Jan 2014 New Year Newbies?!!

[Mand]

Hi everyone. My oncologist appointment has been brought forward from next week to this evening as the oncotype test result is back from the States. I'll find out for definite whether I need just radiotherapy or both radiotherapy and chemotherapy. I can't lie - I'm bricking it! I just need to know what it is now. Waiting has been so so hard as I had started preparing myself for both and then they through this test in which I did know about. I'm trying to stay brave and strong but it is hard. Mands xxx

[Guest user]

Hey Everyone,

Thanks for all the kind words, it means a lot. I used all these forums to help make my decision regarding recon (or lack of it!) and it was a massive help, so time to join in I guess!

Feeling a bit more festive today 🙂

Take care of yourselves,

Pandora x 

[Jaine]

Hi Pandora

Sorry you are in this club.  I know what you mean about hiding it well.  I can even joke about it, but sometimes especially late at night I am in bits.  I have found that people who have been through it, and are going through it, get it.  I guess this is one place where we don't have to be bright and brave, and tell each other how we really feel.

Jane

[Jolou71]

Hi Emma and welcome. Lots if virtual hand holding goes on in these forums! Also we have a private Facebook group. If you'd like to join send me a personal message and I'll sort it out. Joanna x

[minig]

Hi Jess, Sorry you find yourself here at such a young age. I've just joined the Younger Breast Cancer Network on facebook and its great. Lots of other ladies in their 30s & 40s with similar issues. xxx

[Emma76]

I hope we can all fly through it together!

[Emma76]

Hi, i'm starting chemo in january too around about the 5th or 6th, anxious but its good to read some of the other comments from women on here who are going through it.

[Lucy_BCC]

Hi PandoraFord and welcome to the BCC forums
Along with the support you have found here please also feel free to call our helpliners, they can offer you further practical and emotional support, lines open during the week 9-5 and Saturday 10-2 on 0808 800 6000

Here's a link to further support and information specific to younger women's issues which you may find helpful:

http://www.breastcancercare.org.uk/younger-women

Take care
Lucy BCC

[Guest user]

hi joanne i emailed you earlier so just updating my full name is ************ on fb..thank you x

[Jolou71]

Oh forgot to say that the reason I need your full name is so I don't accidentally add someone to the group who shouldn't be there lol. The group is fully private so nothing will appear on your timeline!!!

[Jolou71]

Hi Jess and welcome. It's such a scary time isn't it, waiting seems to go on forever. I think once you have a plan and dates things seem a bit (!?) easier it focus on. As for th fb group, please do join us! If you send me a pm I can sort it with you. Did you know there are also forums for younger women which have threads re fertility treatment. I think they're under the newly diagnosed section. There's also a fb group for younger women which is well worth a look. Joanna xx

[Guest user]

Hey, its starting to look a lot like chemo, January 2014...

Utterly terrified and hiding it exceptionally well. I was diagnosed with high grade DCIS in September and agreed to a SLNB (clear) and a month later a simple mastectomy. I refused any sort of reconstruction out of personal choice and was told this would be treatment enough. After six weeks waiting post-surgery and being told everything was looking really rather good, we finally got the histopathology results in and I came out positive for hormone receptors and highly for the HER2 protein. Chemotherapy and Herceptin was recommended and my world just fell apart. I am hopefully meeting with the oncologist this Wednesday to get the details and a planned schedule? In the meantime I am working with the fertility team at St Bart's to get preservation of embryos underway. I got engaged in July and was supposed to be planning a 2014 wedding. Sometimes the anger and bitterness at possibly losing the future I have waited so long for is so big I can't breathe. I feel awful saying such a pitiful thing. Everyone I know thinks I am the bravest, most capable person breezing through all of this.

I have never used a forum in my life, but really need to know that this sort of situation and the associated problems are being played out in a lot of lives and a lot of homes right now. I am very interested in the Facebook group as I am more au fait with the site , if you'll have me.

