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newbie lobular invasive :-(

29 REPLIES 29
Bernie610
Member

Re: newbie lobular invasive :-(

Hi hope you are all ok? Well CT & bone scan managed ok MRI was a whole different ball game however! Apparantly CT & bone scan results are fine apart from an area on my shoulder that they are not worrying about. I am very apprehensive however as have been here before, hearing something positive & at next appointment everything changing. But fingers crossed. Saw oncologist yesterday will start chemo next wk. Take care everyone x
Bernie610
Member

Re: newbie lobular invasive :-(

Hi Cress hope you are ok and your appointment was ok today. Had CT today the better if the 3 I know. Re your questions about how many doctors I have seen; I saw consultant on my first visit who was to say the least unpleasant, fortunately he was apparently a locum so should not see him again. Saw my regular consultant once in clinic and once on the ward before lymph node biopsy. Have seen 2 BC nurses. Haven't seen an oncologist. Meant to say the other day it would be better practice if they asked those questions you were asked at the bone scan at the beginning to prevent anxiety rather the end as would imagine they are standard. Re pain yes still having it to be honest it seemed to greatly improve then Sunday night was dreadful and not good since. I wondered if it was because I hadn't worn a bra at the weekend and so no support. Wearing one day & night now the pain is more my boob now still can't lie on that side or front and turning round in bed is terrible. Know what you mean about the damn cells worry. Any way really hope you are ok after today. Take care xx
Cress
Member

Re: newbie lobular invasive :-(

Hello Bernie,

 

It was my second MRI, I had a head loop one four years ago (when I had a brain hemorrhage), but I was a bit drugged at the time, so didn't really remember too much. I was a bit apprehensive about the MRI as well, but it really wasn't that bad. You are given some music to listen to through headphones but you still hear some noise. It was also shorter than I had expected - about 20-25 mins.

 

The CT is the easiest and quickest - no probs. The Bone Scan is a bit strange at first, as the camera is very close to your face, but not bad once it is moving down your body.   

 

I've got a 15 yr old daughter, so know what you are going through. Not nice as at that age, they're old enough to know the full impact of what is happening and young enough to really need their Mum! 

 

I'm hoping that once we get started on treatment, we can feel some sense of purpose. Are you getting any pain like Jets and me?  It seem so long that I now get the impression the evil cells are moving around my entire body! I understand that's a common feeling from a couple other people on here.

 

Try not to think about the actual tests too much... I think they're the least of our worries at the mo!

Do you see the same doctors every time you go to hospital? So far, I've seen two breast surgeons and finally last week, an oncologist.

 

Thanks for your kind thoughts for tomorrow. Please keep in touch and we can share the burden of our experience!

 

Best x 

 

 

Bernie610
Member

Re: newbie lobular invasive :-(

Hi Jets thank you for your message and I am really pleased you are on your path now and feeling more in control. Thank you for your reassurance xxxxx I am just not in a good place right now and need to pull myself together which I managed to do well originally and was very practical getting things organised. All that has gone out of the window right now. Good luck and thank you again x
Bernie610
Member

Re: newbie lobular invasive :-(

Hello Cress yes you do sound as though you are going through similar process. The delay and fear is terrible. I had my original core biopsy on the 11th March! have my CT & bone scan dates but not MRI. I am dreading the MRI I can't bare being trapped or closed in I don't know how I am going to do it. GP has Px something to take orally on the day but I don't think it will help. The longer I wait the more worked up I am. The bone scan doesn't look much better but don't think it is as enclosed. How long do they each take? I really hope your appointment goes well on Wednesday. Don't know about you but I feel totally out of control and everyday I am getting more and more weepy and less functional. Initially i thought 'ok I can deal with this' as they had said it was small wasn't in lymph nodes from the scans then this bomb shell was dropped. I do not know how I will cope at next results appointment I can't deal with more bad news I don't even know if I want to know. I cannot believe I feel like this and am being such a wimp when there are thousands of children suffering from cancer who just get on with it. I have a teenage daughter who I need to pull myself together for. She doesn't know how I feel I don't want to scare her. I only told her when BC was confirmed and the original plan was agreed with an operation date which was originally the 31st which changed to just the lymph node biopsy. The second date I was given was for today I just wanted to be lying in bed tonight knowing the offending breast was gone. If I had known this was going to happen I would have waited before I told her but of course that was impossible for anyone to predict. Sorry to moan on I know we are all using this forum because we are facing this thing head on and I really admire how brave so many people are. As I said good luck with your appointment tomorrow I really hope it goes well and that afterwards you can relax and move another step forward in your treatment plan. Take care.
Lucy_BCC
Member

