Newly Diagnosed

Kat09

Hi, I was diagnosed with an aggressive stage 3 BC on Dec 20th by mammogram, ultrasound and core biopsy's. I thought it was a cyst, as it was hard and painful ( similar to a mastitis feel). The following day I had CT and Bone scans that showed it to be a localised cancer, thankfully. As the tumour is quite large 5-6cm I have started AC Chemo to shrink it , followed by Taxol and Herceptin. My chemo course is to run over 6 months prior to surgery ( lumpectomy or mastectomy depending ) I have had a port inserted and have found this to be my bug bear as movement has been restricted by bruising etc but after 2 weeks it is becoming much less of an issue and I'm finding that my arm has almost returned to normal. Other than tiredness I have had no other real side effects from the 1st treatment which I am extremely thankful for. My oncologist suggested that I use Cold caps with my treatments, I would be really interested to hear from any of you that have had any experience with them and any tips you may have. It is still very surreal knowing that I have cancer and that the next 10-15 months hold a huge amount of unknowns.

Ann-Marie

Hi @Kat09 I wanted to just share this link with you - scalp cooling. You will find posts from other members here that you can have a read of.

Michelle_R

Hi Kat09 and welcome to the best support site on the net.  The best thing you could have done is have the port put in - it makes life so much easier for chemo - no problems with veins.  So glad your initial CT scans were clear - such a big plus.  I hope you continue to handle chemo so well - I had 12 weekly chemos after surgery back in 2012, but my tumour was 3.5cm or they would probably have tried to shrink it first too.  I took the before-&-after meds and chemo was doable until the very last week when I became light-headed.  After surgery, chemo & rads the good news is cancer-free for almost 5 years now.  Just take things one day at a time, keep a file of all your treatments, reports and accounts (priceless later on) and be sure to get the My Journey kit from this site.  We will all be here for you.  Stay in touch with your progress. (Didn't have cold caps so can't help there!) xx  Michelle

Kat09

Hi Michelle, thanks for your welcome and your words. Today is the 1st time I have visited this site and I'm very glad that its available as I have already learned so much and found it very reassuring to know you are all there. I know each of our stories and treatments vary but it is great knowing we have a place to share our experiences. So glad to hear that you are nearly at the 5 year mark. I've been through cancer treatment with my Mum, 3 times over the last 20 years and know how important that mark in time is.
My mums cancers were all primary and unrelated, she has beaten her last round just 12 months ago and is really well and enjoying life.

melclarity

Kat Welcome! Sorry to hear your story! Ive been through BC twice now 2011 and 2015, the last being 3rd stage aggressive. I did scans, u'sounds, needle biopsy, core biopsy, but none of those things confirmed my diagnosis until I had a lumpectomy. I did 4 FEC and 8 Taxol, My Oncologist didn't recommend scalp cooling taking FEC as he said it isn't effective. I have heard however and have friends that did AC used it and their hair thinned right through the top. So maybe ladies who've had AC who tried it may be helpful. My Mum also had BC at 40, my only relative and survived 26yrs. I had to have Gene testing due to recurrence and Im negative to Brca Gene, but am now 1yr post treatment and heading for mastectomy as prevention. 

There's a wealth of knowledge and experiences here, and all the ladies are wonderfully supportive. You can vent anything you want, we GET IT! every little bit of it! Keep us ahead of how you go. Hugs Melinda xo

Kat09

Hi Mel,
It must've been tough fighting it for a 2nd time and I'm really glad that you've made it through to prevention. It is great to have this forum as you said You'd guys GET IT!. I'm yet to have the genetic testing done as 1 of my mum's cancer battles was BC 20 years ago. She had a mastectomy and no further treatment was needed. The cold cap thing for me is a bit of an experiment but I guess if it works its one less adjustment I have to make. I didn't find them hard to deal with at all and the warm blankets that were wrapped around me were great.
Thanks for touching base, I look forward to hearing how things progress for you
Kat 

melclarity

Kat, my Mum also had just a Mastectomy and no further treatment at all. All the best with the scalp cooling, I used to have long blonde hair and it was tough but once it went I got used to bald super quick LOL. This is my hair now 1yr on and growing as you can see, like it never happened. We are all here so we're here whenever you want to chat. x 

dak2

Hi kat, good luck with your treatment, you will find a wealth of support and information here.  I chose to use the paxman ice cap, my first chemo session they were running 3 hrs late and quickly put the cap on, after 10-15 mins it's fine, unfortunately I lost approx 50% of my hair in week three, it just fell out in strands. I persevered with round two and found the cap fitted better and my hair stopped falling out.   Round three and the nurse tried a different size cap, previously had the small size which left a pocket behind my fringe and at the nape where I lost most of my hair, this time she used a medium cap which was too big but she also put on the small cap over top of the medium one, boy did I freeze on that round but it definitely worked as I now have baby hair regrowth which is fantastic.   One more chemo round on Monday and I'm finished.  Definitely try the ice cap but make sure it fits snug on your head even if it means using two caps on top of one another, it worked for me. Let us know how you get on.  Cheers

