results

Hi there

I don’t really know where to start, my mind is all over the place. Went to get results today and thought I had prepared myself for bad news, I thought wrong.
The Dr said I have DC 3cms in the right breast. They have already had a MC meeting and decided it would be best for me to have bilateral mastectomy with tissue expansion, chemo and radiotherapy and after treatment removing my left breast and reconstruction. This is because of the affected gene I have. As soon as I heard bilateral mastectomy I just went blank and cried. All I could think is I’m only 34 and I’m single and oh god how do I tell my daughter. I have an appointment this friday to see a plastic surgeon so will try to keep an open mind until then. I need to make my desision by wednesday when I go back to see breast surgeon and get a date to start this long journey.

I feel like I’m in a big bubble, this is happening to me but its not.
Just one question… is it normal to be fine one minute and in floods of tears the next? Even in a short period like 1 hour?
Thank you for reading ladies xx

I am so sorry you have had bad news. It is absolutely normal to be all over the place with your emotions, and telling your close family is one of the hardest things.

As you said it is a long journey and it is a hard one, but you will meet some wonderful people along the way.

I am really thinking about you as you make your decision.

Lots of love and a hug,

Anne

Hi amethys

Welcome to the Breast Cancer Care forums. I am sure you will get lots of help and advice from the many informed users of this site.

You may find BCC’s resource pack helpful which has been designed for those newly diagnosed. The pack is free of charge as are all our publications. If you would like a copy just follow the link below:
breastcancercare.org.uk//content.php?page_id=7514

If you feel you need to talk to someone in confidence then please give the helpline a call, the staff here are all either breast care nurses or people who have personal experience of breast care issues. The number to call is 0808 800 6000 the lines open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I hope this is of some help to you.

Kind regards

Sam

I am very sorry to hear of your diagnosis and of the treatment that’s being proposed. I was diagnosed at 48 but I dreaded the surgery as I was well aware of the risks when I found my lump and I had no idea of what would happen. My experience was different from yours as I had segmental mastectomy (a bit cut out about a quarter) but I really didn’t want anything done, I liked my breasts as they were. I have had relationships since and it hasn’t really been as bad as I thought as far as that’s concerned. Some people who have reconstructions seem to have more shapely breasts than I do now so I think reconstruction has improved over the last few years. I would research which hospital you go to though as there seems to be better choice if you go to a breast cancer centre of excellence.

Mole

Hi Annelee

Thank you kindly for your support, its a great comfort at a difficult time. I have talked with my daughter and she handled it better than I thought, we both just cried but also managed to laugh in the end. I am predicting many more momments like that are to come over time, so long as we remember to laugh we should be fine. The only thing I am looking forward to thoughout this journey is meeting remarkable people, such as those here on this site.

catherine

Hi Mole

Thank you for your support. Reading your situation makes interesting reading for me. At first I felt like I didn’t have a choice whether to have a mastectomy or not but the breast care nurse did speak with me afterwards and said it is my choice and I could still opt to have the lump removed however to bear in mind the size difference it would create. At the momment that sounds more bearable to me. Will still keep that mind open for friday though.
I know I’m about to sound stupid but whats a breast cancer of excellence?

Catherine

Sam

Many thanks Sam, may come in useful

catherine

Some hospitals have been designated breast cancer centres of excellence because they have specialised in cancer and particularly breast cancer. therefore they have a better range of surgical expertise and knowledge of treatments etc. Barts in London is one, so is the Royal Marsden also in London. I th ink there are others.

The more women who are diagnosed at a hospital and treated the better, Dr Foster (an online information service for doctors and patients) says anything under 100 women diagnosed per year is less than optimum.

I got better treatment at Barts than at my local hospital, my local hospital had a far higher rate of mastectomies too. It has been shown in research that surgeons have a big influence on what operations are done, so maybe you get their favourite. If there are more surgeons you are more likely to have a choice and a range of opinions on what could be done. Of course, some people prefer someone else to make choices for them but I’m not one of them.