Re: newbie lobular invasive :-(

Hi Cress and welcome to the BCC forums
As I mentioned to Bernie earlier, please feel free to use the BCC support services to help you through this difficult time

Helpline 0808 800 6000 weekdays 9-5 and Sat 10-2
Support ideas available here:

http://www.breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC

Cress
Member

Re: newbie lobular invasive :-(

Hello Bernie, 

 

Spooky... I'm in the exact same situation as you - I had my Bone Scan today at Guy's and last Friday, a CT at St Thomas and the previous week, an MRI.  I'm scared ridgid waiting to see Oncoligist on Wednesday but desparately want to get on with the treatment. I had a biopsy on 12.3.15 and it seems to be taking so long to know the true extent. I understand that it is normal to feel as if your entire body is being invaded. I have been told that, subject to the results, I will be having EC chemotherapy to shrink lump before any surgery, and Letrozole. Please let me know how you are doing, as it seems like we will be embarking on a very similar trek!

 

After the Bone Scan today, the radiographer asked me if I had any pain, any breaks/accidents, arthritis or any recent dental work. Made me v anxious, as I wondered what he had seen and if those were standard questions. Has anyone out there experienced similar? J x     

JETS
Member

Re: newbie lobular invasive :-(

Hi Bernie x hugs to you x I had many weeks of testing during which plans changed and I totally identify with how u feel like mat pulled from under your feet x hopefully the next tests will take place quickly and when u are sitting waiting just remind yourself it's so you have the full picture and can understand the clinical advice afterwards xxx ivr had bilateral mx and am getting through chemo (4 left) ; I was diagnosed end of November and just wanted to reassure you that you do get into a better state of mind when you can understand everything that's going on xxx
Simone67
Member

Re: newbie lobular invasive :-(

 
Lucy_BCC
Member

Re: newbie lobular invasive :-(

Hi Bernie
I am sorry to read that you are having such a difficult time at the moment, along with the support here please feel free to call our helpliners to talk things through, they are on hand with practical and emotional support for you on 0808 800 6000. Lines are open 9-5 weekdays and 10-2 Saturdays

Here's a link to the lobular breast cancer information from BCC which I hope you will find helpful along with further support ideas for you:

https://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-can...

https://www.breastcancercare.org.uk/breast-cancer-services

Take care
Lucy BCC

Bernie610
Member

Re: newbie lobular invasive :-(

Hello hope you don't mind me joining in? I'm having a really bad day each time I go for a result things change for the worse. I had a mammogram, ultrasound core biopsy the result was invasive nodular prov grade 2 receptive to oestrogin & progesterone. Plan was mastectomy & reconstruction straight away. Surgeon wanted a sentinel lymph node biopsy just to check before op as doing reconstruction. Had results today took 8 nodes 4 affected and I am stunned to be now told the type is actually lobular & need MRI, CT & bone scan my op planned for next week is canceled. I will need radiotherapy & chemo and maybe chemo before an op. No reconstruction now till later and as it is hard to detect and my family history is very poor they are concerned about my other breast again (they said this previously then changed mind). How can it completely change? I'm shell shocked and I'm worried that my HER status is going to change too. Really concerned about the other scans now and results. Hope you ladies are doing ok x
Alison_46
Member

Re: newbie lobular invasive :-(

Hi Sarah
What a nice surprise to hear your doing so well!
Would be good to hear how your doing I have 2nd chemo next week but doing ok. Tried the cold cap but honestly can't continue with it so wig fitting tomorrow & good supply of scarves at the ready!!
Are you going down chemo route?
Feel free to message me, would love to hear from you
Alison xxx

