Member
Posts: 4
Registered: ‎02-10-2018

Re: Recently diagnosed and terrified

Hi Juzcooper1971,

 

I did it last Friday, went into the hairdressers not knowing what I was doing. Told them I didn't know whether to have a trim or to have it cut megga short. She just made the decision for me, didn't scalp me but cut it short. Not had it this short for years. I'm going to open day at simply wigs today for a look around but my BCN phoned me Tuesday and told me that she would make me an appointment for a wig fitting with the NHS so I will get a free one too. 

 

I'm off for a chemo talk and a PICC line fitting on Tuesday and then starting Chemo on Thursday next week, scary thought but just want it over and done with now.

 

I hope everything goes ok for you next week, I am sure that you will feel so much better when you know a definate plan as to whats going to happen.

 

Take care

Helen x

Member
Posts: 27
Registered: ‎06-10-2018

Re: Recently diagnosed and terrified

Hi Juzcooper1971

Lunch was awesome, and yes I had a couple of glasses of prosecco, would have been rude not too!!My chemo induction was a bit of a farce to be honest.  Went through both options of treatment as wasn't clear which road would be going down as the screening hadn't come back for the trial.  Then they said they would'nt start with the treatment because the bone scan hadn't been done!  Anyway, after several phone calls, I finally got a date of next Tuesday for the scan. Then another call saying chemo was now starting on the 2nd and that i had been excepted to do the trial, just needed to run the randomising (Phew!)  I've ended up being drawn for the chemo only which is a little disappointing but I'm still going ahead as they seem to be having some good responses to the chemo on its own for this type of cancer.

How did you get on yesterday?

I've joined the November chemo thread so we can keep in touch on there :-)

Brows look fantastic btw. Definitely have them done if you have time before your treatment starts.  A bit on the pricey side though!  I was lucky as my gorgeous work colleagues chipped in for mine Heart

I'm going to give the cold cap ago as well tomorrow, so i'll let you know how that goes

 

Take care xxx

Member
Posts: 20
Registered: ‎11-10-2018

Re: Recently diagnosed and terrified

Hi Lisa. Hope you enjoyed your Sunday lunch and I had a couple of beverages for us on Sunday too 😉 I know what you mean about the denial bubble. I've had a couple of wobbles with anxiety over the last few days but luckily they didn't last long. Well, had a call from the hospital today to say my chemo will start next Tues now and not next Weds. Apparently they have a certain amount of time from diagnosis to the start of treatment and my final day to start is next Tues 😕 God knows what difference a day makes but all down to strict NHS guidelines. Also, after all the debating whether I would do the trial or not and finally deciding to go for it. They've told me it's highly possible I won't be doing it as they might not have all my tests back by next week and won't delay my treatment for it 😕 Got my tour and talk of the chemo ward tomorrow then go on Monday to find out what treatment I will be on. How do I join the November chemo thread as would like to keep in touch too. How did the micro blading go? xx

Hi Carol. Still feeling as bad about losing my hair as I did from the beginning 😕 However, feel a bit better knowing there are some great wigs and head scarves and beanies out there xx

Hi Kipper. How did you get on at the hairdressers? Got my friend who is a hairdresser to come to my house on Monday to crop it to a choppy bob as I have long blonde hair. I'm donating it to the Princess fund so I feel like I'm doing something positive xx

Hi Mukul51. Good luck for your chemo on Friday xx

Hi SallyG63. Glad it went well for you and hoping for the same, fingers crossed. Not sure about the cold cap but will keep it in mind xx

Hi Kateday. How are doing? Have you started your chemo? xx

Hi Blueash. Thank you for your advice xx

All the best to you all xx
Member
Posts: 35
Registered: ‎29-10-2018

Re: Recently diagnosed and terrified

Hey, I just saw your post and it was made feel days ago. How are you feeling now?

 

I dont think that losing your hair is a small price to pay. I was diagnosed three days ago and think about losing my hair and my breast are just driving me crazy. We have the right to feel sad and angry about that because they are part of us. I think that we will get to use it, but for now, dont feel bad for having those feelings.

 

Hope everything goes well to you.

Member
Posts: 4
Registered: ‎28-10-2018

Re: Recently diagnosed and terrified

Thank Lisa,

yes its 26mm, apologies .

I have had all the scan, 2 MRI,s a CT scan and PET scan.

