second time around

Hi all , first time on here but just needed to talk really. I had DCIS low grade in Nov 2006 followed by lumpectomy and nothing else. Then in Jume 2009 I found another lump in same location. Had all the tests inc 3 core biopsys as kept coming back inconclusive and at that point I knew I had been here before. I am now 2 weeks post op this lumpectomy (wide local) inc removal of part of aerola, my nipple and milk ducts (most of). This time round it was intermediate DCIS and was 4.1cm wide and 2cm deep. I feel a little let down that it came back and looking back I wonder if the lumpectomy was enough at the time, but am thankful I found it when I did. I am waiting to hear if radiotherapy is my best option or tablets. I am worried of another recurrence even at this early stage, I am worried this thing will blight my life for many years to come and cant seem to move on Why? Has anyone been there too. Thanks Tracey x

Hi Trally1

Welcome to the forums, I’m sure other users will be along to support you soon. In the meantime you may find it helpful to phone our free helpline on 0808 800 6000 the lines are open again in the morning at 9.00 untill 5.00 and on Saturday 9.00 to 2.00.

best wishes
June, moderator

Hello Tracey
while not exactly the same place, I was diagnosed with a recurrence in June of this year, and share your feelings of dismay. Its an awful feeling to know that its come back, isn’t it? and to feel that it’ll always be hanging around you.
I was lucky enough to have a 12 year gap between a grade 1, 1cm invasive ductal bc and this one, which is still invasive ductal bc but 1.8cm and grade 3. I thought that I was unlikely to have it again so was shocked by the diagnosis and it has taken some getting my head round.
This forum is a really big help and source of support, kindness, advice and info and I hope it helps you as much as it has me. Keep in touch, and pm me if that would be helpful
monica xx

Thanks Monica, It’s good to know people are there to talk to as sometimes that’s all it takes. I hope ur treatment goes well for you and all is ok as you sound very positive. I seem to have lost me at the moment and am very pessimistic right now. Will keep in touch with progress report . Thanks Tracey xx

hi trally

i was dx with grade 1 stage 1 IDC with high grade dcis in april 06 and had a WLE plus re-exision for unclear margins followed by rads and tamoxifen when i was 37.

in may this year age 40 i was dx with a new primary in the other breast, grade 3 stage 1 IDC, triple negative with lymphovascular invasion… like you i only had 3 years disease free, currently having chemo (last one due next week) and then rads.

there is a few of us with recurrence/new primaries and it was a real shock at first but further down the line you get more used to it… although i would rather have a had a longer disease free interval and it does make you worry even more about it coming back and in my case being TNBC which has a higher chance of recurrence anyway… but in reality i would rather have had it when i was older (well not at all obviously LOL) and i sometimes wonder how long i have got which makes me just wanna get the most out of life.

so im just looking forward to finishing my treatment and going back to work and doing things i used to do and seeing my friends and colleagues…

and doing some new things iv become interested in and meeting the new friends iv made since getting BC… there are some positives like the wonderful people you would never have met if it wasnt for BC.

i found it all really difficult to take in at the start as i had my repeat mammo 1 week after the suspicious one and my results 6 days later with surgery the following day… so had very little time to process the diagnosis and am on anti-depressant which have really helped me cope with it.

best of luck with your treatment… i would say personally rads would be a good option to start with as that would be directly to the breast and hopefully zap any wee cells lurking in there… if its hormone sensitive then tamoxifen or AIs for 5 years as well would be a good second option… but discuss it with your surgeon and dont get fobbed off… write a list of questions before you go too and have aread around the information on this place to help you think what you wanna ask them.

take care

Lulu x

thanks lulu. i was 42 first time lumpectomy no treatment. im now 45 lost the top of my breast to this little nasty but i am thankful in some ways but im worried bout the grading. first time was low this time intermediate and of course a lot larger and it grew really quickly too. surgeon is opting for rads but needs to speak to onc first he did talk about tablets but as yet we havnt discussed further will prob see him again shortly or he will write to me. im still off work although i feel physically im getting better im still very tender much more than last time and psychologically i dont feel ready to take on work responsibilites and sometimes i feel like a fraud not working but i have a lot to think about. sometimes i just feel like crying but i stop myself does that sound silly? i know people are worse off than me so i shouldnt complain! my worry now is the travel to rads as its a 40 mile journey each way and i worry about the cost and being home in time to get my 5 year old from school all silly things but i cant tidy it all in my head. i feel so bloody stupid!! and i feel angry too that maybe if rads was done first time maybe i wouldnt be here again. all i hear is DCIS … oh dont worry its common but i do worry cos i know it can turn at any moment without warning and that scares me. thanks for chating i really appreciate it. hope ur feeling ok with chemo and everything goes well for you. i love your hair by the way its brill! keep in touch thanks tracey xx

Hello

I’m just getting over rads from my second recurrence. My first diagnoses was back in 1985 when I was 38, I had 20 years before my first recurrence 4 years ago. I really thought after all that time it was behind me. This time it wasn’t such a shock but was on the opposite side, hence being able to have rads again. I don’t think the thought that it will come back again will ever leave me now.

It must be hard coping with small children although they are a distraction, I’ve only got myself to look after apart from the dog.

All the best.

