69807members
366826posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Yet Another Newbie - head spinning with questions

18 REPLIES 18
Member

Re: Yet Another Newbie - head spinning with questions

Have messaged you x

Member

Re: Yet Another Newbie - head spinning with questions

Ho lizzieship

I'm sorry to read of your recent diagnosis. As well as the support you receive from the other users you may find it helpful to order a copy of the BCC Resource Pack, it has been specifically designed for those people newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like a copy just follow this link:-

http://www.breastcancercare.org.uk/heal ... tionId/82/

Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.

Best wishes Sam, BCC Facilitator

Member

Re: Yet Another Newbie - head spinning with questions

Hi Anoifmaeve

I had my masectomy with reconstruction in April - my tumour was 2.8cm in size, and followed this with 3 FEC and 3 Docetaxel chemos and started radiotherapy today - 1st of 15. I am also on Herceptin, and my lymph nodes were clear. My op was at the West Suffolk Hospital in Bury St Edmunds, and my reconstruction was with an implant as my main priority was to get rid of the cancer and worry about aesthetics at a later date if needs be, but I do know that my Breast Surgeon also does private work at the BMI Hospital in Bury St Edmunds - here is the link

http://www.bmihealthcare.co.uk/consultant/consultantdetails?p_name=Jane-Aitken&p_id=49164

She is brilliant (as are the rest of the team at the West Suffolk Hospital and my GPs at School Lane Surgery in Thetford) In fact, when I had my 1st appointment at the Norfolk & Norwich hospital where I am having my radiotherapy treatment, the oncologist commented on what a good job had been done on me as regards the reconstruction.

Bury St Edmunds is in Suffolk so a bit of a hike from your neck of the woods, not the other end of the world but a recommendation nonetheless. I only had an overnight stay for my op anyway so worth investigating? See what your GP thinks

Good luck and let me know how you get on.

Member

Re: Yet Another Newbie - head spinning with questions

Hi I have been today and got my results - I have BC but three or four tiny tomours all under 10mm however due to the fact they are scattered about the left breast I am having the breast off on 7th of December and full axillary clearance, then Chemo in the new year, then herceptin then tamoxifen - don't thinkk I will need Rads as at the moment the lymph nodes do not seem to be affected at all. Will know more following surgery. I cannot belleive how relieved I am knowing the results! Anyway the doctor thinks I may have only had this 3 -4 months due to the sizes so thank goodness I went for my first routine screening, will be staying with you through this long process of healing x x

Member

Re: Yet Another Newbie - head spinning with questions

Thanks everybody for all your kind support and PMs.

I have had probs with broadband so not been able to get online for 2 days.

Got radiologist rpt of Breast MRI today. Says tumour in left breast 30mm x 27mm (as per US) nothing in right breast, but lymph node in right axilla looking suspicious. Need to take that in. Guess it means I will have to have 2 SNBs.

Like you Sheil they wouldn't give me the MRI rpt, but I have a great GP and she was able to log in and get it for me. I used the Phrase " My body, My Cancer, My treatment, My life or Death and My records" to a few people today and yesterday, didn't really change anything but made me feel a bit better.

Seeing NHS surgeon tomorrow - still have not had proper conversation with breast nurse, lucky there is so much help and info on here and other sites.

Thanks again to all who responded here and by PM,

Fiona X

Member

Re: Yet Another Newbie - head spinning with questions

Hi Fiona
Not near your area but I do/did have lobular, ER/PR+, her -, ended up with 3 spots in total, biggest was 2.2cm, was recommended a bilateral Mx but after sentinel node biopsy came back clear I decided to go with 2 WLE's. Have you had SNB surgery? With lobular its difficult for them to be precise in measurement before surgery.

I also had similar 'issues'. My situation was quite complicated and at one point when I was trying to decide on Mx or WLE they had my MRI results but said I couldn't have them for a week. Whose $&%$@ cancer is this?? Had to get my GP to drag them out of the sods. I read and read about lobular and all other aspects and decided to go against the recommendations, and although my first year's not up yet I don't regret the decision. I'm not delighted with the cosmetics of it, and plan to ask for some PS tidying up after my yearly review.

