Just started chemo

Hi my name is Noreen and I live in Swindon. In September 2010 I was diagnosed with breast cancer. As I had caught it early I had the small lump removed only to find out a week later I have a rare form of cancer (only affects 15% of breast cancer patients)called ‘lobular cancer’. They had to do another op a week later as they had to get a little more ‘clean’ tissue out. Well the results for that shocked me and the surgeon. The cancer had ‘jumped’ a 0.5mm clean tissue area from the 1st op to become a 1mm area all round the 2mm tissue they took out. Chemo was not on the cards when I was diagnosed but now I have to have chemo and started my first session last week (13.1.2011). I went for the ‘cold cap’ to protect my hair but that was nasty so have decided not to have it any more and lose my hair with dignity and wear a wig!! I have already started getting most of the side affects and am just worried about the rest. I have 5 more sessions to go, 1 every 3 weeks. I had my long hair cut short, very short and will go for my wig tomorrow (22.1.2011). It has been hard and now with the hair short I think it had just hit home. So many life changing plans and things to do.

Hi Noreen. Sorry you have had to come here. It must have been quite a shock for you. I had chemo before my surgery which I had on Monday so I’m on the home straight now. Just rads to go. All I can say is that I hope the chemo side effects are not too bad for you. The time really does go quickly although it won’t seem like it at the moment. But it seems like only last week I had my diagnosis. You will find lots of helpful advice from others on here. They can even cheer you up sometimes when you need a laugh or just when you need to rant about the unfairness of it all.
Good luck and let us know how it goes

Hi Noreen,

I’m a bit like you, insomuch as I wasn’t supposed to have chemo (just rads) originally but after today’s results from WLE & SNB it looks fairly certain I will + Herceptin (that was never mentioned originally but I now realise it would have been on the cards as soon as I was found to be HER+). Also, my margins weren’t quite clear enough so I’ve got to go back for a 2nd shot next Tuesday (25th).
You’ve also answered a question I’ve just posted on another thread - asking how soon after surgery or Onc appt did chemo actually start. If yours was Sep and your 1st session of chemo was last week, there’s a bit of a gap then?
Sorry you’ve already got some side effects but there are guys on this site who’ve been lucky & not had any sickness or anything (that’s what I’ll be hoping for), so what you’ve had might be all you’ll be getting! Helpful feedback on cold-cap - I was wondering about asking about it & will bear your comments in mind.

All the very best - Chris

Hi Noreen, I am also a lobular lady in Swindon. We have a very good support group here, send me a message if you want more details. I finished chemo in July last year. Let me know if I can help. X Tina

Hi Noreen
I had my lump removed on the 7th of December and originally was only going to have rads but due to the grade of it (3) i needed to have chemo. Like you i had my first dose on 13th Jan and i can actually say that i am feeling normal today!! ( well as normal as it goes) My se seem to be easing off now.
Also like you i had long hair and had it cut off short before chemo ( and i cried)…
I dont seem to be loosing any hair at the moment but my head is very itchy…
Hope your se get easier, hang in there and keep posting,
Take care
Kaz x

Hi Noreen, big hugs xxxx

My story is quite similar; dx Sept 2010, originally just(!) WLE and rads but when they operated, discovered invasive lobular cancer, grade 3. I’m now half way through chemo (3xFEC, 3xTAX) and due for my next one tomorrow.
Everyone’s experience of chemo is different and I’ve found that even each session can have different effects but I think that I’ve been lucky, for example, I had dreadful nausea but no problems (yet) with mouth or tasting things (my appetite is extremely healthy!) A lot of tiredness but I’ve been going into work (I’m part time) so it hasn’t been too bad - but I may be eating my words after tomorrow…
The hair loss I found really upsetting but now really love my wig and actually prefer it to my real hair! I will have to have a mastectomy after chemo and this was the bit I found most difficult to accept - it felt that since the original dx things just kept getting worse and worse. It is life changing and something that none of us wanted to happen but in my case, it has made me appreciate a lot of things eg my husband (who can be a right idiot!) has turned out to be a star, friends have been fantastic and I’ve realised, finally at the grand old age of 48 that people do actually care about me. And this site is wonderful, there is so much support when you need it most.