I am due to start weekly chemo this Friday , I am very scared of the chemo.

best wishes 

xxxx

Member
Posts: 27
Registered: ‎06-10-2018

Re: Recently diagnosed and terrified

Hi Mukul51 

26cm sounds a bit on the large side, do you mean mm?  I have 2 tumors, one larger than the other and lymph node involvement, which is why I have been invited on to a trial as Triple Negative stage 3.  I have no idea at this stage what the bone scan will show (hopefully nothing they cant deal with)

Ref the trial, I would say anything like that is down to personal choice.

Wishing you all he best with your treatment

Lisa x

Member
Posts: 4
Registered: ‎28-10-2018

Re: Recently diagnosed and terrified

Hi 

I have just joined the forum today, I have been diagnosed with triple negative breast cancer, the tumer is

26 cm, with couple of rib lesion.

i see you are having bone scan, have you any lesion in your bone?I have even had the PET scan, not bone scan yet,

I am at this moment not willing to go on any trial.

best wishes

xxxx

 

 

 

 

 

 

 

 

Member
Posts: 27
Registered: ‎06-10-2018

Re: Recently diagnosed and terrified

Hi Juzcooper1971

So you opted for the trial in the end.  Be interesting to see, if excepted; and if we get the trial drug how we both get on.  Although very scarey its very exciting too.  Its all starting to feel very real now.  I think my little denial bubble is on the verge of exploding! I'm off to my parents this afternoon for a Sunday dinner feast (might be the last one I feel like in a while)  I'll raise a glass to us both for good luck and good health.

Will you be joining the November Chemo thread?  Would love to keep in touch.

Will let you know how the micro blading goes

 

xxx

 

Member
Posts: 20
Registered: ‎11-10-2018

Re: Recently diagnosed and terrified

Hi Lisa. I'very had a lovely birthday thank you. I've decided to go for the trial providing my screening shows I'm eligible which I'll find out 5th November. Regardless, I start my chemo on the 7th so there's only a couple of days between us and yes absolutely bricking it too 😕 Got my chemo induction on Weds. It wasn't too bad having the marker put in as they numb the area first as they did when they took the biopsies. Let me know how the micro blading goes as considering it myself. Also going wig shopping next week. Fingers crossed with the bone scan and hoping they're just being over cautious. Take care and keep in touch xxx
Member
Posts: 27
Registered: ‎06-10-2018

Re: Recently diagnosed and terrified

[ Edited ]

HI Juzcooper1971

So, I saw the oncologist on Tuesday and there is "something" on my sternum on my MRI. They've said not to worry as is "Unusual" (what does that mean)?  So now I have to have a bone scan (great)

I agreed to take part in the PARTNER trial, so I'm now in the screening process and should know in the next few days if i've been accepted on to the trial.  I've got my chemo induction meeting on Monday and will start the treatment on the 5th of November (bricking it now!)  I'm having my eyebrows Micro Bladed on Tuesday and wig shopping now on Friday.  Might make me feel better somewhere down the line.

How are things going with you, what decision did you make in the end with regards to your treatment route?

How was it having the markers put in, I'm having mine done on Tuesday :-)

Hope you're doing well and had a lovely birthday yesterday.

Lisa x

Member
Posts: 20
Registered: ‎11-10-2018

Re: Recently diagnosed and terrified

Hi Lisajayne11

Yes I'll be 47 this Friday 😉 Still very unsure which treatment to go down and kind of wish I wasn't given the option. I know that might sound selfish as many other ladies would be grateful for the choice. My gut instinct is telling me to go down the standard route as there are more statistics and is less intrusive. Although on the flip side it could be ground breaking treatment 😕 Please do let me know how you get on Tuesday. I'm having my marker fitted on Wednesday and need to give them my decision to get the ball rolling with my chemo. Good luck xx
Member
Posts: 27
Registered: ‎06-10-2018

Re: Recently diagnosed and terrified

[ Edited ]

Hi Juzcooper1971

I've been diagnosed pretty much the same - TNBC with lymph node involvement. I've had a blood sample taken to check for the BRCA1 and BRCA2 genes as have a family history of breast cancer but no ovarian cancer. Fingers crossed this comes back negative as that's a whole new journey!

I've also been asked to take part in the PARTNER trial, which after reading up about ive decided to do (look it up on the cancer research site if you might be intersted) If I remember correctly it's been running since 2014 and is in its second stage of three. It sounds very promising for this type of cancer.

