New to all of this

Hi there,

I am new to all of this and have never posted on a forum before, but somebody suggested joining to help get things off my chest and to gain support and knowledge from others in my situation so thought I would give it a go.

I am 29 years old and on the 10th January I was told that I had an Invasive Lobular Carcinoma in my right breast and that the only way to treat it was to have my breast removed followed by chemotherapy and maybe radiotherapy to.

My diagnosis was prompted by me finding a lump in my breast shortly after miscarrying our first child at 20 wks. I had just come to terms with losing my baby when I was hit with this news and just couldn’t believe it when I heard the words coming out of the consultants mouth. Why is all this happening to me I asked myself? What have I done to deserve this in life?

Since my diagnosis I have taken on the attitude that I need to stay strong and positive. It is what it is and I just have to deal with each day as it comes and get through all the treatment in order to enjoy the rest of my life.

I have decided with the help of my consultant to have a mastectomy with an immediate reconstruction using tissue from my tummy. Has anybody else here had this operation and can you possibly tell me about your experience please? I have attended my local Breast Reconstruction awareness meeting and have spoken to a couple of older ladies regarding this procedure but not anybody closer to my own age. I would just be grateful for all the knowledge from others that I can retain.

This week mother nature through a spanner in the works and I found out I was pregnant again. Such fantastic news was so devastating and I just sat on my bed and sobbed. What on earth was I going to do? My operation is in the process of being finalised and I know that I can’t afford to delay treatment. After speaking to my consultant both my husband and I had to make the most difficult decision that we have ever been faced with considering how much we want a baby and the fact that Chemotherapy may cause fertility problems in the future. We have decided not to go ahead with the pregnancy and it breaks our heart.

I was also told this week that my Sentinel Node Biopsy has tested positive and all my Lymph nodes have to be removed at the time of my operation. Not a shock as we have always been advised that this could be the case. Has anybody suffered from any problems due to removal of lymph nodes?

Sorry to blurt all this out during my first post but better get it all out rather than dwell on it.

Thanks

Namar82

Hi,

I would just like to send you all the hugs and support I can.

I can’t imagine how bad it must be to have to face a termination as well as everything BC throws at you.

I had full removal of my lumph nodes along with a WLE (lumpectomy) in December. I have had some pain in my upper arm, and swelling of the site where the nodes where removed which is finally going down now. But hte pain is nothign unbearable, and apart from teh first few days paracetamol has kept it under control.

I’m sure other people will be along to offer support soon, this is a fantastic site for that. Ask all the questions you want,rant and rave when you need to, and you will find people here and on the helpline to hold your hand along the way.

Lynda

Hi Namar82

Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site. While you are waiting for replies I have put for you below links to some of BCC’s publications you may find helpful. Our team on the helpline are also here to support you through this, offering a listening ear if you want to talk, no question is a silly question. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2.

Resource pack:
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early-breast-cancer-bcc145

Support for younger women:
www2.breastcancercare.org.uk/publications/about-breast-cancer-care/support-younger-women-breast-cancer-sm24

Standards of care for younger women:
www2.breastcancercare.org.uk/publications/younger-women/standards-care-younger-women-breast-cancer-bcc97

I hope some of this helps. Take care,
Jo, Facilitator

Hi Namar82,

Diagnosis is awful enough without having to deal with the whole fertility issue too. And that is awful enough without having had to make the decision that you’ve had to. You must be so upset right now. There have been other women on the forum who also had to do the same as they were diagnosed early in their pregnancies. Hopefully some of them might come along and say hi if they see your posting - but if not, if you search through the threads you will probably come across them.

I was diagnosed last May at the age of 33. My husband and I had just started trying for children and at the beginning I was more devastated at the thought of a future without children than not having a future. But now I want to get better and will then deal with the children issue… It has been a long haul with the treatment but nowhere nearly as bad as I had imagined it was going to be. I have had chemo, double mx, full lymph node clearance and radiotherapy and now have ongoing Herceptin and Tamoxifen. I will have DIEP (tummy tissue) reconstruction later this year, so I’m afraid I can’t really help much with that apart from to tell you that I have met some young women who’ve had it done and the results were amazing (they were so pleased they were happy to share!). It is a big op but has fantastic results.