JETS
Member

Re: newbie lobular invasive :-(

Hi lala - I've delayed reconstruction decision for now. There was a definate sense of relief when they were gone so I identify with that . Everyone seems different on post op - I had good arm movement from day one and was very careful not to lift anything etc in esp first week as you need to be aware that there is muscle and nerve damage you can't see or maybe feel due to meds at the start. Buy a soft v cushion as you need to sleep on your back and will find it a godsend! I'm in more pain then others but had a particular situation post op - you will be fine xxx I'm sick to death of the exercises but you do need to do them as it helps stretch everything out. I've also has little electric shock sensations as the body has woken up more - it's fine though a lady on these forums said to rest your hand over the area and it really settles itx I showered in cling film for first week after going home in advice from bCN so get in some cling film too!! Please get in touch after your op and I will Definately hold your hand through everything afterwards! S x
lala77
Member

Re: newbie lobular invasive :-(

So interesting hearing about you guys experiences also. Jets how did you find recovery from bilateral?? Did you have implants?? I know everyone's different during our journeys but for me the had to go, even though I know there's no significant difference in mortality. My head will easier knowing they've gone. Thanks guy's xxx
JETS
Member

Re: newbie lobular invasive :-(

Hi lala I'm bilateral mx her2 negative hormone positive but still have referral about chemo possibility - I'm going to request oncotype dx test to assess the extra benefit of chemo x take it easy post bilateral and if u have any questions feel free to message me x sarah
Matty2
Member

Re: newbie lobular invasive :-(

Hi Lala

I was like you and had one boob removed. Now know no chemo or rads - hooray. But am on the hormone therapy for the next 5 years or so.

As my Lymph Nodes were clear I opted to have an implant, that was nearly 3 weeks ago 

 

All the best for Thursday

B

gazzlyn
Member

Re: newbie lobular invasive :-(

Wishing you all the best for Tuesday Lala xx
lala77
Member

Re: newbie lobular invasive :-(

Turns out I am Er + and her2-. No chemo unless theres any nodal involvement. They managed to get a free theatre space on tues, so going in for bilateral mastectomy. Quite good, not too much time too think. Consultant didn't want to take away both but I really pushed for it because lobular has an increased chance of spreading. Have you guys went for 1 or 2?? Hope you are all well xxx
JETS
Member

Re: newbie lobular invasive :-(

How you feeling Alison? I've has a right old battle with pain management but seem bit better last two days - oncology next weds x hope chemo goes ok for you ( as ok as it can x)! Get a bit lost on the threads so will be thinking about u x
Alison_46
Member

Re: newbie lobular invasive :-(

Hi Lala
Also hi to Sandie & Sarah (met in previous threads) lol
I was diagnosed in November with invasive lobular, had left mastectomy in December & start chemo on Tuesday. I am 46. Am afraid can't help re telling children as mine are 19 & 16, it was however one of the hardest things I had to do.
Think my 16 year old heard the C word and thought the worst.
Wishing you lots of luck, take care all
Xx
keepmumsane
Member

Re: newbie lobular invasive :-(

Ooo yeah. My girls asked some round about questions and I realised they were too scared to ask if it eas catching.  

Xxx

Herewego
Member

Re: newbie lobular invasive :-(

Hi Lala77, sorry to hear you've joined this club. Be prepared for a roller coaster of emotions which your kids will pick up.

I got 2 girls (4 and 1) and ended up telling the older one even before I had the treatment plan as she knew something was going on. I used the "Mummy's Lump" book from this site and she took it all in without asking any questions there and then.
She's seen my bruised breast and one morning wanted to touch the lump which was ok. She's also been very gentle with me since my op and gives me extra cuddles but we've also had teary tantrums that are totally out of character for her. It's just her way of coping I guess.

I've had the odd question here and there and last week she also announced at nursery that mummy had a boob op. Good thing I told the nursery right after we told her so they knew the situation but also to keep an eye on for any behaviour changes.

