo. Oh well. As for gender making a difference, BS. I have known several women who lost their hair to chemo, but only one who let it bother her a great deal. She was a very conceited person who refused to do chemo again when her cancer returned because she didn't want to lose her hair again. I went to her funeral. What you are calling "careless disregard", I call being realistic. My sister is bald right now and she goes anywhere she feels like, with her bald head sticking out for the world to see. She wears it like a badge of honor and dares everyone to see her and know that she is a warrior. That isn't careless, that's being real.

      4 months ago
    • 2943's Avatar
      2943

      You assume... cannot possibly wear my shoes. I hope you are more supportive to your loved ones. I believe that is part of my journey now 3 cancers, one reoccurance and still under treatment, to help, support, stand by others as they navigate the physical and emotional aspects of cancer. Guess empathy isn’t a given in your world.
      Again, thank you to everyone else for taking the time to offer ideas and support. You are the reason this site exist.

      4 months ago
    • Molly72's Avatar
      Molly72

      2943---- MOST of us here are supportive and understanding about your loss of hair, I would be devastated, so devastated that I might not want to go thru chemo. I took a small dose of chemo for Rheumatoid Arthritis, one that is also used for cancer. I got COPD because of it. Chemo is a wild card, and even the doctors don't know how one might react to it.
      I wish I had an answer to help you, could you possibly find a new doctor?

      Shoeless---- We support cancer patients here, and we expect that our support, experience, and kindness brings hope to others.
      Being realistic is important, but so is empathy. We can bitc$#@ all we want!

      4 months ago
    • 2943's Avatar
      2943

      Thanks Molly72.

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      2943, remember you asked us for our answers---

      First, I've ALSO always had very thick, manageable hair that I've received many compliments for, but I'm not too vain or conceited to wear a great wig.

      With all due respect, maybe the universe (or God?) thought you should get your priorities right---you say you value your life, but do you properly appreciate the doctor and the medical knowledge that's given you your top-notch cancer treatment?? There are so many variables that can go wrong for a cancer patient, either cutting life short or making it difficult. . ..you could end up with a colostomy, or a permanent feeding tube with no food through the mouth, or a hole in your neck for talking with a machine. . . I could go on and on. You should get up every day thinking how fortunate you are---NOT how to chastise your doctor about loss of hair.

      Oncologists are very educated scientists, not cosmetologists or psychologists. If you are interested in cosmetology, PRIORITIZE IT PROPERLY, and volunteer in the clinic to talk about related issues and/or for the American Cancer Society, etc. The ACS has a class on beauty tips for cancer patients to look their best. Possibly the clinic would appreciate written info left at the check-out desk or in a support group.

      It's supportive to remind people when they aren't being realistic with their priorities---ask your Psychologist.

      Best wishes.

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      2943,

      FYI Greg doesn't want us to name call others here on our WhatNext support group. ("moron")

      4 months ago
    • 2943's Avatar
      2943

      BarbaraBham... Pretty funny you talking about calling someone moron in response to his idiotic, unfeeling, unresponsive answer and I answering. Why would you talk about God or the universe helping me get my priorities right? That is not insulting? Personally insulting? Lack of empathy? Do you think or blame God and universe regarding your stage 4 illness? Totally separate theological discussion. I do volunteer in a multitude of areas and always am trying to make others journeys easier and showing all medical personnel respect and thanks every visit (from security to head of depts and everyone in between.). I am thankful to many who really read the question and gave me such valid, supportive responses. Just trying to make others journeys that much easier. Happy Spring

      4 months ago
    • Shoeless' Avatar
      Shoeless

      2943 ~ okay so I'm a moron and an idiot ~ boohoo ~ I'm so hurt. Listen, I don't always try to avoid real answers to real concerns. Hair? Who cares? Did you see where I said I went to a friend's funeral because she was too vain about her hair to bother staying alive? You wouldn't even want to hear what I said to her when she announced she would die before she lost her hair again. Comforting someone is one thing. Talking BS rather than speaking the truth is something else altogether. Barb had some good comments for you but rather than taking it in, you get nasty with her?? WOW!!

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      2943, I wanted to point out that overt name-calling is against our rules for any reason.

      I preceded my reply reminding you that you asked us the question, implying that you wanted an honest answer in a decent way, which is what I think I gave you. If you hadn't ASKED for our opinions, I would never have given you my opinion.

      To answer your other question, I definitely think God builds our character, but I don't believe cancer is anything God did---I've often said on this blog that I think cancer is something our bodies did due to aging or other everyday reasons, similar to other body processes.

      I have no opinion or judgment of whether you volunteer or not---I should have just explained that you could channel your energy towards you or his staff letting patients know what your oncologist didn't remember to tell you. As a scientist, he's probably focused on saving lives and curing cancer, so any more tasks for him may be in vain. You could simply tell him you were disappointed that you lost your hair, without attacking him.

      I REALLY read your question and gave you my answer, but you don't like it. Sometimes it is supportive to remind people when they aren't being realistic with their priorities.

      You might actually have fun shopping for a wig on QVC (TV).