Whereabouts are you based? BCC run excellent forums for young women and cover issues from fertility to dealing with menopausal symptoms (chemo can send you into a temporary menopause), reconstruction, body image, lymphoedema etc. It is also extremely helpful to meet similar aged girls going through the same thing. I went to one in London in July and the fertility expert (who I have subsequently got myself referred to) said that if you are under 30 you have a very good chance of retaining your fertility after chemo.

Sending big, big hugs.

x

Dear Namar 82

My heart goes out to you

i have just had lumpectomy and sentinel node biopsy. I am also supporting my beautiful son who is 28 and has had major neurosurgery. He got married in June and got diagnosed in sept has had 2 ops one of which took 12 hours and was a very unusual dangerous op. he now needs to go for third op soon. I cant imagine how you feel all i can say is despite being terrified he has come this far. People like him and you inspire me and somehow you will find the strength, hard though that is

All my love Poppy x

Oh Namar what a horrible situation to be in… Such devastating news on devastating news on yet more devastating news.

Can you have some eggs harvested before you have yiur treatment to help preserve your fertility… If this isnt possible sometimes they give zoladex injections during chemo to put our ovaries to sleep in the hope that they will still be working after you complete your treatment… But as you are still young you do have a higher chance of your fertility returning after treatment than somebody 10 years older.

Its just seems so unfair to be bombarded with this all and don’t worry about blurting things u think you have every right to do so… I’d be stamping me feet and screaming and shouting at the injustice of it all.

I had my nodes removed in September and I’m fine so far… There is a higher chance of lymphoedema when you have all your nodes out but most people who have all their nodes out do not get it and you can do things to minimise your risk like only having injections or infusions in the other arm and keeping your hands well moistured, etc

Take care and good luck with your treatment
Lulu xxx

I am so so sorry to read your story - it is totally sh1t and you must feel completely beaten up.

I was 28 when diagnosed almost 5 years ago - had 14/25 lymph nodes affected so full mastectomy and node clearance. I had the op where they take a flap from the back. It was and the reconstruction has never bothered me. I do have mild lymphodema from having no nodes, but again all that has involved is occasionally wearing a compression sleeve when I’m at work as the arm can get a bit heavy form being on one position. They give you exercises to do to keep good mobility and over the last few years I’ve been skiing, trekking in borneo, run half marathons - it hasn’t limited my life.

On fertility - they tried a cycle of IVF for me after surgery and before chemo. This was free on the NHS so embryos could be frozen. It didn’t work for me - I think as I’d had the contraceptive injection - but it works for lots of people so ask about this option. Also, you can as others have said have jabs to protect your ovaries through chemo. I didn’t have this - can’t now remember why. Think it was a trial at the time and I wasn’t offered it. My cancer was hormone negative, not sure what yours is. I hope you don’t also mind me sharing that I am currently 35 weeks pregnant after being told the chemo had knocked me into menopause. I don’t want to make you feel worse but instead just hopefully to help you look forward to all this cr8p being over one day.

Sending hugs xx

PS also just seen that you’d posted on my earlier thread - Really pleased it gave you some hope. Hang in there xx

Thank you so much to those that have replied.

Each one of your posts has been helpful in some way. I am really glad I decided to join the forum and can see that I will get so much support and knowledge from you all.

Big hugs
xxx

Hi Namar,

What a tough time you’be had, big hugs to you!

