New member to message board

Hi Ger

Welcome to the club, I am sorry that you have had to join us on this horrible journey. I was diagnosed in Feb and like you never cried, just took it on the chin and got on with it. The worst hurdle after the diagnosis was the loss of my long red hair, that broke my heart, but like everything else you just get used to wearing a scarf or wig. A piece of advice..... your head can get very painful when your hair is falling out as the follicles go a bit mad so I found using a satin pillow case at night really helped, I also got my hair cut short as when it starts to fall out it is everywhere, even in my cornflakes in the morning.
The chemo is doable once you take all the meds they give you for nausea, pain, ect and dont wait for the pain or nausea to kick in before you start to take them. I had my chemo up front ( 6 cycles) and am going in next week to have a mastectomy and immediate reconstruction. You should talk to your surgeon in detail about reconstruction and whether you can have it immediately or if you may have to wait and get him/her to arrange for you to meet with a plastic surgeon to talk through the options. This worked well for me as it gave me time to figure out what to do. Having said that, I am really scared about next week but I keep telling myself that the cancer will be taken out, I will have a new boob and I can then start to really believe that I am in recovery.
Just be good to yourself, take whatever help is offered to you and always bring someone with you to your appointments as another pair of ears is critical.
The best of luck.
s

Thank you Shinners,

It's lovely to hear from you and I can only imagine how scared you must be with your surgery looming in the next week. I hope you find the strength to come online after and let us all know how you get on. I will be thinking of you and praying for a quick recovery for you. I couldn't agree more with you about the idea of having the cancer taken out because that is the most important thing.

Thanks for the advise on the pillow case, the appointments etc as this all helps and I would like to be here for you now and when you are finished your surgery. Please feel free to have a good old whinge with me soon. I'll be depending on you to talk me through how your feeling. Best of luck for now and keep chatting.

Ger

Hi Ger
I also have lobular cancer, diagnosed end of Jan - am in the midst of chemo at the moment. I started off with hormone drugs for three months as mine is oestrogen-driven but it didn't shrink the tumour enough so started chemo at the end of May. I will be having surgery after I finish 8 rounds, probably a masectomy due to the size of the tumour, and then radiotherapy after that.
It's all a complete rollercoaster - like yourself, I sometimes just want to have the masectomy and get the cancer out, but it seems they often favour the shrinking therapies first and then surgery later on - I guess I just put my faith in the experts. I am seeing the oncologist tomorrow so will have some idea of what the next step is.
Chemo isn't easy, nor is losing your hair. However, the wigs these days are amazing as are the bandanas and you adjust to it all. Having friends and family support is vital, as it chatting online on sites like these. Take it one step at a time, always take someone with you on hospital appointments, write everything down and, above all, keep on living. When I'm not laid up with chemo, I get on out there with my kids, husband, friends and do 'normal' things. I refuse to be beaten - they say a 'kick ass' attitude is essential (along with sense of humour!)
Best of luck with everything, keep us posted

Hi Kazoo,

Mine is exactly the same, receptors are estrogen driven hence the hormone therapy treatment to shrink, as my tumor is about 5cm. Apparently on the first scan I had done two years ago it showed up but they put it down to the thickening of the tissues in the breast, my radiologist wondered why they had not done a biopsy then, but I had got an all clear letter from the clinic. That made me a bit mad as it may have only been a lumpectomy them or perhaps even just hormone therapy. Anyhow we are where we are and it has to be dealt with.

It sounds like I could be you, as the treatment plan is similar. I have a very loving supportive family and have been keeping myself busy with anything and everything. I like the kick-ass attitude and so far have a good sense of humor, hoping that will stay with me throughout the process. I never felt like keeping my cancer a dirty secret as when my mum died at the age of 45 we as kids were all kept in the dark until the last couple of months. My kids are a bit older now and it helps them to be able to talk to me and we can openly discuss any treatment plan that is being offered.

Thanks for your post and you take care of yourself, chat soon

Ger

Hi,

Just read your message. I have been lurking on the site for a little while now. I'm not sure how to navigate or post messages, not used to forums. I find it very reassuring hearing everyone's accounts and progress and tips.
A little about me. I went to my doc two weeks ago with a lump and slight indentation. I only noticed the indentation first, anyway, Doc said it's not a cyst and said he would send a letter of referral to the local hospital for a triple assessment. Two weeks later, still no sign from the hospital, so I rang the hospital and they said they have a back log and it could be another 4-6wks or so. I went into my doc and told them to send another referral letter. I talked it over with the hubby that night and said I can't wait another 4-6 wks or so, so we decided to get it done privately.
Went to the Mater Private yesterday for the triple assessment. They were lovely. Turns out they said I have two spiculated tumors in the left breast. They put a surgical clip in as well as did core biopsies then another mammogram to see the clip in place. I have an appointment for next Wednesday @ 2.50pm for the results of the of the core biopsies.
I'm up and down like a yo yo! One minute I am as strong , next I'm a quivering wreck! I'm 38yrs old, married with four daughters aged 19,13,11,&8yrs old.Hubby is such a blessing.

