I have been scouring the internet looking for suggestions or therapies to improve my sad head of hair.All the websites say the same thing as the BCNA fact sheet or similar, "Remember that hair loss is temporary".I really think this is misrepresenting the situation to a percentage of women going through breast cancer treatment. Some women are told this by their oncologists, their support nurses and their families ... and then it's not true. Some don't get any hair back. Some get a small amount of thin wispy hair back in some places on their head. https://www.bcna.org.au/sites/default/files/bcna-fact-sheet-hair-loss-during-breastcancer-treatment.pdfWhy not tell women at the beginning of their treatment that this could seriously impact on their physical appearance perhaps forever. Then don't minimize their anxiety about it by telling them it's not real or it's temporary. For some it is. For some it isn't.My suggestion to oncologists and medical support practitioners is tell women the possibilities and then let them choose the treatment or not. Don't tell them it will grow back if it's a known possible side affect for hair to be partially or radically permanently affected by the treatments.Maybe BCNA could play a role in getting some real information available for women. I'm looking for therapies or treatments, anything that can help me look like a normal middle-aged woman instead of an unwell senior citizen. I haven't found anything yet and there must be other women out there like me searching for the same thing.

I suspect it's done so as not to add distress, which is understandable but nevertheless devastating if your hair does not come back in some acceptable form. I had a scare two years ago when I started losing hair 2 years after chemo. In the absence of anything else (dermatologist, lots of tests) it's either the letrozole, natural thinning with age or a combination of both on top of damage because of chemo. It's OK, I'm about the only one aware of it and it seems to have stabilised. Would still have had the chemo, but I do wonder about what research, if any, has gone into longer term impact? Some of us like to be a bit prepared. The wigs are still in the drawer though

While I see your point, I think it's wrong to keep information from patients that might affect their treatment choices. It's 16 months since I finished chemo and I'm still wearing wigs. I have some very fine hair on back and sides but so thin on top you can see my scalp. I have nothing on my high forehead but a few thin wispy bits in the middle that look silly. I cannot grow a fringe. I'm just all bare forehead and temples with fine fuzz and a few fine hairs on top. I feel old and ruined. I would desperately like to know if there is anything out there at all that can help. Do hair clinics offer anything? They are very expensive and I have no idea what to try although I am trying Rogaine and it's been two months. I will keep on with it but I have no idea whether there's value in it.

My hair took a while (9 weeks to 5 o'clock shadow stage) to start to come back after Docetaxel chemo. I researched and found, like you, that this particular chemo has resulted in permanent hair loss for some people. I was not told that this was a possible side effect of this chemo either. I was very upset and anxious by this possibility and so relieved when my hair did start to grow again. I have very thin areas and some receding hairline but have enough hair to disguise this fortunately (3 years down the track now).I don't know though, that if it was mentioned as a rare side effect, that it would have been enough to change my mind about having this particular chemo. I guess it would have depended on whether there was an alternative that gave as effective treatment for the cancer without the risk of permanent hair loss.There are rare side effects for tamoxifen that I was told about but with no alternative I accepted the risks. But I agree that we have the right to be fully informed about every possible side effect of each treatment that is recommended.I hope that you are successful in finding something that helps with your hair loss. I can very much understand how this would be affecting your life at this point. I hope there is an answer. xo

I read that some hospitals are no longer giving Docetaxol because of this possibility and are using Taxol which is said to give the same treatment effect without the possibility of permanent hair loss. I don't know if that's true or if that's just what people are saying who are involved in the Docetaxol lawsuits. It's hard to verify anything because nobody seems to have any information for me. My oncologist had nothing to offer. When I asked him what I should do now, he just shrugged and said "What about a hair clinic?" like it was nothing to do with him or the hospital.It's a strange thing having to deal with the prospect of life as a different person. I've recently returned to work and I feel terrible every day when I can't be the professional looking person that I once was. It impacts my ability to be confident and capable. I really just don't want to leave home any more. I've been brave and endured the last two years of being the 'cancer patient' but I always thought it would be finished one day and I could be me again.

I so sympathise. I am fully aware that there are lots of people for whom work was and is out of the question, but being able to walk into a meeting and be normal 'me' was important both to my well being and my recovery. A lot of people didn't know I was wearing a wig for months and wondered why on earth I had chosen to go for a greyish frizzy perm! But at least I had hair. Losing it I could handle, not getting it back would have been much harder. I'm afraid I can't advise on a hair clinic, but a dermatologist might be worth discussing the matter with.

