I had a brush with DCIS back in 2004 but thankfully all was sorted. Found a lump in my other breast just before Christmas but told myself it was noting, finally went to Doc last Friday was fast tracked to Hospital and seen and tested on Wednesday, it is cancer and it has spread to my lymph nodes. I am terrified. I have to go back on Monday to discuss my treatment. Which will include Chemo this time. I am frightened I will lose the full use of my right arm when the lymph glands are removed, I don’t mind so much about the hair. Please can anyone give me some light at the end of the tunnel. My poor husband has gone completely to pieces, it was his birthday yesterday and only a few years back his Dad died on his birthday, so he is really low now.
Hi Nonny
I can understand that you feel very frightened at the moment following your recent diagnosis. You may find our helpline useful to call, it is run by specialist breast care nurses who can help you through this difficult time, listen to your concerns and offer information, advice and support.
They are on 0808 800 6000 and open Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm.
In addition, Breast Cancer Care have published a Resources Pack which can be ordered on line, it is filled with information to help you better understand your diagnosis, test results and the various treatments available:
breastcancercare.org.uk//content.php?page_id=7514
I do hope you find this information of some help.
Kind regards
Louise
Hi Nonny,
You must be in absloute shock at the moment, but maybe I can offer you some encouraging words.I had a WLE in November 2006. No node involvement which they conformed by removing them all under the arm of the side of b/c , which was on my right side. My arm is fine. Movement is fine. No Lyphodema. I avoid lifting anything heavy on that side, but swim and walk regularly.
Chemo will not be as bad as your imagination is telling you it will be. My hair fell out but now I’m sat typing this with a full head of hair which has grown back quickly. Side effects during chemo are usually very treatable and can be managed. You did exactly the right thing in getting your lump checked out and now you are going to be sorted out.
Janeyb
x
Hi Nonny
I was dx with IDC in November last year and had mastecomy with full node removal. By December I had full movement back in my arm and as with Janey - no lymphodema. I too avoid using this arm for any heavy lifting etc but also exercise regularly which helps.
I am currently half way through my chemo and again as janey says - at present it is a fear of the unkown - it is do-able and your breast nurse or chemo unit will give you all the help you need to combat any sde effects you experience. I lost my hair roughly 16 days after first treatment, and now have a light covering of ‘fluff’ all over my head - again it was a shock at first - but I’m quite used to it now - it was in some ways very liberating.
There are some great booklets available on here for helping your husband and yourself to cope with your diagnosis - I sent for them all the beginning and we have slowly worked our way through them. I truly believe that my husband will never completely understand what I am going through - you have to experience this thing first hand to know that - but at least the booklets have given him some idea of why I’m like a bear with a sore head one day and bouncing off the walls the next !
Please keep us updated with your progress - we will all be here to support you
take care
margaret x
Hello Nonny
Sorry to hear about your diagnosis. I was diagnosed in Dec 06 and had WLE and full axillary clearance. The tumour and node clearance was on my right side and I would describe myself as very right handed - I don’t find it easy to do things with my left hand.
However I’m doing fine. I have to be careful with my right arm which means remembering not to lift heavy things, using high factor sun cream, a good insect repellant, wearing gloves for gardening, washing up etc. It is completely ‘doable’. In fact I have mild lympoedema in my affected breast but my arm itself is fine.
I lost my hair on chemo but it’s back now - I have about 2 inches of thick healthy hair.
Good luck for your appointment next Monday. Let us know what happens.
Take care
Anthi x
Hello Nonny,
I had a right mastectomy & level one clearance in March. I would say I didn’t get full range of movement back into my arm until I could swim again after chemo was over, but it wasn’t far off full movement before that. The swimming has really helped to strengthen my arm, and it hardly ever aches now. Like the others have said, I am careful with my right arm, try not to over use it, and do not carry anything heavy in it. I think my left arm must be getting a lot stronger! I have also taught myself to iron left handed, although I swap to my right for the fiddly bits. Also, I have swapped the mouse on my work PC to my left hand - it felt very odd at first but I got used to it very quickly, and am now completely comfortable with it.
Immediately after the operation you will have very limited movement in your shoulder - it’s best if you can take front opening clothes to hospital rather than things to go over your head as this is easier - but don’t worry - the movement soon returns as long as you do the exercises. I estimate I had 95% movement back by six weeks.
Best wishes
xx
Thanks so much everyone, it’s great to have so many positive replies. I’m beginning to get over the initial shock now, but still feel sick most of the time. I wanted to lose a few pounds after Christmas and this will certainly do it! I’ll be in touch next week when I know more. Thank you once again for all your support.
Nonny
hello Nonny
I had mastectomy with reconstruction and axillary clearance in 2001 and my arm took a while to recover…but it did. I was quite restricted when I came out of hospital and had cording when the old lymphatic vessels tighten up…it feels like string under the skin and it went right down to my wrist. I asked to be referred for physio and she hauled me around for a few weeks stretching it up and I really persevered with the excercises which are so important plus regular swimmming and within a few months I was grand. As everyone else says you need to be gentle with it and protect with gloves, sun cream etc and keep it well moiturised and it will be fine. Good luck with it.
Love Annie
Well, here I go. I was offered either surgery or chemo first and I decided on chemo. I start chemo next month, (goodbye hair!) for up to six months to shrink the tumour. I was offered either a mastectomy or it could be possible for a lumpectomy if it shrinks enough. I think I am going to ask for a double mastectomy with implants. (Eat your heart out Jordan!) I don’t ever want to be in this situation again, once was enough, twice is unfair, so if I have no breasts I can’t get breast cancer! Anyway, that’s how I feel at the moment. I now have to tell my two daughters, 35 and 33 who live up North about 250 miles away, I live in Cornwall. There is no easy way and I am trying to think how best to go about it. My husband has really gone to pieces, but I am hoping as he gets used to the idea and we get into treatment things will improve. Thank you again for all your positive support, I really appreciate all your help and advice.
Love to everyone
Nonny
Nonny,
Sorry to hear you have to have chemo. It is not a pleasant experience, and not one I want to repeat, but it was nowhere near as bad as I had feared, and I think most people would say the same. The worst thing about it is that it goes on for so long, and it is often hard to see the light at the end of the tunnel. However, take heart, as you will get through it and this time next year you will be through it all and have hair again. I am currently four months on from chemo, and coming tantalisingly close to being able to remove my scarf.
My best advice? Take any help you are offered, and be kind to yourself.
Best wishes
Hi Nonny - sorry to hear about what you are going through. I am also on 2nd time around - had WLE, chemo and rads in Sep 03 and then High grade DCIS last summer. Had one mastectomy last Sep and booked in for other one in March. I feel the same as you - double mastectomy - not giving it a chance to come back again easily. I feel better already after first mastectomy and my recon looks really good.
Chemo is hard but doable and as long as you do exercises and look after your arm it should be fine. I had 2 layers of nodes removed and chemo and rads and have gone absailing and all sorts still!
Take care and just take one stpe at a time.
Sarah x x x
Waiting for my first Oncology appointment. I know it’s only been six days but the waiting is awful. I keep imagining all these cancer cells buzzing around looking for somewhere to to start up a secondary. Have lost 5lbs in six days! Not a diet plan I would recommend. Thanks again for all the kind words and suggestions, I will be back when I know more.
Jennie