I was 32 when I was dignosed in August last year, I had 4 months of chemo and have just had a single mastectomy with immediate LD reconstruction (from my back) and start rads in 2 months. I asked for the tummy flap reconstruction (purely to get a tummy tuck on the NHS lol) but my plastic surgeon wasn’t keen and said that because I was getting rads there was a higher chance that part of treatment would damage the recon where if I had a LD recon there’s a better chance it’ll be ok and undamaged so I decided to go for the LD. I must say, my recon is amazing I’m so pleased with it. I also had my nodes removed and 11/29 were affected - I think it’s fairly common to have to have them removed.

Speak to your BC Nurse about Zoladex to see if it’s an option for you. It’s a 4 weekly injection that temporarily shuts down your ovaries to protect them so the chemo drugs can’t get in to damage them - still no guarantees of fertility but it’s an extra step of protection.

I hope that helps, any questions about anything then just ask - we’ve all been there and someone should be able to help.

Caroline xx

Hi Namar

This is my first time leaving a message. I am sending you big hugs too. What a lot of you have had to deal with. I was not given the option of having reconstruction immediately so will have to wait and unable to offer any advice on that - I had a mastectomy and all my nodes removed (as they could feel them so all had to be removed). The hospital PT department go through exercises that have to be been done every day following surgery and indefinitely to reduce the risk of lymphodema. This term terrified me when I heard it but I was advised that it is treatable not dangerous and not necessarily occur. My periods stopped during chemo but returned a couple of months following chemo.
Claire
xxxx

Hi All

I saw my consultant last night and got the best news, my MRI scan hasn’t revealed any signs of the cancer in my left breast, was so relieved.
My operation date was also confirmed as being the 2nd March. It is all feeling very real now that the date has been given. I just have to prepare for it now.

Thanks

Namar82
xxx

Hi Namar,

This is also my first post in the forum. I was prompted to reply as I am also a 1982 kid :slight_smile: and of course cause I want to send you all my energy and support. I am so so glad to hear everything is okay in your left breast. Definitely a reason to celebrate! Although I can imagine it might all be feeling more real now that you have a date. You might be tired (or not) to hear this, but I’m sure it’s all gonna go really well. In my case there was hardly a wait. I was told I had BC 2 weeks ago and had a lumpectomy 4 days ago. The whole going-into-surgery thing was not as frightening as I imagined, and it is going to be the same in your case for sure. It will go well. Also, we are really young and I’m sure we’ll have our own lovely family soon enough. Thankfully we’ve got lots of time, energy and health to get into it as soon as we’re done with this.

Many hugs for you and your husband,

Carmy

Hi Namar,

I’ve only recently started posting but was touched by your story - I’m 30 and have no family yet. We did manage to get some embryos frozen with IVF…it took place between my op and chemo which I’m currently having.

If your op is going ahead on 2nd March I just wanted to send you some support and hugs as it is scary no matter how prepared you feel. I found the whole process very ‘doable’ and my nurses were fantastic, even though I was so nervous beforehand.

They will take good care of you I’m sure,

Sah xx

Hi there I am 37 and was diagnosed with ILC on 20/1. I had my mx a week ago today. It is not nearly as bad as you think. I had 3 nodes removed and get the results of the op on 6/3.
It is awful to start with but things do become more manageable. I have a we boy and we wanted another but have taken the view that we are blessed to have our boy.
You need to listen to your doctors. It is an awful dilemma for you and so unfair- particularly when you see prams and new mums everywhere who seem to be enjoying life to the full and you have been landed with this. I feel like this and you will even more so, but it is natural. You are still so young and BCN at my clinic say they see this more frequently. I really wish you all the best. x

Hi Flower20 and Pianoorchid

Thank you for your words of support, they mean so much.

Sorry for a very short reply to you both but it is late and just wanted to post something before I go off the radar for my operation. I will be in hospital for 7 days but hope to be posting again when home.

Take care both of you and please stay in touch.

Hugs

Natalie xxx

Just want to send you much love and very best wishes for your op. xxx

Hi Namar82

Just want to wish you good luck for your op 2moz I’ve got mine monday full of mixed emotions.Big hugs
xxxxx