      4 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      I understood that we were being asked for our opinions. The question said, "How would you feel ..." and then it said, "What would you do?"

      We are a very diverse group here on WhatNext. Each of us has different priorities and completely different perspectives. We've all walked different paths and experienced different traumas in our lives.

      I think if you ask for our honest opinions, which we assumed you wanted, you shouldn't respond with anger and namecalling when the opinions don't match how you feel and aren't what you wanted to hear. You can tell by the responses on this thread that we all have different priorities, perspectives, and life experiences.

      Just because some responses were not what you wanted to hear does not mean they are not valid and does not mean that the poster was not trying to be supportive. It means some people look at life and what's important and how to handle disappointments or even traumatic events different than others.

      Good luck with your doctor and I hope whatever you decide to do and however you decide to do it ends up with the results you desire.

      4 months ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      2943, I hope the responses of the community have not turned you off to asking any further questions you have in the future. All of us on the site are here to help each other. BarbarainBham is correct- we do not call each other names. We should also NEVER tell another survivor who asks for support to “ quitcherbitchen .” This particular statement would not be tolerated on some of the other sites. I understood from the get go that your main objective is to open your doctor’s eyes to the importance of possible hairloss when discussing chemo with his patients and I think that is also the perfect time to discuss the cold cap therapy so that the patient can make a decision about whether that treatment is for him/her or not. There really should be a little brochure or pamphlet about if. I knew that the particular chemo treatment Taxol would include hairloss, my onchologist told me this. However , I was not told anything about treatments that might lessen or prevent this. I never knew until chemo was in the rear view mirror anything about cold cap therapy. I probably would not have done it, but I would have appreciated being given a choice , just as I was when decideding which of three chemo treatments to have. Having been on three different survivor sites for over five years now, I know losing hair can be a big deal . I cried before my son in-law shaved my hair, not ,in my case, because of how I would look, but because this was one more thing this xxx disease was taking from me.
      I applaud your wanting to help others. Perhaps look into supplying a little pamphlet about possible alternatives to hair loss that nurses or doctors can give patients. Onchologists should be informed and educated about possible alternatives for hair loss so when a patient asks, they do not side step the issue. Patients should always be given choices when choices are available.
      I hope to see you posting in the future, helping other survivors by offer your input.

      4 months ago
    • Molly72's Avatar
      Molly72

      Honesty and reality are easily tempered by a careful use of words. Opinions as well.
      If I lost my hair, or had some other physically traumatic condition due to chemo or cancer, and asked for an opinion, I sure as heck would not expect someone to tell me to "suck it up". Not helpful, not warranted, not supportive at all.
      My opinion only!

      4 months ago
    • Shoeless' Avatar
      Shoeless

      Lynne-I-Am ~ I wasn't telling her to quitcherbichen, I was stating that that is what I told myself whenever I felt like complaining ~ you're still alive so quitcherbichen, that was me talking to me, although I must say I complained more about the fatigue and the fibromyalgia than anything else. I'm sorry my truth hurts so many people's feelings. I'll be sure to refrain from doing that again

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Shoeless, it wasn't that bad---I thought it was a joke.

      Sometimes if someone is complaining, you have to speak the truth to them to give them perspective (to help them). Anytime I even think about complaining, I immediately think "well, I'm still alive," and I know of others here who do the same. We all are so fortunate to live here and have access to the best of medicine, and also that we have cancer in this century rather than just 50 or 100 years ago. One good thing about hair loss is that wigs disguise it, and some side effects can't be remedied.

      Being overprotective doesn't help our children, and it doesn't make cancer patients strong either. We've talked before about this cancer journey making us stronger and therefore more confident that we can handle anything. ROARRRRR

      4 months ago
    • Shoeless' Avatar
      Shoeless

      Barb ~ GIST and breast cancer both? You are a true warrior.

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Shoeless, they were years apart, but my GIST has never gone into remission, so I'm supposed to take a daily chemo pill, which is hard. Lots of us here have had more than one primary. We're glad to be alive!

      4 months ago
    • BoiseB's Avatar
      BoiseB

      2943 Was your hair loss permanent? If so you should have your have your husband check it out? I have seen notice that there is a class-action suit against a certain kind of chemo that didn't warn about permanent hair loss. It may not be your Dr.'s fault. My Dr. did discuss hair loss with me. My main concern was for the plumbing which was about 60 years old and so when I began to lose my hair I immediately had my head shaved. The bad thing was the Dr. told me that when it did come back, I could no longer dye it. So now I have very short grey hair.
      What the Dr. didn't tell me was that radiation would cost me my teeth. But I am alive

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      BoiseB, QVC (TV) has a wig show on today at 3:00 p.m Central Daylight Savings Time. It also streams online at qvc.com. Today's are HairUWear, but they also carry Toni Britton.

      I LOVE wearing wigs, and it saves a lot of money at the beauty shop, too. Nobody knows mine is a wig but my family, and they've been fooled, too! They have a grey in some styles, but I buy brown with gold highlights, which is what I used to have. They're fun!

      4 months ago

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