Hair Loss is not always temporary

38 Replies

primek
Member
9 years ago
@Ro10 Paclitaxol is different from Doxetaxol andcthe weekly one means lessened side effects. My hair started growing back whilst still on treatment, much to my shock.
TonyaM
Member
9 years ago
Hi KatieT,
I had Docitaxel and it took 10 weeks before I saw any hair begin to sprout.I was beside myself and I stumbled across a group of ladies in USA on the Internet called taxotears (I think) and they had been left bald from this chemo. They were trying to get a lawsuit against the drug company.Anyway, my hair finally grew back and I was so relieved but I can understand your distress.We shouldn't have to suffer permanent baldness,it's not right.After I'd been on Tamoxifen for 4 years my hair started falling out and I freaked out and stopped it. Apparently 25% of women will suffer hair thinning but no doctor mentioned this to me.I really feel for you and hope that,in time,your hair might improve. Tonya xx
Ro10
Member
9 years ago
@KatieT just curious, is the new taxol treatment called Paclitaxel? I will be having this for 12 weeks after I finish my AC and now I'm concerned about permanent hair loss. I might talk to my oncologist next time I see him.
Afraser
Member
9 years ago
I so sympathise. I am fully aware that there are lots of people for whom work was and is out of the question, but being able to walk into a meeting and be normal 'me' was important both to my well being and my recovery. A lot of people didn't know I was wearing a wig for months and wondered why on earth I had chosen to go for a greyish frizzy perm! But at least I had hair. Losing it I could handle, not getting it back would have been much harder. I'm afraid I can't advise on a hair clinic, but a dermatologist might be worth discussing the matter with.
KatieT
Member
9 years ago
I read that some hospitals are no longer giving Docetaxol because of this possibility and are using Taxol which is said to give the same treatment effect without the possibility of permanent hair loss. I don't know if that's true or if that's just what people are saying who are involved in the Docetaxol lawsuits. It's hard to verify anything because nobody seems to have any information for me. My oncologist had nothing to offer. When I asked him what I should do now, he just shrugged and said "What about a hair clinic?" like it was nothing to do with him or the hospital.

It's a strange thing having to deal with the prospect of life as a different person. I've recently returned to work and I feel terrible every day when I can't be the professional looking person that I once was. It impacts my ability to be confident and capable. I really just don't want to leave home any more. I've been brave and endured the last two years of being the 'cancer patient' but I always thought it would be finished one day and I could be me again.
Deanne
Member
9 years ago
My hair took a while (9 weeks to 5 o'clock shadow stage) to start to come back after Docetaxel chemo. I researched and found, like you, that this particular chemo has resulted in permanent hair loss for some people.

I was not told that this was a possible side effect of this chemo either. I was very upset and anxious by this possibility and so relieved when my hair did start to grow again. I have very thin areas and some receding hairline but have enough hair to disguise this fortunately (3 years down the track now).

I don't know though, that if it was mentioned as a rare side effect, that it would have been enough to change my mind about having this particular chemo. I guess it would have depended on whether there was an alternative that gave as effective treatment for the cancer without the risk of permanent hair loss.

There are rare side effects for tamoxifen that I was told about but with no alternative I accepted the risks. But I agree that we have the right to be fully informed about every possible side effect of each treatment that is recommended.

I hope that you are successful in finding something that helps with your hair loss. I can very much understand how this would be affecting your life at this point. I hope there is an answer. xo
KatieT
Member
9 years ago
While I see your point, I think it's wrong to keep information from patients that might affect their treatment choices.

It's 16 months since I finished chemo and I'm still wearing wigs. I have some very fine hair on back and sides but so thin on top you can see my scalp. I have nothing on my high forehead but a few thin wispy bits in the middle that look silly. I cannot grow a fringe. I'm just all bare forehead and temples with fine fuzz and a few fine hairs on top. I feel old and ruined. I would desperately like to know if there is anything out there at all that can help. Do hair clinics offer anything? They are very expensive and I have no idea what to try although I am trying Rogaine and it's been two months. I will keep on with it but I have no idea whether there's value in it.
Afraser
Member
9 years ago
I suspect it's done so as not to add distress, which is understandable but nevertheless devastating if your hair does not come back in some acceptable form. I had a scare two years ago when I started losing hair 2 years after chemo. In the absence of anything else (dermatologist, lots of tests) it's either the letrozole, natural thinning with age or a combination of both on top of damage because of chemo. It's OK, I'm about the only one aware of it and it seems to have stabilised. Would still have had the chemo, but I do wonder about what research, if any, has gone into longer term impact? Some of us like to be a bit prepared. The wigs are still in the drawer though

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Hair Loss is not always temporary

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