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Another newbie with a new diagnosis

6 REPLIES 6
Guest user
Not applicable

Re: Another newbie with a new diagnosis

Hi to everyone who's replied to me.
Wow, it's been a rollercoaster week! Last Wednesday I saw the consultant. Whether or not it's genetic cancer, I still have to have a lumpectomy. This is now scheduled for 3 weeks time.
The results of the biopsy I had a couple of weeks ago are that the cancer - even though it's only small (1cm) - is Grade 3. Because of this, it's most likely that I will have to have chemotherapy. They won't know for sure until after the results of the lumpectomy but I'm assuming that it's unlikely they will "downgrade" the cancer.
As for the genetic thing....... that's something separate, in a way. They need to treat this cancer first, and then any risk-reducing mastectomy comes at a later date.
We've told most people now. It's horrible, isn't it, telling people you love bad news? The worst has been telling my kids. Good grief, that's horrendous. So upsetting.
I keep veering between thinking very dark thoughts, and feeling like my number's up.... and then thinking this is nothing more than a blip, I'll get over whatever it is and that'll be over and done with.
I really wish I could switch off my thought processes, or at least shut out the worry! It doesn't do me any good to think those dark thoughts.
I'll stop rambling now. Thanks for all the messages of support.... and the advice about not googling too much! That's definitely good advice!

x
mickey24
Member

Re: Another newbie with a new diagnosis

Hi I was just reading your post and though i'd drop you a line. My sister was 28 when she was diagnosed 10 years ago and unfortunately she died as it was all found too late. For the past 2 years my other sister who is 40 and myself 45 have been trying to get genetic testing, saw genetics at st georges etc but they wouldn't test and told me my risk of getting breast cancer was 1% before the age of 47 so just continue with the annual mamograms. Fast forward to to May of this year found thickening in breast, core biopsy confirmed cancer and had lumpectomy last week and snb and as that tested positive had all my lymph nodes removed too. What a complete nightmare, I was so vigilant but now feell so let down as the cancer did not show on the mamogram and also the fact that they should have tested me and I might never be where I am today, anyway back to see genetics in two weeks with my other sister who is clear at the moment. Michelle xx BTW if anyone has any similar stories would love to hear from you.
Lilac51
Member

Re: Another newbie with a new diagnosis

Hi, my situation is a little like yours. I have a strong family history of BC although my sister was the only one affected who was under 60. I found a lump last November, diagnosed as lobular and was offered a lumpectomy. I asked if I could have a MX instead and the surgeon and breast care nurse said if I was happy with that then so were they, especially in view of my family history. I also mentioned that I would really prefer to have a double MX but was advised to wait until after rads. I still haven't had the results from genetics testing as my first blood sample didn't yield enough genetic material so I gave another sample last week. I've finished chemo now, waiting to have rads and have been making a nuisance of myself with the surgeon about the other breast. Thankfully he has taken my concerns seriously and I'm seeing a psychologist next week (have to tick the boxes if they are removing healthy tissue) so I hope I can have surgery soon. I'm not having reconstruction but may consider it later, but then I'm older than you and I would probably be thinking about immediate reconstruction if I was your age.
Please don't be too worried about surgery or another other treatment. I know it sounds trite but if you take things a step at a time they aren't too bad at all, even chemo.
All the best.

Sam_BCC
Member

Re: Another newbie with a new diagnosis

Hi secretsock

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I'm sorry to read of your recent diagnosis. As well as the support you are receiving on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

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


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 10-2 Saturday.