My name is Jess and I'm 35 xx 

[Jolou71]

Hi ladies, a few people have pm'd me about the fb group but haven't given me your full names. I'll need these so I can add you to the group. If you want to join send me a pm with your Facebook name. Thanks. Joanna x

[Guest user]

hi everyone would love to join this forum. i was diagnosed in august had a masectomy in october took a hematoma and infection in wound so delayed chemo to january ..dont have a date yet im grade 3 her2 positive. its like this is becoming an epidemic the amount of people wi bc. im scared of chemo so hopefully i can get some tips and support from you all xx take care

[Guest user]

Hi joanna ive sent you a private message ..any ladies out ther from glasgow ? xx

[minig]

Yes I'm often awake after midnight with my mind racing. But yesterday I'd been up since 4am with my toddler & spent the day doing an early 'Christmas lunch' with my family (none of whom even asked me how I was or referred to the cancer) so when I got home last night I was so shattered I slept like a baby, and luckily so did my 2 year old, for a change! xx

[minig]

Thanks Yankee! So good to hear from others who have been through it & come out the other side smiling!

[Jolou71]

Hello again everyone, gosh we are growing in numbers so quickly! I've set up the Facebook group so if anyone wants to join in, send me a personal message on here and I'll give you my full name ( not allowed to do it on here) and you can add me on Facebook, then I'll add you to the group. People seem to comment more frequently on there and more openly.
Lotsa love to you all

Joanna x

[Jaine]

Thanks Yankee.  We need to keep hearing that we can do this. It's late and I am wide awake not a good sign. Dealing with the prospect of chemo is one thing, trying to keep my head under control is something else

Jane

[Yankee]

Dear New Year Newbies

-- just had a look at all your comments.  You are where I was last year!  Had my second surgery on 27th December 2012 -- 22 mm, grade 2,  lobular tumour, 7 lymph nodes affected, ER+.

--Started chemo in February, radiotherapy in June.  I won't kid you, 2013 was not a pleasant year!  I was unlucky in that I felt rotten all the way through; but lucky in that all my treatment was able to take place on time and at full strength.

--what I really wanted to say was, as scary and totally devastating as things seem now, it will all come to an end.  And, unbelievably, some good things will come out of it.  For me they have included -- finding out that some of my "friends" were really good friends!  -- making some very important new friends through this site (28 of us who have gone through this together  correspond nearly daily on facebook have met up for lunches etc., and are having a major meet-up in Birmingham in February) -- I didn't have to shave my legs for 6 months -- I have still not had to start using deordorant again -- my eye lashes have grown back better than they were for years -- when my fingernails grew back, one that had been split for years was miraculously whole again -- my osteoarthistis didn't hurt for the whole time I was on chemo (unfortunately it does now!) -- and my hair has grown back much thicker than it has been in years and having it short has helped me get over the difficult bit that all older ladies who have had long hair (I am 69) have about whether they should keep it long or cut it short!

-- I know that each of us is different in the way that we deal with this horrible disease; but my own personal advice to you would be -- go with the flow about being "sick" when you are in treatment.  Don't try to be superwoman -- take advantage of every little bit of support that is offered to you, whether it be from family, friends, charities or the NHS.  There is a whole new wonderful life waiting for you out there once the bad times are over!!!!!

Much love to every one of you -- we are definitely sisters now!!!!!!

With love, Yankee

.

[Mand]

To those that haven't received an official welcome to the January chemo site thread - I welcome you! I see that some messages here haven't been specially targeted or responded to and I just wanted to acknowledge all those that are newcomers to this potential chemo treatment. I just wanted you all to know how I feel - the same as you so I hope my message makes you feel welcome and not alone as we always feel at times. Mands xxx

[minig]

Hi Joanna, Good luck with your surgery on tues. Sorry to hear it's been such a long slog to get this far. A private Facebook group sounds like a great idea! xx

[Mand]

