I'm terrified

[Brewster]

Hi julia

I am only halfway, have had 3 x EC, not pleasant but doable and go on to 9 x weekly T next week

Good luck with everything xx

[sentangelo]

Hi Donna and Mel! Wow!!! Amazing! It gives me comfort that these things happen. As if someone is watching us and helping us even if it's our own subconscious. It is a great helper. And all these incidents probably have saved our lives! Thinking of you ladies and wishing you quick recovery 😘 Julia

[sentangelo]

Brewster, I love the way you put it: "go with your instincts". Yes! Exactly. I think it is always the best way to go. And sometimes even if all the arguments are against. I'm happy it's over for you with the surgery. How's is chemo for you???? Are you ok with it or it's bad?

[Brewster]

Hi Julia

If you feel, in your gut, instinct , whatever that you need a double mastectomy you can insist on having that. I had a bilateral mastectomy in November for triple negative and I was adamant from the very first day that they were both coming off! I was very lucky and had a very supportive oncologist and surgeon who did not quibble whatsoever but I know others who have had to fight for a double. I know ladies with single mastectomy who are very happy and others who also can't live with the remaining boob and are now undergoing further surgery. I haven't had recon by the way and won't now and I'm halls with that and can live with that . The main thing for me was getting. Through this. Am currently half way through chemo. Best of luck xx my advice would be to go with what your instincts are telling you xxxx

[Donnaandfamily]

HI Ladies

reading your message I wanted to share my expereince.......

Just before Christmas 2013 I woke up from a dream where I was screaming I have cancer. It really bothered me but I pushed it to back of my mind.

After Christmas I was having a shower and felt my breast....no lump it just felt "different". I was so freaked by my dream I went to the GP in the new year.

She said nothing to worry about and she couldnt feel anything. However she said she would refer me for peace of mind. I then saw  the consultant who said she couldnt feel anything and was confident it was nothing.

I had my mammogram and the gates to hell opened and I began this journey!

I dont know what made me have the dream but had I not had it I would not have gone to my GP....the feeling of "differen in my breast" went away after a few days..... but by then luckily I had seen the GP and was on my route to the consultant..... so I would not have gone to see anyone if I had left it.

Donna x

[Mel66]

Hi Julia
Your dream sounds a little like the experience that my mum had. When I phoned her to tell her that I had been diagnosed with breast cancer she told me that she had feared that to be the case (even though I hadn't mentioned anything to her at all). She said that a couple of weeks prior, she had been sitting in her living room and had heard two words being spoken. Just "Mel, cancer".

Strange but weirdly wonderful!

[rosie_ree]

Thanks Julia, that's really helpful! xxx

[sentangelo]

Hi Rosie, I'm 36. So I fall into the young category. I won't have radio but will have chemo. I don't care about going bald at all. That is reversible. But the breast staying there and obsession does not make me live normally. Well, I totally understand how you feel as these thought also are on my mind. The doctors said that plastic surgery is very advanced these days and they would be able to make both breasts matching even if one of them stays in place. So they reassured me it should be fine. But deep inside me I felt differently and I learned to listen to myself with years and realized that my guts never lie to me. It's actu the same how I found out about cancer. The screening missed it last August. But in January I had a dream. Very direct and open one. I've seen myself in a hospital with a doctor looking at me saying nothing. But then the doctor in my dream pulled out a card to my face and the card read "you've got cancer. go to a doctor". So I woke up in the middle of the night and instantly found it. So what I'm trying to say is that only you can tell what's best for you. I'd suggest to listen to the doctors and then add your own thoughts and feelings to the info they provide and then make a decision/ understand what's best for you. And then try to talk to the doctors. It worked for me and now I'm very happy with my decisions. Well at least they give me comfort that I'm in control of my life still. Xxx. Julia

[rosie_ree]

Julia,
Do you mind if I ask how old you are?
I'm 30 and they are looking at a single mastectomy, I feel.exactly the same as you and at my age I really can't stand the thought of having odd breasts. I know.it's not.important in the grand scheme of things! I'm not even.worried about going bald but I can't stand this idea x

[sentangelo]