I found Susan Love's book brilliant when I was at the point you are now.

I also had the option of going private, but daughter of close friends who works in the field did say for certain situations the NHS is actually better. However, I've been quite disappointed a few times with the NHS so couldn't say one way or another.

I'm so sorry you are having to go through this so soon after losing your husband.

PM me if there's anything I can help with regarding the similar type.

S

Member

Re: Yet Another Newbie - head spinning with questions

Have just PMed you.

X

PS the helpline does have a funny ringtone, but shouldn't then go dead!

Member

Re: Yet Another Newbie - head spinning with questions

Hi Fiona

I didn't need a mx but was treated in Oxford at the Churchill; who for me were brilliant; kept me informed and let me know what would happen next etc.

BCN was lovely although on occasion we chase each others answer-phones round. Now after my active treatment she still returned my call to ask advice on how to manage some fluid buld up after my rads.

I had 2 WLE & 3 weeks rads as my bc was picked up at the earliest possible stage as DCIS.

As far as I understand it the Churchill is supposed to be a centre of excellence; perhaps ask your GP what they know about the Churchill/JR.

Best of luck; hope all goes well for you.

Lynne

Member

Re: Yet Another Newbie - head spinning with questions

Have tried to call helpline today but can't get through - funny ringtone, then goes dead. Been trying since lunchtime on and off.

Having fun and games trying to sort out next steps.

Have various issues with local NHS and Private hosp. (difficulty getting hold of MY test results - as if i am a child at school where everyone else discusses my case but i just have to wait to hear what they decide !!!.)

Probably have to have MX as tumour too big for WLE.

Local hosps can only do reconstruction with back flap and as I have a history of back and shoulder probs I don't want to risk losing shoulder/back muscle.

Everything I have found out so far was from web and sites like this.

Still have not had a discussion with breast nurse 2 weeks after diagnosis.

I find this a massive additional stress...Its my body, my cancer, my life and death, my treatment decisions.

Anyway now think I should just go to one of the london hospitals and am looking for recommendations of Surgeons who do a neat job and where both they and their staff don't exclude you from whats going on in your case.

Please if you can help PM me. I am lucky enough to have private ins through work. Also my GP is fantastic and says she will refer me to any NHS or Private Hosp I choose. However she doesn't have any firsthand knowledge outside local area.

Thanks for any info you can offer.

Fiona X

Member

Re: Yet Another Newbie - head spinning with questions

Hi Anoifmaeve

Welcome to the BCC forums. I'm sorry to read of your recent diagnosis, the first few days and weeks are always difficult when coming to terms with things and getting to grips with your treatment plans, etc.

I've given here the link to our Resource Pack for those people newly diagnosed. The pack is filled with information to help you better understand your diagnosis, test results and the various treatments available.

http://www.breastcancercare.org.uk/heal ... tionId/82/

Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.

Best wishes Sam, BCC Facilitator

Member

Re: Yet Another Newbie - head spinning with questions

It is a rotten thing to find you have Breast Cancer. You will be numb and frightened at the moment. It will get better but you have lost your helpmate and the person you need a cuddle from . Not fair and so hard. You will get there but no doubt that is not something you can imagine right now. You may need counselling because you have been through so much in the past couple of years. One step at a time, you need to regain control. To find out what is happening and when plus why. You need to find out who your local support networks are eg BCN etc.....
The friends you meet on these forums will be invaluable. If you have a twitch the Helpline is superb and you might find you want Peer Support. All these things are available to you in your time and when you need them and that might not be right now.
You are so brave ------to post here shows that. There is a light at the end of the tunnel it is just a bit dull st the moment,
Thinking of you +++
Cackles

Member

Re: Yet Another Newbie - head spinning with questions

Thanks everybody for all your kind words.

It does make a huge difference talking to people who have been/ are going through similar things.

By the way I live near Reading, does anyone know of any breast groups that meet up around Reading or even in Berkshire/ Oxfordshire.

Thanks again for sharing,

Fiona XX (the Anoif is fiona backwards cos other usernames already existed)

Member

Re: Yet Another Newbie - head spinning with questions

Hi, welcome from me too. Goodness me...so sad to learn of your husband's death.

