Anyone SERIOUSLY consider refusing chemo because of hair loss?

Ive been floating around on these boards for a while now and have never heard anyone say they wont do chemo because of loss of hair. I looked at some of your previous posts and see that you are here on behalf of your mother. If I have it right she has idc and dcis? I didnt see how much idc she has and while I can guess at her age (presuming 50's to 60's) I assume she is otherwise of good health?

It really is a matter of making an educated decision based on her final pathology as to whether the chemo is absolutely necessary, somewhat necessary or more a precaution. Im a proponent for chemo in all cases, but thats just my personal preference. I do honour what others choose to do, in the hope they have made the education decision based on all facts to hand and thats right for them.

A choice of no chemo due to loss of hair in my personal opinion could be a diversion of the fear from pretty much anything else, being camoflagued in her mind. While not wanting to minimise that some women do in fact experience a terrible loss of their own selves due to the loss of hair, in the vast majority of us, if it comes down to saving their lives and being able to stay with their loved ones for longer, versus having no hair for a few months, then I doubt many would opt out of chemo.

Its more than natural to say, dammit Im not doing the chemo cause no way im losing my hair. But when push comes to shove I think most if not all would realise its more a cry of pain/shock/disbelief that BC is happening to them at all, rather than a real, objective choice of hair over life.

I apologise if advance if my post offends anyone. There could be people out there who make that choice, if so I just havent come across them and in no way want to minimise their choice or their pain. I do however wish the OP to understand that  if this subject came up by her mum saying, Im not doing chemo cause I want to keep my hair, that it could be a initial reaction to her traumatic dx of bc and not a genuine, educated or even long term decision.

On the flip side, if this is about chemo or no chemo due to your mums final pathology results, that could be an entirely different thing. Many women have chosen not to do chemo when they have borderline dx's or a profound fear of chemo and its s/e's etc. An entirely different topic with many differing points of view.

Good luck to you and your mum and I hope whatever decisions are made in the near future are ones you are both happy with.

Don't do or not do anything because of hair. Nice hair is not going to do you any good if you are lying in a coffin. Not having hair is a pain in the you know what. But there are wonderful wigs (my 'hair' never looked so good), and scarves and hats. When my hair came back it was darling, and I got a whole new look (and color) that I never would have dared try without being forced into it. It turned out to be the one good side effect of chemo for me.

No nodal involvment is good. At this stage, considering how stressed your mum is, the best thing may be to just let it go for now. A lot of us said stuff before we were ever dx'd but when push came to shove, most of us did what we were advised to do by the experts as the best way to save our lives. Who knows maybe the onc wont prescribe chemo anyway and theres no point in both of you being overly stressed just by the possibility.

Id recommend having a cancer break. Try to do things that arent involved in BC until you get the oncotype back and have another appointment with the onc to get all the information you need for an informed decision. Once you get that, theres various online sites where you can input the information and determine the % of non recurrance based on the various treatment options.(cant remember all their names at the moment but Im sure other ladies here will recall). That can help with making sure you know exactly what your options are and how much they will help. In the meantime maybe dont discuss chemo further with your mum. Take a break, celebrate that it appears to have been caught early to give plenty of options and recover from the trauma of the surgery. If you can afford it, maybe a weekend away somewhere nice.

For yourself Id say, try not to worry too much about what your mum will or wont do just yet. Once the onc creates a proper treatment plan is soon enough to really get into all of that. If its worse case and your mum has to do chemo, when faced with hair loss (which will happen) and other s/es (many of which most people dont suffer) versus loss of life and not living to see children married, grandchildren born etc, many in your mums position would change their minds.

If nothing else your mum is very very lucky to have such a loving daughter to help her during this difficult time. Please make sure you get out and live your life as much as you can during this time too.

@Linda1966,
one of those sites is Adjuvant!Online, and another is Cancermath. I use Cancermath, but got very similar results to those my oncologist showed me using Adjuvant!Online at his office.

AngelFaith, While I was researching hair loss etc., I read somewhere that 5-10% of women will fore go chemo due to the side effect of hair loss, so in answer to your question, yes. While some say losing their hair is minor in the scheme of things, many of us see it as major. It is not so much about vanity, but more about privacy, about not looking different, about not having that very public reminder.

 I used Penguin Cold Caps and kept all of my hair. My doctors had never heard of them, but were impressed, not just that they were working, but at my attitude throughout treatment. That attitude was a result of not seeing myself looking sick. www.rapunzelproject.org will donate a freezer to the facility, or many women use dry ice. As far as being too cold, they are only really cold the first few minutes, then they are fine.