Mole

Hi Amethys I did contact you on your other thread and have been looking to see how you got on - so sorry it wasn’t a cyst (obviously keeping my fingers crossed didn’t work) and now you have a really hard decision to make. What I would say now is ask as many questions as you can think of and try not to be afraid of asking the hard ones so that you can make an informed descision which is best for you and give you the best possible life and quality of life. It is understandable that you will feel emotional as you have had a very large shock but in my experience after a few days acceptance sets in and you can then look at things more logically and confront what you have to…until the next descision has to be made as believe me it is one descision after another for a time. I will be thinking of you.
XX

Hi Catherine

So sorry to hear of your dx. This is a very scary time for you and it is quite normal for your emotions to be all over the place. There is such a lot to take in all in a very short space of time. I think it’s worse if you don’t have a partner at home who you can turn to at a minutes notice. You are very young to have to be facing this - I was classed as young at 40 but there are a lot of ladies on this site much younger. I did not have to face the dilemma you are in as my cancer was a lot smaller and the surgeon offered lumpectomy as a starting point - luckily I did not face further surgery and missed chemo and skipped right to rads.

You don’t say how old your daughter is but going by your age I would guess she is quite young - my son was 18 so it was easier in some ways to tell him what was going on, but on the other hand he understood so much more of the implications and took the news fairly hard. There is a booklet called Mumm’s Lump that you can order on this site if you haven’t already got it from the hospital, this might help with what you tell your daughter.

I hope you get some guidance from the plastic surgeon and keep in touch with the BC Nurse for help and guidance as well - they are wonderful wonderful people.

The ladies on this site are great and you can come here and ask whatever questions you have - no matter how stupid a question might seem someone here always had an answer.

Whatever route you take I wish you all the best.

lilac

xxxx

Hi Ladies

Thank you all for your kind replys and advice, I think I’m addicted already!

Today has being a busy day, I havent moved from the sofa for about 6 hours because all the calls and texts, its surprising how popular you become when the poop hits the fan! I’m sure every single one of them will be a huge support for my daughter and myself along this journey. I haven’t being too bad today, I surprised myself although I have found it hard telling people for the first time. Have spent the afternoon doing some well deserved retail therapy with my daughter, away from the blasted phone. Of course my daughter came home with a far better looking wardrobe than myself but it gave us chance to chat some more in a relaxed manner.
Mole thank you for the info, I will certainly look into it as I am in the midlands and London is a distance for me. I am quite a strong minded person and felt a little uneasy about being told a mastectomy is best and I’m sure the Ladies here know its hard to take everything in at that momment. My mind is a little clearer today and I’m ready for more info from plastic surgeon tomorrow. Thank you for your wisdom.

Holly thank you for checking in with me. I have being pleasently surprised by the warmth and support here and I’m sure this has helped my slightly better mood today, Just knowing people here understand and are/have gone through similar is a huge help. I have lots of questions to ask tomorrow, I’m not affraid to ask even if it sounds daft. Offen what comes out of my mouth daily is daft so why should it be any different now!! One things for sure the decision I make will be mine and what I feel is best for myself at this time.

Lilac thank you too for your kind words. I am sorry to read of your dx at such a young age, its terrible that anyone has to be here, old or young. I have read some threads from much younger ladies than myself and its just heart breaking, I’ve had to stop reading some of them. My daughter is 15 (I started young!) so she too understood the implications however she is also aware that her Auntie has being down this road twice and is fit and well today. I have always being upfront and honest with her and have kept her informed at every step. I’m sure she will be my strength through this. I have already spoken to the BC nurse to request some pics to look at tomorrow with the plastics to give me an idea of what the outcome of recon could be.

Sorry ladies if anyone thinks its somewhat selfish of me to go on about myself but I will rectify that in time, that is a promise. I also apologize for my crap spelling, for some odd reason my cat likes to sit on my lap when I’m on the lap top and its hard to see what the hell I’m typing!