Hi all, I've been a bit reluctant to join you all. I didn't think I would need chemo. One of the two things that scared the life out of me at the start of this journey! I was grade 3 with a 30mm tumour with 50mm taken during a lumpectomy on 21st nov. thought it would be just radiotherapy. Then heard it would be both radiotherapy and chemotherapy! Then heard!!!!! I would have the oncotype test. Now awaiting test results and have appointment booked 23rd December. I'm okay. Just want to know either way and it is a bummer I hear two days before Christmas. Just need to know so that I can properly try to prepare my head and body. Wishing you all well at whatever stage you are at. Mands xxx

[Jonamo]

Hi Minig, am from December Angels. Noticed you are having your treatment at Kingston Hospital, I had both my boys (ages 9 and 7) there as used to live in Kingston. Now live in Crowthorne, Berkshire about half an hour away...nice to know that some of us are quite local.
Hope all goes well.
A x

[Jonamo]

Hi Debbie, I am from the December Angels...feel free to pop in on our thread as well...there are some on there that will be starting the same time as you. One of our Angels is also on the November thread as she started at end of November. Totally up to you whether you do one thread or two!
Good luck everyone here!
A x

[Guest user]

Hi everyone i had a masectomy in october. took infection in wound think i be starting chemo january really scared ...

[Jolou71]

Hi all, hope everyone is well. I go in on Tuesday for my third and final op after 2 attempts at WLE it's mastectomy time. Then chemo starts at last. Jaine I'm from newcastle but work in Middlesbrough. I'm having chemo at the freeman.
A lot of the other monthly groups have set up private Facebook groups and share photos and posts which are totally private. I'm happy to set one up for us if anyone else wants to join in. Let me know

Love. Joanna xxxx

[Curleychris]

I was a newbie last Jan and feeling much the same as many of you.

Had my surgery 21st November followed by Chemo and Herceptin will complete in March.

You will have good days and bad but it is doable and one year on feeling hopefull for the future.

Good luck Girls and be gentle with yourselves.

[Jaine]

Good luck Debbie for Friday - you've sneaked ahead of us!  I have an appointment with the oncologist on 23rd I have found lots of support from Ladies on these forums already. So looking forward to hearing from you all soon.  If we have to do this we might as well do it together.  Anyone from the north east?  I have one grown up daughter and one grandson

Jane

[Spanishcarla]

Well, it looks as though I'm going to be the first to receive chemo, mine's next Friday 20th, so hopefully I will be able to report back to all you lovely ladies on my first treatment and yes, I'm feeling very apprehensive!  Not what I had planned for Christmas but it has to be done.  Love to you all, Debbie X

[Crimson84]

Hi I am starting chemo on the 6th jan. I am a 37 mother of one. I was diagnosed in October with IDC had lumpectomy and SLB followed by a second op to remove all my lymph nodes. Very nervous about starting chemo x

[minig]

Welcome Jackie, that's great that your new 'do' is a big hit! I've been preparing my 7 year old son for the fact I might lose my hair. He's quite excited & thinks I will look like Jessie J. Then he offered to shave his hair off too, bless him! I'm also hoping chemo won't be as bad as I've imagined. Good to know we're all in it together. xx

[minig]

Thanks Poems, that's really encouraging to hear! xx

[minig]

Hi Dilly, Welcome! I'm having mine at Kingston too so maybe see you there.  I'm hoping to meet my onc next week to get more info about my treatment plan. I also have a 2 yr old son. And I will be working through treatment as I have my own business but luckily I have a fantastic business partner who will bear the brunt when I'm not feeling up to it. Will have to play it by ear I think! xx

[Grannyjacks]

Hi. I'd like to join you lovely ladies on this thread if that's ok. I had a lumpectomy on 4th Dec and due to start Chemo in January. I had a grade 3 tumour oestrogen+ and HERS2+ which means I get the whole menu of treatment. Lymph nodes were clear. I've had a look at some of the other threads from those who have already went thru treatment and a lot of ladies are saying it wasn't as bad as they had imagined. It's great to hear that and helps to keep us positive. I'm 51 with 2 grown up children and 2 adorable grandchildren. I've had my hair cropped already and everyone is commenting I look 10 years younger. So not all bad or are they just being kind.... Look forward to getting to know you all.
Big hugs.
Jackie. xxx