Hi Mimiraffo,
I am sorry to hear your news and wish you the best of luck with results. I finished treatment in Jan this year and doing well TG.
I just wanted to say I attended the Mater Private and found everyone to be fantastic. They were just so quick. I found the lump on a wednesday night, attended a consultant on the Friday, had a triple assesment that Friday, cancer confirmed the following Friday and operated on the following Thursday. Everyone was amazing and there was a calm sense of urgency around me at all times. I found the BC nurses S and E fantasic, they were always available when I needed them. I am not saying that is everyone's experience but that was mine.
I will be thinking of you and hope you get a neg result. If you want just pm me and I will let you know the team I was under.

Try to keep occupied this weekend and fingers crossed
Jeanette

Ger53 & Mimiraffo

It's such a shock being diagnosed, and it will all get pretty busy with appointments, treatment, surgery and that excludes home life! In the next few months you will be talking the talk & walking the walk like one of your medical team, but hopefully before you know it you will be flying through it all.
It is great to be able to bounce around on forums like this one & I found it was brilliant for getting practical advice. While everyone goes through this differently, everyone that replied to my questions gave sound advice.
Wishing you both the very, very best of luck over the next few weeks & months. xx

Hi everyone
Good luck to ye all. i am comong up to my anneversy of finding th lump. I just cant believe that I have had two ops, 6 months of chemo and 33 radio th. this may sound funny but ijt only feels like a blink. It is not an easy time on yourself and the familly but the kick ass att is the only way Some days will be good and some bad but when you talk to others and see that everyone has a completly different treatment you realise that each of us are treated individuals. I found this a comfort knowing that so much research has been done.
If you can find a support group it can be a help. In the begining I didnt want to go and only wanted to talk to people who were over the whole thing about 10 years ago. But we done yogo and different thing.
Wigs - Ask your hairdresser what colour your hair is. this sound funny but if the person selling you the wig has a hairdressing back ground they will understand the number system they use. I did this and got a perfect one. It is hard loosing hair. i was on holiday when mine started to fall and when I got home I was so fed up with it I got a no 4 and shaved it off!!!! i put my wig in the washing machine by mistake All I could do was laugh. It was ok and none the worse
A sense of hummer is a must. Life goes on and we need plenty of laughs.
Good luck for the up comong weeks and keep posting.
Sunflower

Thanks Encee Sunflower and Jeanette. You are all so encouraging and honest. Since Wednesday I could win an Oscar for all the different moods I have found myself in, one minute I'm laughing my head off, next in floods, then a quivering wreck, I'm starting to feel like Jim Carey in a movie !

I spoke with two neighbours and friends of mine, one a nursing practioner and the other a palliative care clinical nurse manager and they have told me what I already suspect( doesn't help having studied nursing myself!). Both of them have been great. Wednesday and Thursday all I was worried about was my four daughters and hubby . I'm not dreading Wednesday, It's the waiting around that's the killer!. It's hard to "ACT" normal in front of the younger girls. My eldest who is 19 already knows what's going on.

Girls, anyone out there get a surgical clip fitted during the ultrasound and when the biopsies were done and what exactly is it for? She said it was something for the surgeon, but I was so giddy(Get like that when I am nervous!).
Another question, I am meeting with a breast reconstruction surgeon on Wednesday, is it normal for a breast surgeon to give you the biopsy results?

That's my two cents for the minute

Blessings to everyone.

Mimiraffo.

Hi
I know how difficult it is waiting around on results of biopsies. I too had a surgical clip fitted and was told that it is used as a marker for the surgeon when he/she is removing the lump and surrounding tissue so they know exactly where the tumour is. I had chemo before surgery and the chemo appears to have shrunk the tumours so the markers are important for the surgeon, although I am having a mastectomy so not sure why they need them. I received all results from the breast surgeon who was and is fab and he then referred me to the oncologist and the plastic surgeon, although I meet with the breast surgeon most frequently in between chemo, which I just finished 6 weeks ago.
All we can do is take each day at a time and to try not to be too hard on ourselves. We have long roads to walk and there are always bumps along the way but remember there are also plenty of laughs so enjoy them when they come along.