Good luck and keep emphasising that cancer is not anyone's fault and it's not contagious xx
lala77
Member

Re: newbie lobular invasive :-(

Thanks for your reply Keepingmumsane. Hope your chemo goes as well as it can. All for the greater good 🙂 xxx
lala77
Member

Re: newbie lobular invasive :-(

Thanks for those tips girls. Nice to know your not alone :-). Think I'll talk to the kids at the weekend. I downloaded the brochure from breast cancer care site on how to tell your kids which was helpful. I will tell the school, that's a good tip, thanks jets. xxx
keepmumsane
Member

Re: newbie lobular invasive :-(

Hi lala, 

Its a doozie isnt it. 

Im 45 have 2 girls age 10 &11. I was diagnosed in October.  had a masectomy in december,  starting chemo next week.

I quietly told them I have a lump.  It doesnt hurt. (They could feel mine under the skin it was large )

It had to be removed cos it will take up too much room.  

Then I'll need chemo , which will make my hair fall out for a while. 

I talked to them about pink ribbon fund raising,  they always buy a pen or something,  and how all that money means they know how to fix it as they studied lots. 

They had overheard a bit, one asked me in the car on the way to school if I had cancer ( swerve! ) as I too was waiting for the plan.  

Ive spoken to their teachers as well incase of school melt downs.

Got a lovely book called the year my mother was bald,  explains everything from a childs view point,  I learnt heaps too 😉 

Its so overwhelming,  my girls have been fine, they dont watch hospital dramas and they trusted what I told them.  

Much love xxx 

JETS
Member

Re: newbie lobular invasive :-(

Ps meant to add I'm lobular invasive ( 45 years) - there is light at the end of the tunnel!
JETS
Member

Re: newbie lobular invasive :-(

Hello lala - sorry that you have been diagnosed but like beryl says you will gets lots of support here x. I found this publication quite helpful
http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/talking-your-children-about...
My children are older 19 and 15 twin girls - but I did find it helpful when is told them - my bCN recommended telling the school also and I'm really glad I did as they have been alert to any difficulties for my girls ( especially as gcse starting) x I waited until I was going back so I could say " I've been told I've got cancer and this is what we are doing" but I have to say that things changed with more and more tests - so maybe it doesn't really matter when!
I try to be super positive for my children and have relied on this forum for my down days - i do find my girls are much more " tuned in to me" but you will prob be surprised how matter of fact children are. Sending lots of hugs and best wishes sarah
Matty2
Member

Re: newbie lobular invasive :-(

Hi

I am recovering froma one side mastectomy because of lobular Beasty

Sorry my children are all grown - didn't make it any easier in the telling though and my grandchild - much younger than your 2 we told I have a bad shoulder, made more sense to her and she was oh so gentle.

there are a couple on here who have told young children and there is a book/story i can remember they used which was helpful

I'll see if I can point them in your direction - if I can find them!!!!!

Perhaps they will find you anyway

 

All the best, don't be down, 

I always say keep smiling (very hard I know) but it helps. Do admit to yourself you are overwhelmed by this thing and have a good cry if you need it 

Keep popping in here I and many others find it a great source of strength and knowledge

Oh yes 

DO NOT GOOGLE

 

Regards

Beryl

 

Jo_BCC
Member

Re: newbie lobular invasive :-(

Hi lala77

 

Sorry you haven't had any replies to your  first post on the forums as yet, but hopefully someone will now see it and come back with some good, honest support.

 

If you need someone to talk to in confidence and in person, then please don't hesitate to contact our helpline team, they're here to support you.  0808 800 6000 lines open weekdays 9-5 nd Saturdays 10-2

 

Take care,

Jo, Moderator

lala77
Member

newbie lobular invasive :-(

Hello everyone.New to this. Found out last Thurs I have lobular invasive breast cancer. Find out this Thurs what the actual plan will be once all the results are back. I'm 37 and I have 2 gorgeous boys 12 and 6. I was thinking once I know the plan I might tell them next week to get their heads ready for it. Any good advice of telling kids???