Best wishes Sam, BCC Facilitator

Guest user
Not applicable

Re: Another newbie with a new diagnosis

Hi secretsock.
I was diagnosed with bc in jan and although like you have it in one breast, I have had a mastectomy in both breasts with immediate reconstruction. Making the decision to have a mastectomy in both breasts was an easy descision for me to make as I hold a rare gene that makes me more likely to get cancer and I know this will reduce the chances of it returning.
Reconstruction is big subject in its self as there are different types and only through talking to your bc team of docters can you decide what is best for you. But one things for sure, reconstrction is NEVER a one stop operation....I had my operation In Jan and I will have another smaller one in september. The operation in itself was no where as bad as I thought. The docs will give you pain killers etc. The only thing that was a pain for me was after the operation I had these 2 drain pipes attached to me and for some reason oen one of the pipes just put me in alot of pain when i moved. But other than that it was not as scary as I thought. The best thing was waking up and still feeling femine as I was not flat chested and I couldnt see lots of scars...the docs have done a really neat job. I found the chemo the hardest to deal with.
I hope thiss helps. Good luck.
wintersocks
Member

Re: Another newbie with a new diagnosis

Hello Secretsock,
I just had to reply to you as your name is so similar to mine! also because you have 2 sisters (as I do) and also because you sound so scared....
The panic and fear is entirely understandable. I remember being rooted to the floor and unable to go into the Oncs office (dx Feb this year) I was terrified too - It's all normal, It is such a horrid thing to hear 'you have cancer ' that I am sure we go into flight or fight mode.
My diagnosis is a mixed cancer lobular/and ductal in the same breast large lump. and I am at least 1 node positive I am 51 at present having chemo and am due to have a mx (mastectomy) radiotherapy and hormone treatment as I am strongly oestrogen positive.

The reason I am outlining my dx is there are'numerous' cancers with different plans andl oncologists can have different opinions and sometimes treatment plans. I know you said you were seeing a specialist and I do hope that gives you a clearer picture as to what your particular cancer is and how they intend to treat it. Yours could be very different from mine. Once you understand your dx all this the panic will subside and and you will feel a little more in control when you know what you are dealing with - Honest!
Re: prophylactic mx, I was also determined to have this to my healthy breast and in fact my onc agreed if that is what I wanted but not without further discussion and counselling. I think I was asking out of pure fear then rational thought about recurrance. It is still an option, but it can wait. when I know more about my particular dx. I found it helpful to break it down and deal with one thing at a time. Otherwise it was so so overwhelming.

I do not know about genetic stuff but i am sure there are ladies on here who will come forward to help you, some very knowledgable about this issue.
Finally, I would say try to trust the team who will be caring for you, and if you don't, get a second opinion. To try to trawl throught the whole of b/cancer by Dr Google is exhausting and often inaccurate! and at times terryfying, so try to resist.
Please remember we are here to support you as we have all been there (or still are! with treatment). and peolpe will help.
Take care
WS x

Guest user
Not applicable

Another newbie with a new diagnosis

Hi everyone

I'm sure you know where I am right now.... moments of clear, focused sanity, moments of utter darkness....

Pants, isn't it?

I'm 48. My eldest sister, who's 4 years older than me, got diagnosed with breast cancer following a routine mammogram about 3 months ago. She had a lumpectomy for her grade 3 cancer and is now going through chemo. It was after her diagnosis that my middle sister and I decided we ought to get ourselves checked out too, because we know that our paternal aunt had died of breast cancer (albeit many years ago) and our paternal grandfather had died of breast cancer in the 1950s.

So we got ourselves checked out.... middle sister fine

Me... same lump, same place as my eldest sister

So, we are assuming it's genetic. We haven't had the genetic testing yet but will do so soon.

I have an appointment tomorrow with the specialist to discuss my options. I am nothing if not supremely practical and, in between those darker moments, I've done my research..... and I want a mastectomy. I don't want to spend the rest of my life in fear. I know it's not 100% sure that it won't come back, even with a mastectomy, but - if it's genetic - it will definitely help.

The thing is, I'm absolutely petrified. I hate hospitals. I've only ever stayed in hospital when I had my kids, and that was only for one night each time. The only operation I've ever had was for my wisdom teeth, about 25 years ago!

And now I'm seriously considering... going to be asking for... them to remove both my breasts - the healthy one too. I just can't believe that this time last week I was in happy ignorance, and now I'm having to face all this.

Does anyone here have experience of genetic cancer, and prophylactic mastectomy? How was the op? Did you get immediate reconstruction? Delayed reconstruction? No reconstruction?

Thanks.