[poemsgalore]

Hi, just popping in from the February Valentines (2013) to wish you all very good luck. These monthly groups are worth their weight in gold. We Vals now have our own private fb page and stay in touch every day. Most of us have met up for lunch and there will be a big reunion in February 2014 to look back on our year. We are now at the point where we are either having - or had - our first annual mammogram. You will make great friends, share all your fears and any side effects you may have, but at the end of your treatment you will feel all the richer for this experience you are about to embark on. Again, good luck, hugs and love.

poemsgalore. xx

[DillyC]

Helllooo can I also join you lovely ladies... I am due to start end dec/ beg Jan so be great to join the group.
I was diagnosed in oct with what I thought was a 2.5cm lump... DCIS with invasive grade 2 areas... following r mastectomy on nov 21st they found me to be triple neg with extensive DCIS around 10cm affecting most of the breast tissue with small areas of grade 2 IDC. So advised chemo (TC) and poss radiotherapy at later date...
Am having treatment at Kingston. .. I think we have met on th fb page Nicky..
Also have 2 yr old daughter and work part time as a nurse... are any of you working through treatment at all??

[Spanishcarla]

Nicky, sorry to throw you on name - I'm not Carla but Debbie.  I 'm just going to do a little intro so that we can all compare our diagnoses!  I'm 49 with two children.  Have Grade 3 invasive DCIS, 2 nodes affected and ER+. Started with a WLE and SNB and ended up with mastectomy and full axillary clearance. I will be starting on TAC X 6 which is a less common treatment but apparently 'gold standard' and very agressive (and seems to be favoured by my onc here in Worcestershire)!  To my fellow 'sisters', let's kick -ass! Debbie X

[minig]

Hi Carla, Sorry to hear your onc isnt being very helpful. I know nothing about chemo except that you lose your hair. But I'm sure in a few weeks time we'll all have the dubious honour of being chemo experts! xxx

[minig]

Hi Janie and Joanna, Thanks for joining me! Yes sadly I think there will be a few more ladies along before too long. I was diagnosed with grade 2 IDC ER/PR+ end of Oct after finding a small lump which the GP thought was a cyst. I had lumpectomy & SLNB 29th Nov and found out this week it's actually grade 3 so will start chemo in Jan. I'm hoping to get appointment with the oncologist for next week to find out more. I've been treated at The Marsden in Chelsea but will have my chemo at their unit at Kingston hospital as its closer to home & I dont have to faff with getting the tube etc. I am 42 and married with two little boys age 7 and 2. Well that's me anyway! Looking forward to sharing this journey with you. Nicky xxx

[Spanishcarla]

Hi Nicky, thanks for your reply - starting my chemo 20 December (lovely christmas present!) so I'm going to join your Jan 2014 newbies.  The more support I can get/offer on this forum, the better.   Chemo pre-assessment tomorrow when I should get all my questions re my treatment, answered.  Zilch info from onc, all she could say was ask the chemo nurse!  Feeling very apprehensive!

[Jaine]

Hi Me too.  I will be starting my chemo in January.  Had my surgery on 20th November with results on 3rd December.  I had been expecting just radiotherapy but I am triple negative so its chemo.  At least we will have Christmas feeling relatively well, I hope.  I am lucky in that the cancer centre is in walking distance from my house.  I know, 'lucky' is the wrong word, but at least I don't have far to travel. 

What are your biggest worries? 

[Jolou71]

Hiya Nicky,
After several false starts I'm finally due to start chemo in January. I hope I'm not tempting date by joining this thread as I'm also a November Newbie under false pretences! Having seen first hand how much support all those lovely girls are to each other, I hope we can do the same. Sadly I'm sure there will be a lot more than two if us by the new year.

Love

Joanna x

[minig]

Hi, I've been told I will be starting chemo in Jan 2014. There doesnt seem to be a January thread yet, so anyone who wants to join me on this jolly adventure, hop on here! 

ming (Nicky) xxx