Advice please for this newbie

Hi there. I was diagnosed over Christmas with “invasive lobular” cancer of 5cm. Plan is for my right breast to be removed a week today and then i will have chemo and radiotherapy plus tablets after depending on hormones or something.

My consultant seems very positive about me making a full recovery but i am having a CT scan on monday just to double check it hasnt spread.

Can someone tell me if I will definitely or most likely lose my hair? Am having it cut really short tomorrow to minimise the shock when it does go and is there any point at all in the cold cap thing? I feel very positive about surviving this so I now want to understand what I can about the process. Reading the chemo threads has been really helpful. And can I say how uplifting reading the warm and supportive messages on this site - it has made things easier for me Im sure of it.

Hi speedieweedie

Welcome to the BCC forums.

You may find BCC’s resource pack helpful, it has been designed for those newly diagnosed. If you would like a copy just follow the link below to order a copy:

breastcancercare.org.uk//content.php?page_id=7514

In addition to the support you will receive here, if you feel it would help to talk to someone in confidence about your upcoming surgery or any other concerns you have, then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. They can offer you a listening ear, support and information about other services we can offer you to help you through this difficult time. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

I hope this is of some help to you.

Best wishes
Lucy

Hi speedie, just wanted to welcome you to the site…don’t have an answer (yet!) about the hair, as my chemo probably starts in a couple of weeks, but i was told by my bcn that i will definately lose my hair, so i had it cut shorter (it was halfway down my back and is now collar length), and i have decided i shan’t bother with the cold cap, partly because i understand it adds to the length of time of each appointment, also because it’s uncomfortable, but mainly because there are no guarantees it would work…so i just though ‘what the heck’ and i’ll probably just wear scarves and snuggly hats…though hubby said he’d prefer me to wear a wig ( i reckon if he wants a wig, HE can wear it!!).Best of luck with everything you will be going through, especially the op itself, i hope all goes well for you xx

Hi Speedie,
Sorry you have had to join us!
Hair loss will depend on your chemo, some of them (e.g. Taxotere) are very hard on you hair and I lost mine 2 weeks after the first round. But there are others which cause thinning rather than total loss. Your bcn should be able to advise you. It might be quite a few weeks before you start chemo as they will want you to recevoer from surgery first, so maybe no need to rush into a haircut!!

Take care

Katie

Hi Speedie,
Sorry to hear you have to go through all this stuff. Losing hair depends on what kind of chemo you have, and it also seems there are mixed results with the cold cap. I lost all my hair on FEC, practically from the first treatment, but it started to grow back on taxotere, although I know some people lose thier hair on taxotere! I brought a wig straight away, and also lots of lovely turban-type hats from a website in America. I found the wig too hot to wear (lost my hair in the summer), and by October I had a great blond crop. The good news is that my hair grew back thick, fast and curly, which was amazing as I had always had poker straight hair!! I have vowed never to have it cut again, unless I have to go through the dreaded treatment again.
All the best
Jax

Hi, just to back up what Jax has said, it seems to vary from person to person and depend on the type of chemo. I had FEC and Taxotere and used the cold cap and my experience was that I held on to quite a lot of hair and it wasn’t until after the forth session that I felt it had thinned so much that I needed to take it off, my boyfriend gave me a mohican for a giggle. I wore hats to cover the patchiness, I bought a wig but it’s still in the kitchen cupboard to this day! It’s about a month since my last chemo and I have about 1cm of hair.

It sounds like you’ve got a really good handle things :), be kind to yourself, do what feels right that day and I found that time flew because you’ll be quite busy with one thing and another, Take care of yourself!

Hi Speedieweedie
Sorry you are here but hopefully you will be getting some positive stuff from all the ladies who comment.
I was diagnosed in Oct and have had a mastectomy, about to have the 3rd of my chemo treatment (FEC) which will be followed by radiotherapy and then some sort of tablet treatment. I have found the whole thing to be like a giant whirlwind and have often felt like everything was out of my control. Strangely though Christmas was a good time for me as it gave me other things to think about. The best thing you can do is stay positive and concentrate on what is happening to you, one thing I have discovered is that very case, no matter how similar, is different. So far I have been ok with the chemo but I am taking each day as it comes. My hair did start coming out at 3 weeks after my first treatment and I have a wig but tend to only wear it when I go out. The rest of the time I am wearing scarves or a Buff is so comfy as they have no seams, funky colours and patterns too.
I hope everything goes well for you and as jimmi says, take care of yourself.

I should have read your post first as I have just written a very similar question on my post

I am thinking of having my hair chopped off in a really short funky style so that I can used to people staring now rather than when I start chemo

Hello Speedieweedie and Newforestmum

The cold cap didn’t work for me but I was in the chemo room with several ladies who lost hardly any hair at all by using the cold cap. The one who did best told me that she also used a wide-toothed comb, washed it only twice a week and slept on a satin pillow and all these things also helped.
So it’s definitely worth a try.

Good luck
Anthi x

Hi there

I have added the link to a Breast Cancer Care publication called ‘Breast cancer and hair loss’ which some of you may find helpful to read:

breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

The booklet also contains information about our free ‘HeadStrong’ workshops which explore the many issues faced by people experiencing hair loss which may be available in an area near you, for more details and further support please contact our confidential helpline on 0808 800 6000, Monday to Friday 9am-5pm and Saturday 9am-2pm.

Best wishes
Lucy

Thankyou so much for your comments. I had quite long blonde (not naturally) hair and today had it cut off to about 1 inch and dyed a copper colour which is closer to my real colour. I was just thinking that it would give me time to get used to an ongoing transition. Whats weird for me is that my initial response was my God I have to survive this and nothing else matters then I started thinking about the reality of day to day life of living through treatment and the basic survival thing sort of fades into the background cos I know I will. Makes me feel a little shallow especially when I read some of the stories on here. My head scarves arrived today and actually they dont look that bad. Im not going to beat myself up about it though - we each need to do what we need to do to get through. Perhaps its even clinging onto the normality that existed before…

x

Hi Speedieweedie

Sorry you’re in this boat with the rest of us! These ladies all know more than me. I’m waiting for op results this week, but am very likely heading for chemo, and my doc said the hair will go. I was thinking of doing the same as you and cutting it short to minimise the shock factor. Your cut sounds great! Hang in there, and there’s nothing wrong with hanging on to normality!

Carole

Hi Speedieweedie

well done you. I am off to hairdressers tomorrow to book an appointment to have mine chopped off.

Lisa

Hi speedieweedie

Sorry you’re here, but it’s nice to hear from someone else with lobular cancer - I don’t think there’s many of us out there. I was diagnosed on 12 Dec, but my lesion is a lot smaller than yours. Surgeon wanted to do an MRI as my mammogram/ultrasound are difficult to read (I have lots of cysts). Had to wait until last Wed for MRI and I’m now waiting for the result. If it is confirmed to be just one lesion, I’ll have a lumpectomy, but it there are more, it’ll be a mastectomy. The last three weeks seem to have gone on forever. I just keep thinking that I’ll look back at this time and all the worrying and think “stupid woman, what were you worrying about?” Things are often worse in your imagination than they turn out to be in reality. Anyway, I just want to get on with it, as I suspect you do. Cutting your hair kept you in control - good for you. Mine’s quite short already, but if I need chemo, it’ll go even shorter!

Don’t know if CT scan is same sort of process as MRI, but if it is, it’s no problem. You have to keep still and it’s very noisy (think old sci-fi B-movie sound effects) - lots of buzzing, clunking etc, but ok. Mine took about 30 mins.

Good luck and hang in there.
Sal x