Kat09

Thanks Dak2, I bet you're excited about your hair regrrowth and also getting to the end of your Chemo!.I appreciate you letting me know how things went for you. It's strange even getting used to the not washing your hair as regularly or styling it the way you're used to. Although it does have benefits as I do get ready in the mornings alot more quickly now

dak2

http://www.ebay.com.au/itm/Women-Boho-Bohemian-Black-Red-flower-Cross-Bandana-Hair-band-Headband-Wrap-Scarf-/252396558975?hash=item3ac401da7f:g:mkgAAOSwQSZXPtMG

I shedded a lot of hair but managed to keep my fringe, sides and a lot of back hair, but founded I needed something to cover my bald spots, found similar trendy boho bandanas at a local shop $3 each and wore them a lot whilst out and about and also swimming as they weren't hot to wear, hopefully you won't need them but they were a god send for me.  Also found Moroccan argan oil brilliant for dull, lifeless hair and itchy scalp really good....keep smiling di

socoda

Hi Kat and welcome to the network, commiserations on joining us . You certainly sound as though you have had a very thorough education in cancer treatment via your mums experience and what an example of a survivor she is!!! Fantastic to hear that she is doing so well. You sound as though you are handling the chemo incredibly well and whilst the next 10-15 months hold uncertainty they also hold the biggest certainty in that you are going to be cancer free when you finish! Your positive attitude and being able to find the silver lining in situations is going to be an immense help in dealing with the various treatments and I'm sure that your mum will be there helping you through as much as she can. Know that we too are here for you and that it doesn't matter if you are having a fantastic day or a crap one if you need to come here to chat,vent, de-stress or yahoo we will all be here to support you in any way we can. I would suggest however that this year around October/November you sit down a write a lovely letter to the big man in red asking for a better Christmas present than you were given last year! Please come back on and let us know how you are going with your treatment, cold cap, etc. Sending you a big hug and wishing you all the best. Xx Cath

RNSW

Hi, I haven't used the cold caps when i had chemo but my friend used it recently and she did lose some but not all her hair. I had 16 rounds of chemo and honestly losing my hair was ok. But the cold cap is worth a try. When I was in hospital for my lumpectomy the lady in the bed next to me had the chemo first then surgery. The chemo reduced it by half then when we got results of our surgeries hers was great.... my lump had nearly doubled in size not good....
All the best 
Rita xo

KatyJoy

Hi Kat09, welcome, you will find so much support here. I'm sorry you have had to join. I think I understand a little of how you feel, it is so surreal and I still can't believe it. My story is a little similar to yours. I was diagnosed on 4/10/16 with invasive ductal carcinoma at 42yo. My tumour was 9cm. Due to the large size, I am also having chemo before surgery. I also had a port put in and it was a little tender for a few weeks but now I don't even know it's there. I am 2/3 through my chemo already and my tumour is now estimated to be 3.5cm. I didn't use cold caps so have lost my hair but I went to get a wig while I still had hair so they matched my usual style and colour, so I still look like me, which was important for my two young children. Best wishes on this journey. Big hugs to you. Kate 

Lynds

I had the cold cap twice.  My chemo is weekly for 12 weeks  (No 7 on Friday) and I think if I had been having the chemo every 3 weeks I would have succeeded with the cap.  It is very uncomfortable when first put on and feels like brain freeze (eating very cold ice cream).  After about 5-10 mins the feeling goes away and you are just uncomfortable as the cold cap is very tight.  Make sure you wear warm clothes and have plenty of the warm blankets.  One of the draw backs I found was the extra time, half an hour before treatment and one hour after treatment is finished.  Give it a go and good luck. I also got a wig but being 67 and grey decided to get a brown wig.  I love looking a bit different. 

Kat09

 Hi, I would just like to thank you all for your responses and kind words. It is sad that we have to meet this way but it is great having such a wonderful support network available. x

CatNev

Hi

I am a newly diagnosed breast cancer patient as of mid november.  I had a left mastectomy and lymph nodes removed the day after my 60th birthday in december.   Aggressive Stage 2 1/2.  I was so positive that I could handle it, and life would continue as normal after treatment.   My first mistake.  My first chemo was last wednesday, which went good, but 4 hours later I was on the lounge and beside myself.  I remember saying I don't think I can do this.  This happened so quickly.  Found out later that I was having an anxiety attack.  I have never had one before and it was terrifying.  After trip to ED and to doctors was put on Lorazipam, which has been a godsend, as had the first night sleep in nearly 5 days.  Am now on the good side of chemo, having counselling asked everyone and anyone for help at the time, but how do I control this anxiety/panic that keeps building up without having to resort to drugs.  I am trying meditation, exercise, deep breathing, peppermint tea.  My husband was been fantastic but he cant stay home all day to make sure I am ok.  During the day if i have something to do it is ok, but the nights just seem so long.  I have a long journey ahead of me, a journey I cant get off of til the end.  I appreciated any advice.