Take care and hope you start to come to terms with it all

Hi Noreen,

I’ve got invasive lobular too. I had a mx in November and before the surgery there was no talk about me having chemo, just rads but when the lab results came back that changed things. Not only was the size of the cancer much bigger, it was also in several of my lymph nodes so at that point chemo really was essential. I had my first treatment on 23rd Dec and that was 6 weeks post op but there were other patients in the unit last week when I had #2, who had surgery before me and were only just starting chemo. It’s different for every patient, for instance I’m the only bc patient in the unit at the mo who is having 4AC + 4 TAX.

Like you I also had very long hair and I cried when it was cut off as I felt like my identity went with it. I am so glad that I got my wigs sorted so that when I go out I feel that I still look like me! :slight_smile:

I hate the fact that I’ve had a mastectomy if I am honest but I am also hugely grateful for the fact that having one has helped save my life. Having any sort of cancer is very scary and it really does change one’s outlook on life and how you live it. Somehow you find a way of dealing with it and mine has been to get through it in tiny steps and focus on each individual part of the treatment.

Nymeria xx

Just a little note for those with long hair who might be distressed at losing it, you might find some comfort from donating your hair to a charity that uses it to make wigs for children in the UK with alopecia. It’s called Little Princess Trust, and its website is littleprincesses.org.uk. I know of at least one person with long hair who’s donated her long plait to this deserving charity, and if I have to have chemo (if I EVER get my results!) I will be doing the same, as will my darling daughter who has said she’ll raise money for BCC by doing a head-shave and will give her lovely hair to the charity too.

It’s so distressing, but I think having the chance to stick a middle finger up at cancer and do something positive with the hair that you’re not allowed to keep makes it a tiny bit less pointless.

Just a thought. I’m not connected with the charity in any way, I just thought it was such a lovely idea.


Thanks for posting the link ChoccieMuffin.

I wish I’d known about the charity before I had my hair cut as I would definitely have donated it to such a good cause.

I hope you get your results soon!

Nymeria x

hi noreen,
sorry you are having so many side effects, I had my first chemo on the 18th of jan, I had two days of really bad sickness, and feel very tired but so far that is all so Im feeling lucky. Did you get your wig? yes I know what you mean about hitting home when you had your hair cut, I too had my hair cut v.short in preparation for when it goes, I have my wig on in my picture, I have had it a week now and I feel a bit self concious still but I hope that will go. The main thing to remember is that the chemo is working on our breast cancer and hopefully shrinking it. take care xxxxxxxx hugs for all that need them xxxxx

hi kazza
I have a very itchy scalp too, maybe a side effect I dont know xxxxx hugs xxxxxx

hi kazza
Did you have the ice cap? I did, just wondered if you had it too as my head is itching but no hair loss as yet xxxxxxxxxxx

I do have to have chemo, so long hair booked for the chop on Monday. Quite looking forward to having a few weeks of a proper hairstyle rather than a plait (got to recover from surgery before chemo) so I’m toying with the idea of the cold cap. Still reckon a serious haircut is the way to go anyway, as I think people do lose a bit even if the cold cap works, and it’d be better to just have lots of short hairs falling out rather than loads of very long ones (mine is down past my bra strap).

littleprincesses.org.uk will be getting my donation.

hi chocciemuffin,
I used the cold cap on my 1st chemo on teh 18th of jan, if you are going to try it here is what I found, the first ten minutes of wearing the cold cap I couldnt concentrate as the coldness gave me a bad ice cream headache, but then my head just went numb and I didnt feel it on, so if you can persevere the first ten minutes you should hopefully find it ok. please let me know how you get on xx hugs xx

It is certainly good to see one having a newest hairstyle. But your condition is different, it would be better if you have shorter hair than a longer one. Do not bother too much about your hair, that’s normal.

I agree about the hair cut because like many of you I had very long hair. There was no way I wanted waist length hair falling out, so I went and had it chopped a couple of weeks prior to starting chemo.

One thing I would recommend is getting a wig before it starts to fall out, whether you want something similar to long hair or something like the new style. Firstly it gives the wig consultant a better idea of matching a colour for you and secondly once your hair is gone you can end up buying any old thing out of panic. My wig consultant, who is wonderful, said that it’s psychologically much better to be prepared in advance and speaking from experience I can’t help but agree with her.

I’ve found that wearing a wig cap helps a lot when it comes to reducing the itchiness of wearing a wig. Plus I only wear one when I’m going out and wearing beanies, hats and scarves at home.

Hi pooki
No I did not have the cold cap i wasn,t too sure about it after reading different views on it. My head is still itching and has now started to come out a little. :frowning:
Hope you are doing ok
Kaz xxx hugs xxx

day 12 and no hair loss yetxx