Shinners, Thank you for giving me some light on the surgical clips. It's refreshing to know. Thank you for the encouraging words. I'm feeling OK Today so far, Wednesday 2.50pm at the Mater Private can't come fast enough!! I know this probably sounds strange but I will have some sense of relief on Wednesday when all is revealed and I don't have to feel like I'm hiding a secret from the younger girls, at the moment I feel like I'm acting around them. One of my friends gave me a book about breaking the news to the kids and I'm happy to say that I was already doing some of what it said. Drip feeding them over the last few weeks from letting them know I found a lump to going to the GP to heading to Dublin for the triple assessment( I live in Waterford City) to getting the results Wednesday, so I feel I have done something positive and glad it was mentioned in the book so that makes me feel I'm doing things properly and positively.

I feel already that from being on this site, it's a great support. Thanks everyone.

Mimiraffo

Hi Mimiraffo

The doctor that I saw the whole time from the day of triple assessment, to getting my results to discussing my surgery was an onco-plastics surgeon so I was lucky (I feel I was anway) that she was in the position to perform the mastectomy and immediate reconstruction, and the couple of follow-up check ups I had before chemotherapy.

Trying to get the tone right with the kids is a tough one; I had Little Miss Sensitive, and Little Miss Tough-Cookie to deal with so I did all the gently, gently approach & let them have their "moments", until I sussed that they were hamming it up! That then involved the serious chat of telling them to basically build a bridge and get over it, unfortunately this was the way it was going to be for the next few months & there was nothing any of us could do about it. The happy ending is that so far we are having a lovely summer and they are much better behaved than they were a few months ago. Then I again I have chilled out so much that I'm not as hard on them as I normally would be. Oh the joys of parenting, whatever the circumstances!!!

Good luck with Wednesday; you know where we are if you have any more questions that we might be able to help with x

Hi
Telling the children was hard but i and husband secided to be
truthfull from the start. It depends on the age and of course how you think the children will take it. I am very open about my cancer as I dont want people talking about something that I dont have. you know how people talk. ( I had to think about my mother as well. She is of the generation that thinks death as soon as she hears the word cancer) When my Dad had it years ago we were not allowed to tell anyone or talk about it. There fore I told the children to tell their friends if they wanted to. I also told their teachers in case there was rebounds or if they neede help. thankfully they have coped well. Eldest was doing J Cert and the other just starting sec school. Eldest was not impressed with the hair falling out and the jokes we made about it. thankfully a year later we have come out the other side
good luck on Wednesday
Sunday

Hi Mimiraffo and all,

I feel all you are going through Mimiraffo and these guys here are amazing with the amount of in depth information they can share and the care that comes out with every word that is typed. So far from reading all the forums I have gained such insight and positiveness.
I too will be in the clinic tomorrow to have a breast clip inserted and have pre-op assessment on Thursday along with an mri scan of both breasts. I am taking Femara over a week now and not sure how long that will be before they decide to do the surgery. I am happy with the way things are moving along for the moment but scared of what is ahead of me. We are all in this together and need each other for support.

I think I may have said this earlier but as a child of a parent who died from cancer I believe it is so much better to be open and honest and discuss in detail what is age appropriate. I was kept in the dark until the last stage and felt that I was not given any option to enjoy and embellish the life of my mother in the time leading up to her death. That was 35 years ago and I still live with that huge regret. As we all know, now things are so much more positive and there is huge success with cancer treatment now than back then. My Mum had pancreatic cancer which is so much more difficult to treat. I want to see my kids marry and I want to see my grandchildren (these are the thoughts that go through my head all the time) this is what makes me feel so positive that I will get through this.

I live in Dublin Mimiraffo and if you are ever up for treatment and want to meet for a coffee please let me know, as I would be happy to do so. PM me (not sure how to do that yet, but i'm sure there is something on the site that will allow us do that) your phone number if you want anyone to talk to.

Thank you for the support and advice of all the posters here. Group Hug xxxx

Ger

D Day tomorrow girls. Ger, would be delighted to meet up for a coffee and a natter. You are right we will have each other for support from this site, everyone has stepped aboard the treatment train and it's great to get an insight of how everyone is doing.

My younger girls know now what is going on and it's such a weight off my shoulders!!! It all started with one of them asking how a mammogram works and when I explained she said did they find anything when they did yours and when I said yes, they were full of questions!!! They were great, they even said if the results are confirmed they are gonna pick out my wig!!!( Hanna Montana eat your heart out!!) Lol. I'm so relaxed now.(puts kettle on for more tea!!)

MimiRaffo

Hi Mimiraffo
Just a quick line to say the very best of luck tomorrow, it looks like tomorrow is D day for both of us as I have mastectomy and DIEP reconstruction in the morning so I'd say we both wont sleep much tonight!!! Whatever the outcome tomorrow just remember that the docs and nurses are brill, science and medicine has moved on so much , so you will be well looked after and supported whatever the outcome. I will be out of action for a few days( hopefully in a morphine induced haze!) but would really like to hear how you get on. Please keep us posted

Shinners

Shinners,

I will be thinking of you, best of luck and try to enjoy that drug induced sleep while you can. Take care and hope all goes well.