You remind me of my wonderful daughters who are always incredible, but never more so than while I was going through treatment. Your Mom is overwhelmed right now, so if you think keeping her hair will convince her to do chemo, do what ever you can do to help make it happen.

Good luck!

Not wanting to hijack the thread, but Im curious, didnt you ladies who used the cold caps still get the face swollen from steroids or did the cold caps somehow reduce or remove the swelling entirely? Also curious as to whether you retained eyebrows and eyelashes or whether it was just the hair on your scalps?

Sorry if these questions are off subject a bit, but I havent met anyone who used the caps and hearing you both saying you looked normal throughout chemo has made me wonder.

I'll be starting chemo in the next few weeks, scared to death. I've had waist long hair my entire life. I love my hair! But it is only hair. I love being alive more. My hair will grow back.

I would like to try the cold caps, but that's not something I can afford at the moment, so I'm bracing myself to be bald. I'll be going the way of the wig I think.

I'm trying to convince myself the wigs can be fun. I've found one that looks pretty much the same as my own hair that I've ordered, but I also seen quite a few that look nothing like my hair that I would like to try. I've had the same hair do forever, wigs will be a chance to change it up.  

I did not have any face swelling at all.   I did lose lashes about 7 weeks post chemo but they grew back within about 2 weeks.  My brows thinned but I never lost them all. I did however lose every other hair on my body though! 

Early on my MO suggested that I consider chemo because of the size of my tumor and my relative youth (I was 51 at dx) I probably would have done chemo, but I certainly was resistant to the idea, mainly because of my hair. Like Jennie93 I had waist length hair which hadn't been cut in this century.  My oncotype score came back quite low (11) so I was able to forgo chemo.  Ironically my hair was so damaged by the radiation, stress and tamoxifen that I cut it last week.  It's an adjustment for sure, but I like the new do.

 Good luck and I hope you find peace with whatever you decide re: treatement ladies!

I cut my long hair prior to chemo and sent it to www.hatswithhair.com and had an "underhair" made from it.  It was far more comfortable than my wig but I did have to wear a ball cap or a fedora with it.  I highly recommend doing this if you would like to have a hairpiece made from your own hair.  Your insurance may cover it if you submit the receipt with a prescription from your oncologist for a "cranial prosthesis" - I did this with my wig and paid for the underhair myself because it was less expensive.  The company also has human hair and synthetic hair if your own hair is not long enough.  I considered it the best money I spent during chemo.

For my first three tx of chemo I only had steroids on the day of treatment.  I did have a UTI which required antibiotics.  I had a rash afterward (I am allergic to many antibiotics) and because they could not attribute the rash to the antibiotic, and not chemo, I had to move to the steroids before, during and after tx.  I developed the swollen face, which lasted until a month or two after my last tx.  I did not lose my brows, they just thinned, but I did lose all bottom lashes and most of the top.  This was not obvious with extra eyeliner.  They did grow back and I did not lose them again.

AngelFaith, Once you know if your Mom is doing chemo, you should get in touch with both Rapunzel and Penguin. You can email both of them. The caps can be shipped fairly quickly, but the freezer takes a little longer, maybe 2 weeks if I remember correctly. I actually postponed my chemo by a couple of weeks, to get the freezer in place. Not all chemo facilities are open to the idea of accepting a freezer - I couldn't believe it. I had to really work on my facility to get them to ok it. The legal dept. was worried about liability and blah, blah, blah. I would have gone elsewhere if they would not have accepted it. The majority of women have used dry ice though, so don't worry if you have to go that route.

The facility will probably not allow you to bring your baby in there, more for your baby's protection against the strong chemo drugs than anything else. Your Mom will have to have a helper though, surely there is someone willing to help her out (or watch your baby so you can help her) on her chemo days.

I know all of this sounds just plain overwhelming,  but it is truely is doable, and is so worth it! 

We are all happy to help you in any way we can.

I an at Taxol treatment 10/12 weekly and have NOT lost my hair because of cold caps. There are 2 ways to keep caps cold:

1. If your facility has a biomedical freezer. Penguin cold caps will give them one free.

2. My facility did not have one and did not have room for one. I am having chemo in my doctors office because it is convenient.  You have to have 2 sixty quart coolers filled with dry ice that you take with you. Caps are kept on ice and changed every half hour and worn for 3-4 hours afterwards. I did all this in the middle of the worst winter the northeast has seen recently along with a broken right wrist in a cast as I slipped snd fell on ice. If I can do it thru all this so cn you.