My dears! Thank you so much for your responses. That really helps. Well, I was not able to keep my mind off and went on thinking about my second breast staying in place. So I just sat down and written a long email to my doctor giving all of my reasonings why I want the second breast removed as well. Nothing emotional, just logic and well grounded argumentation. And they listened!!! And they said that it indeed is a good idea to go ahead with the bilateral mastectomy. So next Wednesday I'm going for the bilateral mastectomy and direct reconstruction. Yey!!! Can't wait. It's 5 weeks since the diagnosis and I'm freaking out a bit it takes so long. I really hope for the best. Hugs and kisses! Julia

[Weeannie1]

Hi Sentangelo,

I can really relate to your feelings. My genetics test came back negative too, but my maternal aunt died of breast cancer, my mother survived breast cancer, and a few of my mothers female cousins have had the disease. Some of them survived cancer, some have not, so my docs are thinking that there has to be a genetic link somewhere along the line, just not the BRACA genes. I am now on the list for an elective double mastectomy after having undergone a WLE, chemo and rads last year. I had been having yearly mammograms for 13 years prior to diagnosis due to the suspected genetic link and no longer have the confidence in mammogram as a tool for picking up cancer (I hasten to add my diagnosis was lobular cancer which doesn't always show up on mammogram). I also had been going back and forth to the breast clinic with lumps for several years and was denied a bilateral mastectomy 6 years before my diagnosis was made. All this has played on my mind and when I met with my surgeon and macmillan nurse, we decided that it was in my best interest to go for an elective bilateral mastectomy. It's not an easy decision to make, but I know in my heart that it's the right decision for me.

I wish you good health and every success in whatever decision you make and also hope that you meet your Mr Right somewhere along the line.

Sending big hugs. Ann x x

[Carmen42]

Hi Julia,
We all go through a lot of different emotions during this time. I was diagnosed end of November and had single mastectomy in Dec. I was terrified by the thought of how I would look, especially the fact that there would be no nipple... I like symmetry and really believed I would look a bit freakish.

However, when the dressings came off I was ok with the appearance of my new fake boob and after the expander implant has been fully pumped up I can honestly say I am very happy with the appearance, the scar is big but is very neat and smooth. I'm not so happy with how it feels but that will change when I get a silicone implant put in to replace the expander! Even the lack of symmetry doesn't bother me!

I'm sure we all obsess about the cancer recurring in the other breast or elsewhere, it's only normal and is something that we all individually have to find a way to live with. It probably gets easier as time goes by. I have found speaking with my BCN enormously helpful, she really helps put things into perspective.

I can't really advise about you finding a man, but whoever he is, if he's a good guy he will love you for who you are not for your boobs.

Hope you begin to feel more positive about things soon, the time leading up to surgery is possibly the most difficult to deal with emotionally.

Love Carmen xx

Ps really good news that your genetic test came back negative 🙂

[Jo_BCC]

Hi Julia

Sorry to hear you're feeling so frightened, there is support here to help you.  If you would like to give our helpline team a ring they will be only too happy to talk you through your worries and concerns.  Calls to the helpline are free 0808 800 6000 lines are open now until 5pm today (weekday) and 10-2 Saturdays.

I hope this helps.

Take care,

Jo, Moderator

[pandorra1]

Hi julia, I believe many of us have similar thoughts and to be honest, it's probably normal. I have just been told all clear, lymph nodes clear and need radiotherapy and drugs. Then, you start thinking, what if?  The ladies here are brilliant and I am sure you will get great response. We have to carry on, think of the days ahead and smile. There is no reason why you won't meet someone, look in the mirror and like what you see. Stay positive and lol xxxxxxx

[sentangelo]

Hi Ladies!

Today I got my genetics results back and they are negative. Which is very good news as I do not have to obsess about the future of my daughter any more. At the same time it means single masectomy, which is also good news in a way. However, the second breast will stay in place and I already obsess now about the cancer appearing there. I'm terrified of that and can't stop thinking that it will appear there as well at the later stage and I would have to go through all of that again. The doctors say they do not want to remove the second breast now as my risks are only 2% higher than for all women to develop cancer in the second breast. I understand the statistics, but I kinda fell already in the category so I do not know how to deal with the remaining breast. On top of that with the single mastectomy and recontruction I will most probably look like a cripple. Not that it is the most imoirtant thing at the moment. But I am still young and was hoping of may be someday still find a man and have more children. And with all of this happening I most probably have to say good bye to all of those dreams and hopes. I am sorry for a negativity. I am usually very positive and hopeful. But this is probably one of those bad days.

Does anyone of you relate to this? Do you have a similar eperience? And thoughts/feelings? What do you do?

xxx

Julia