Mimiraffo, best of luck tomorrow, great to chat and look forward to that coffee......your a tonic

Ger

Shinners,

Enjoy the Morphine and don't be afraid to click that button as many times as you like!! We will all be waiting for you when you get back. Hugs to you. Ger, it was great chatting to you and I will definately meet up for that coffee and a laugh.

Hi girls,

Best of luck with your surgeries! I get results tomorrow of 2nd wide excision...think I'm facing mastectomy! I would be very interested in hearing how it goes for you both especially the reconstructions.

Sending all the healing angels especially Archangel Raphael your way!

Hi Girlies,

Well arrived for my appointment @ 2.50pm.

Results so far:
Left Breast:
Tumour 1:Infiltrating Lobular Carcinoma with focal LCIS.
Tumour 2: Infiltrating Lobular Carcinoma. LCIS is present.
Still awaiting the hormone status on both tumours.
Tumour 1 is about 4-5cm
Tumour 2 is 1-2cm.
Stage 2 so far until surgery when they can have a better gawk.
Nodes appeared clear during the ultrasound but will know more when they have a look during surgery.
Will be having a PET scan and a bone scan.

I'm booked in for a double mastectomy in 12 days time at the Mater Private. Murder the left breast and elective preventative mastectomy in my healthy right breast.

I'm feeling fine. Just delighted that things are moving forward. I wasn't surprised when I got the results just glad it has name on it.

Keep the chins up ladies.

Blessings

Mimiraffo.

Hi Mimiraffo,

Well at least you are in a place of understanding whats going on, I cant believe you have the surgery looming in 12 days only. So it is the same cancer I have, lobular. As you say at least they know what they are dealing with and thankfully it appears not to have gone into the lymph nodes. The best of luck with the pet scan but all going well as mine did, it should be localised. I am thinking of you and I know you will be nervous coming up to the time, so keep in touch with me.

I was in the Mater today and had a battery of tests for pre-op but my surgery does not appear to be on the cards till end of sept/oct. That worries me a little as they are working with the theory that the femara hormone drug will shrink it so they will not have to take away so much of the tissue. I agree with you about the elective mastectomy of the healthy breast the more I think about it, so that will be a discussion I will be having with my consultant.

Sleep well tonight and try to not think too much over the coming days, you will be grand. Dont forget I can stage a sit in at your bedside if you feel up to some company

Stay strong,

Ger

Ger, of course you can come and see me in the Mater . I'm booked in the eve of the surgery on the 15th. Surgery on the 16th and discharged on the Friday the 19th. I have already today arranged for convalescence in a nursing home down the road from my house when I get discharged. I will be staying there from Friday until Monday. It will give me that little more time to recover and a watchful eye on me with the drains etc( and some rest before I head back home to the younger kids!).

If anyone else would like to visit feel free, pm me.

Stay strong ladies,

Blessings

Mimiraffo

Hi all,

Well I called in to see Mimiraffo the night following her morning operation (double mastectomy) and she is the most amazing woman I have ever met. Her strength and courage has astounded me and also her great sense of humor. Her faith will carry her through this, as she has such an abundance of this and I know from being in her company that I can now do this myself. I found myself more relaxed about this procedure than I was before hand.

Well done Mimiraffo for doing so well and thank you for all the encouragement.

Love

Ger

Hi Girls,
Im back in the land of the living after a roller coaster journey with mastectomy and DIEP reconstruction. It will be 6 weeks next wednesday and what a time I have had. Picked up MRSA so that set me back as one of the drain sites under my arm got infected and the drain had to be put back in again, also had to have a small skin graft after the initial surgery as a piece of skin didnt take. Took an allergic reaction to some of the pain meds they gave me and that wasnt pleasant, but I am standing and moving around and went to my cousins wedding yesterday which was great. The biggest issue I am having(aside from the drain site still oozing a bit) is the constant pins and needles and numbness in my arm, it is the most annoying thing in the world and drives me crazy. Physio wont see me until the wounds from the new foob have cleared up and I have been doing the recommended excercises every day and it has eased a bit but still taking pain killers. Any advice ladies would be great

Hi Shinners,
You have had a hard time! hope evey day you get stronger. It is normal to have numbness with ancillary clearance. My arm was like that for a while. I was told to lightly stroke my arm from the fingers right up the arm to the shoulder. The phyiso did tell me why but I cant remember what she said!!!! I got that much info it was hard to take it all in. It was a very funny feeling. Nearly a year on and my arm feels normal again.
Sunflower