I'm also mortified about possibly losing my hair, so I am going to try the cold cap, but understand this may not work 😕  I'm phoning a wig company tomorrow in Nottingham called Trendco to get an appointment for just in case it does fall out. They have shops up and down the country so they could be worth looking up.

I've got an oncology appointment on Tuesday to give consent for the trial, so I could update you if you like?

I'm also having some clips put in the  tumours the week after (they're markers) before the chemo starts. So all in all a very busy time.

Hope all goes well with your treatment what ever route you decide on.

Lisa x 

PS if 1971 is your DOB we are  simular in age! I am 1970 😀

Member
Posts: 612
Registered: ‎03-04-2018

Re: Recently diagnosed and terrified

Ladies,

I've just finished chemo and it wasn't very bad at all. I have managed to carry on commuting and working all the way through. It probably won't be as bad as you think. Have you considered cold capping? I've done this and kept most of my hair, albeit it's gone a bit thin but it was never that thick to start with. If you go with it the initial brain freeze is very painful for 10/15 minutes but it goes and then it's never as bad or as long with subsequent treatments.

Good luck with it all.
Member
Posts: 4
Registered: ‎02-10-2018

Re: Recently diagnosed and terrified

Hiya

I'm due to see the oncologist on Friday following on from a mastectomy I had 4 weeks back. Due to have chemo and radiotherapy. I understand what you are saying regarding hair loss I've been putting off going to the hairdressers for weeks because I don't know what to do. (My daughter has made me an appointment for Friday now) And perhaps in the grand scheme of things it should be the least of my worries. Have you seen simply wigs in Hudderfield they are mail order but are having open days the 1st and 2nd November. I've registered to go along. Take care Helen x
Member
Posts: 112
Registered: ‎08-09-2018

Re: Recently diagnosed and terrified

I have had my initial appointment with oncologist so I know what chemo and how many and I go next week to for the talk and walk of chemo ward
Bless you it is a lot to think about , but to monitored more closely is not bad , I think it will be difficult decision as I know most of us on here just wanted treatment to start xx
Member
Posts: 20
Registered: ‎11-10-2018

Re: Recently diagnosed and terrified

Thank you xx
Member
Posts: 20
Registered: ‎11-10-2018

Re: Recently diagnosed and terrified

Hiya! Just got back from my appointment with the oncologist. Got a lot of information thrown at me and have to decide by next Weds (my next apt) if I want to take part in a trial they are running for my type of cancer. He's given me a lot of stuff to read. If I agree to the trial it'll be 3/4 weeks before any treatment starts as other tests will need doing first. If I go with the standard treatment it will be 1/2 weeks. Alot to think about over the next few days. The trial has literally only been running for 3/4 months so haven't got any statistics for it but I will be monitored alot more closely and the results could be better. I am having chemo 1st to try and reduce the size of the lump, it's currently 3.5cm 😕 Hope all goes well with your oncologist appointment. He was lovely and very informative and filled me with hope xx
Member
Posts: 112
Registered: ‎08-09-2018

Re: Recently diagnosed and terrified

Hi
It’s hard the first few days after diagnosis
Like you I was diagnosed grade 3 triple negative , invasive ductal
I had lumpectomy and have intial appointment with Onocogist
Xx
Community Champion
Posts: 758
Registered: ‎26-06-2016

Re: Recently diagnosed and terrified

[ Edited ]

Hello,

 

Sorry you find yourself here but honestly it is the best place for help and support. I had chemo and used a cold cap so did not need a wig BUT if you do need one the this place is in Yorkshire: https://www.internetwigs.com/

 

When you have your start date for chemo be sure to join your monthly thread because there you will find women at the same stage as you and perhaps on the same regimen.

 

I would also recommend that you look into fasting before your chemo because it lessens the side effects. Lok at the two mice about 40 seconds into this video:

 

https://www.youtube.com/watch?v=LGafhm1cuSI

 

one is eating before and after chemo the other is only eating a few  hours after and nothing but water for 48 hours before.

Community Manager
Posts: 67
Registered: ‎03-10-2017

Re: Recently diagnosed and terrified

Hi juzcooper1971,

 

Welcome to the forum - hopefully one of our members will be along to offer their help soon. In the meantime you may find the following page on our website useful https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

 

All the best,

 

Helena at Breast Cancer Care