we are waiting for your post to appear… no idea what surgery you have had etc… i am just hoping you feel ok
I have posted this for a new user
Jo, Facilitator
I was diagnosis on the 16 th July with Invasive Lobular Carcinoma & have just had surgery on the 8th August, having a Wide Local Excision & Axillary clearance.
Everything is happening so quickly I can’t seem to get my head round what’s going on and I’m so scared about what’s lies ahead (I’m sorry if I sound silly). I meet with the Oncologist next week to find out final results & what treatment I shall be having. I just feel at the moment mylife doesn’t belong to me.
Hi,
First of all, you don’t sound silly at all just very normal.
Everything seems to happen at such speed that very difficult to think straight. It is scary, and because you are facing a situation which you probably haven’t faced before, everything is new and you don’t know how to react.
Many of us on here have been where you are now and some are at your stage.
I was also diagnosed with Invasive lobular Carinoma but due to its position under the nipple had to have a mastectomy just before Christmas and axillary clearance.
Waiting for the final results and the treatment plan is a difficult time. Do keep in touch and let us know what happens. There is so much support and info on this site.
Best wishes
magsi x
Hi there,
Sorry you are in this situation love, it stinks eh? The waiting is the worst, I had the same as you in May and those 2 weeks felt like a lifetime. Hang on in there and I hope some of the others will be along soon to offer their support.
Take it easy and try not to worry too much
Big hug
Hayley x
Hi HayleyBayley &magsi
I would like to thank you both for your support and will keep positive.
Many thanks
Mole
Let us know how you get on Mole won’t you.
All the best for the results, have you got someone to go along with you? most people find it helpful if they have a second pair of ‘ears’ as it can be difficult to take everything in.
Also if there are any questions you think of, write them down or you may find it hard to remember them at the time.
And there are no silly questions, if it is a concern for you then its important.
You can ask for a copy of the report which I did and have since found it really useful.
Magsi x
Hi Mole,
How are you getting on? Bet you are sick of that question eh? Hope you are doing OK.
Love Hayley x
Hi Magsi & Hayley
Sorry for not replying sooner but I’m still trying to get my head round the results,
Tumor was 3cm (surgery successful) 17 Lymph nodes removed 4 had cancers. Oncologist wants me to have a CT & Bone scan before I start treatment which will be chemo for 6 months & then Radio every day for 3 weeks & typical of me the hormone test showed i was neither postive or negative so they’ve said i will have to have hormones for 5 yrs.
My husband, 2 sons & friends have been great but they seem to want to take me out(I thinks they are trying to fatten me up, big enough already). I know they mean well but sometimes I just need time on my own, am I being selfish?
Luv
Mole
No you are not being selfish mole, everything takes time to sink in.
We are all different, some of us appreciate having lots of people arround and others prefer to be left alone to sort things out.
Prehaps you can suggest ways that family and friends can help you in ways that you need.
When I was having rads a friend suggested that she came with me every day on the tube, which I really didn’t want, as I preferred to go on my own. So I suggested that perhaps we could meet for coffee afterwards which would give me something to look forward to. In that way we were both happy.
Keep reading the various threads won’t you as you will find support especially on the ones which are specific to you. And post on them if you need help and advice . There will always be someone who is where you are at or a little ahead of you in treatment.
Take care
Lots of love
M x
I was also diagnosed with invasive lobular cancer, and first had a mastectomy on July 3 with the sentinel node test, and then had to have the axillary clearance on Aug 8. Luckily only one node was affected. I’ve had a really sore arm since, with some cording in the lower inner arm. It’s discouraging that even if you do the exercises, arm still stiffens up again. ( keep doing them!) I’ve had the wound area drained twice, and am going to see the Breast Care Nurse tomorrow as I have an area of redness below the wound. Also I’m going to see the oncologist tomorrow. Was told right from the start I’d need chemotherapy and it’ll probably be FEC, but I’ll keep you posted on what is decided tomorrow. I’ll need 3 weeks radiotherapy, and then probably Arimidex as I’m post menopausal. Hope we can support each other if we’re going through similar treatments.
bump
Hi rockrose,
How did you get on with your oncologist?
I’ve also had a lot of pain in my arm and have been doing the exercises but I have also found that rubbing in Natural moisturiser has helped and it has started to get easier.
Have seen BC nurse a couple of times just to check on wounds & have been lucky that it didn’t need to be drained but it still felt swollen, so she suggested massaging area with oil/cream which I have done & it seems to be improving.
Would love it if we can offer support to each other and anyone else who would like to join us.
Take care
Mole
I would like to join your support network. I had a mx june 25th (it was 6cm) and 4 nodes sampled which all proved to be infected so went in on 22aug for full lymph clearance. I get my results on Tuesday but know whatever the result i need a minimum of 7 chemo sessions, poss rads and then hormone treatment for 5 years. My wound site started oozing but feel this was due to me over stretching however it stopped then started again. BC nurse felt it was a small seroma and body had found a way of getting it out. My wound is not sore but what is is the under side of upper arm - sore to stroke and if anything rubs it agony. My leg is also suffering from the same symptoms as well as shooting ppain as this was the exit site for the cauterising of nerves.
Hope you are not too bad
Love Sharon xx
Hi Sharon, I had a double mx and 4 nodes one side and 3 the other out, (not infected), on July 23rd and my arms were the same as yours, they are getting better, but some days are worse than others, I sometimes wonder if they will ever be normal again