Thanks again to every one of you for your wonderful support, I am extremly grateful.

Catherine x

Its good to hear your so positvie about things now Catherine.

All the best for monday. Go armed with your questions and extra paper to write down anything thay say

Love

Bridie

Hi

Just a short note today…promise!

Just over a week since dx now and I feel alot better. The appointment with plastics went well. I explained my concerns about a mascetomy and asked what the other options were. The Dr agreed with me and I am now having a WLE, it does mean I will lose my nipple but I can cope with that, followed by chemo and radiotherapy and tamoxifen. I saw my consultant yesturday and he seemed happy and optimistic about my decision. I am waiting another 2wks for my surgery as my consultant is on holiday and he said he really wants to perform the op rather than a team member. I know its going to be hard waiting but he did a great job on my (benign) lumpectomy some years ago and I have every faith in him.

Thanks bmt for your advice, I have a huge pad for my questions that has being used a fair amount this last week!

I was told I may have a blue dye injected at start of surgery that will stain my skin, does anybody know how long it lasts for??

Catherine x

Really glad to hear that they are going to do a less radical operation and that you will get the top man for surgery. Maybe bring someone with you to write down the answers to your questions, I asked loads and my brother made notes.

Sentinel node biopsy involves blue dye which shows up the most important lymph node or nodes to which the breast lymph drains, if these have cancer cells in them you would need a further op to take out other nodes. The blue dye seems to stay a variable length of time, I didn’t notice mine at all whereas some women seem to have bluish breasts for months. The blue is also seen in the urine the day after surgery but I don’t remember this either

Good luck

Mole

Hi Mole

Thank you the advice on sentinel node biopsy. There are so many different terms to get the hang of, but I’m getting there slowly!

I am really pleased (well as pleased as we ladies can be under the circumstances) that I am getting the surgery of my choice, I would of prefered a lumpectomy but thats not possible. My consultant is a great chap, he also operated on my sister after her first dx, his results are good.

How far on this journey are you?

Hope you are in good health

Catherine x

hi amethys,
I’m 36 and was diagnosed on Tue, going to have MRI scan next Tue and then surgery on 14th - have to decide whether to have WLE or full mastectomy of one breast- my lump is 1.2 cm - i just keep thinking why, why didn’t I go to the dr earlier? how old is your daughter? I have asked the Headteacher at my 9 year old’s school to tell absolutely ALL the staff so that she gets TLC - their response has been fantastic. The headteacher died of BC last year aged 51 so Martha knows about cancer anyway.
God I wish I could drink some wine but it will just make the cancer grow.

PS
I’ve been a single mum for 7 years and have done the rounds of Internet dating etc but have a new partner - since Feb - and he’s being lovely - but he might leave when I’m bald and only got one breast - and you know what amethys, if you meet someone in the future and he could care less that you’ve had a WLE mastectomy, he’s not worthy of you. There are some really good people out there.

Hi Rosemary

How strange I have just left a note on your thread!!

I am very sorry to hear of your recent dx. Its great to hear you have a wonderful new partner. I am worried about maybe meeting someone new after all of this but I’ll cross that bridge when I get there. I’m sure I’m not the first woman to feel this way.

My daughter is 15, I don’t think this is easy for any of our children regardless of age but she is doing ok so far, we laugh and cry together. Hows Martha coping?
I noticed some links on here for childern to chat to other kids who’s parent has had a dx. I have already popped into school as spoke with her teachers, they have being great!

I really don’t think your partner would leave when your bald with one breast, he sounds a super chap!

Have you being told what might be your possible treatment plan is yet? I was told a bilateral mastcetomy would be best but I’m not ready for such huge surgery (had a week to decide) I need more time to gather all info and mentally prepare myself for that. My consultant was happy to go with my wishes. Make sure the decision is yours and what feels right for you at this time.

I didnt ahve an MRI, I had a bone scan and CT scan, got the all clear from them on wednesday.

Good luck with your MRI, My thoughts are with you and your family

Catherine x