I was diagnosed in Feb with a 2.3cm lump (surgeon thinks it was bigger), grade 3, HER2+. Had 6 mths of chemo which made the lump disappear entirely, which meant I could have a lumpectomy. About to start radiotherapy, and have just started herceptin. It's been doable for me and I've worked through all of it so far, but everyone's body is different and reacts differently.

Many good people here to talk to...
Ann x

Member

Re: Yet Another Newbie - head spinning with questions

Hi I do not often post but just wanted to say i was dx Feb 08 with lobular and had mastectomy and still here today and feeling well.

Member

Re: Yet Another Newbie - head spinning with questions

Really sorry to read about your husband passing away and then your diagnosis. It really is scary at the beginning and your head will be full of questions.I was diagnosed Nov 2009 and I am doing really well. There are a lot of amazing women who post on this site, it really is a good place to share stories and seek assurance.Sending you a big hug. Take each stage as it comes as my surgeon always said take baby steps. xxx

Member

Re: Yet Another Newbie - head spinning with questions

Hi
So sorry to hear your story. As the others have said we are not brave we have just got from day to day and found the strength and support we need. It is good that you have good friends as they will offer you the day to day support you need. Just be real. Allow yourself to feel all the emotions that you are going through.

I would echo that it would be good for you to phone the helpline. They are very good and will be able to discuss with you all your questions from a professional point of view.

You will always find much support here.
Love KatyD

Member

Re: Yet Another Newbie - head spinning with questions

Hi Ano,

We are not brave and you don't have to be. We just try to help in any way we can as all of us have been there and gone through what you are feeling at present.

I was so sad for you when reading about your husband.

Your Breast Care Nurse should be finding the time for your questions as that's what she is there for. Hopefully you will get some answers when you next see her.

I think that at this stage you need to speak to someone who is trained. Seems to me you would be better phoning the helpline here, number above. They will be able to answer lots of your questions and help you to help yourself in making decisions.

Keep in touch and let us know how you are progressing.

E

Member

Re: Yet Another Newbie - head spinning with questions

Hi there,

so sorry to hear your story. I promise you you'll find lots of support here. Non of us feel brave or strong but the truth is you'll do what you have to do and you'll find the strength from somewhere. It's so difficult in the beginning but over time it does get easier - particularly when you have decided on a plan and things start moving. It'll be 2 yrs come January since i was diagnosed and i'm still here - you'll get there too. Sending you much hugs and good thoughts.

Lynn

Member

Yet Another Newbie - head spinning with questions

Hi all,

I was dx a week ago today aged 49, and have been manic trying to gather info since then. I have read lots of posts on here and it seems a really good place to get first hand inside knowledge. But it is also very scary what many of you have been through.

So far I have had a Mammo (which showed nothing), an Ultrasound which showed a 3cm lump, and 4 core biopsies, all done the same day.
A week later i got my dx: Invasive Lobular, grade 2, ER 8/8 PR 5/8, still waiting for Her2.

I did have a previous Mammo and Ultrasound in April 2010 and I could feel the lump then but they said it was just lumpy breasts. They didn't do any biopsy or needle aspiration back then, even though I have a sister who was dxd with lobular that didn't show on mammo back in 2009 aged 42.

Its all a bit of a shock as we only buried my husband in April this year. He had a brain tumour diagnosed in 2009 aged 49. I nursed and cared for him for 15 months and it was physically and emotionally exhausting. So I still have not recovered from that. I am lucky to have good friends to help support me, though they have not had the same experiences of cancer.

My next steps are to have an MRI tomorrow, and then see the breast care nurse on Friday (she just gave me leaflets last week to read but had no time for questions).

The Surgeon said it looks like I will probably have to have full mastectomy, though there is a small possibility that they might be able to do a WLE, though it would require removal of at least half my breast, and preoperative chemo. He wants me to decide which I would prefer by the 16th Nov when I see him next.

It is so hard to take in all the possibilities and make the decisions.

I don't think I am as brave as so many of you seem to be.

Thank you all for being so willing to share and support,

XX