Jan

Hi girls,

May I just say how very brave you all are. It takes a lot to cope with everything BC related. I’ve had the dreaded BC twice too, Grade 1 BC in Oct 2005 with WLE and Lymph nodes removed followed by Chemo and Rads. Then dx again Feb 08 with new primary, same side, practically same area, Grade 3 with DCIS. Had Bilateral mastectomies (other side thankfully was disease free) with immediate implant reconstruction. Then had the Chemo but couldn’t have rads again as it was the same side and similar place. Now after my last recon op in Feb 09 i’ve got a small hardness, lumpy area in my scar right around the same place as both cancers were. I’m terrified. I keep being told that recurrance rates are extremely low in the 1-2% region but after a physical exam by my BC nurse I have been told that although she doesn’t think it feels like a cancer, I need a scan to be absoloutely certain. I didn’t think i could get it again after having all breast tissue removed but yep, you can get it in the scar. I honestly feel sick, I’ve got an ultrasound scan booked up for 10am tomorrow morning and I’m dreading it. In a weird, selfish way I’m so scared to go in case they find something else that I feel like NOT going. Logic tells me I have to. Thing is this area has always been tender (had 7 surgeries in that area, there has to be scar tissue and it is ever likely to be sore to press on), its just that i have noticed its more sore lately and now cannot lie on my side as its too uncomfortable. That cloud just follows us doesn’t it… trying to be strong but terrified… Has anyone had anything similar??? Love to you all… Emma x

Emma I know exactly how you feel, when cancer was found in my lymph node on the opposite side to the previous times I had to have a bone scan and CT scan and I was terrified of what that might show up.I felt well and found it hard to believe anything could be seriously wrong. Fortunately they were clear but waiting for the results was the worse 2 weeks ever.

I have to have another small op and again they say any tissue will be sent for analyses, like you I don’t want any more tests, whats the saying “ignorance is bliss”, quite right.

Good luck for tomorrow but its not the tests that are the problem is it, its the results.

Jan

Hi Jan

Thank you for your reply. You’re absoloutely right, it is the results that’s worst. I am dreading the scan too, the radiographer is very good and you know how it is when you study their faces whilst they scan you… how silly really. The worry and anxiety is awful. Just wish we could all be free from this dark cloud that seems to hang wherever we go.

Good look for your op, when is it?? I really hope all goes well for you x x x

Hi Emma and jan. I think you are both far braver than me and just listening to your experiences makes me feel stronger. Good luck to you both and I mean that sincerely xx Tracey

well i found out today my radiotherapy sessions will be everyday for 5 weeks - 25 sessions. It seems a lot but have been told it will give me a 2/3rd better chance on non recurrance so lets do it! got planning appt next week so lets take it day by day xx

trally

i think 25 rads is fairly common… thats how many i had first time round and the same amount im going to be getting this time on the other side… but luckily im only about 30 mins away from hosp.

40 miles is a long way to travel every day though especially as rads can be so draining… some units have accommodation but that would only be useful if you could get some child care arranged… but one of BC buddies would come to the accomodation in time for monday rads and then go home after friday rads to spend the weekend with her family… maybe yours has something similar.

millsy

any news on your test results yet? keeping my fingers crossed for you.

Lulu x

well 2 days of rads left feeling depressed, tearful, hate my husband cos he cant do anything i want him to, hate the way i look too! my boob has a brown tan, my aerola has gone pink and blotchy, i have brown spots and bruise like blotches everywhere on my breast, my skin has peeled underneath and i feel crap! is this normal for me to hate myself like this will it ever be normal again! please someone tell me x

trally have you seen your gp about how you are feeling? they can maybe refer you for counselling or prescribe medication to help you feel better.

my bcn has just referred me to an oncology psychologist and planning to my gp in case my ant depressants need upped.

its hard cos your emotions will be all over the shop.

you can also call the nurses here at bcc on 0808 800 6000 to have a chat about how your feeling.

if your on medication already it could be that its needing to be adjusted.

like you i have a blotchy sore pink boob and although its uncomfy at the moment it is only temporary and will recover in time.

sending big hugs

Lulu x

thanks lulu - no im not on medication but feel so bloody low all the time but am trying to be cheerful!i now have large blisters that are weeping and i look like i have blackheads all over my breast. god i know i shouldnt moan but after having this twice in 3 years i feel like its never going to go away and i just want to look fairly normal again as i think that will make me feel better. i dont want to go on anti depressantsas i want to get back to work but as time goes on my plans seem to go out the window. The cream doesnt seem to help it just makes the sores sorer if that makes sense. maybe i should visit my gp for a chat but i dont feel very optimistic if im honest. thanks for replying i appreciate it

love tracey

hi tracey i think speaking to your gp is a really good idea, perhaps she can recommend some different cream too that will help with the broken skin. do you not see a radiation nurse specialist at your unit? we have one who advises on skin care and care of broken skin and wounds.

i hope you start to pick up a bit soon… dont be put off taking antidepressants if you need them they arent a long term solution but help to deal with the day to day issues until your well enough to deal with it emotionally yourself.

mine have just been increased after being diagnosed with the brca 2 gene and being told id gone through the menopause :frowning: and all the issues they bring with them.

anyway i hope your feeling better soon hunny.

Lxx

Hi Tracey

Just been looking through the different threads and came across yours. I thought I would let you know about my history. I had low grade DCIS in November 2005 and had a lumpectomy followed by 4 weeks of radiotherapy and was told I would probably never have another thing wrong regards bc. However, November 2009 and I had my routine mammogram which uncovered a Stage II IDC. It was virtually in the same place on the same breast. However after tests they said it was a brand new primary cancer and I had been unlucky. I since had a mastectomy and lymph nodes removed in December/January. I’m now on chemo for 6 months and then tamoxifen for 5 years. My consultant explained about genetic testings and I’m swaying towards it. I’m also having the other breast off after treatment as I don’t want to be constantly feeling the breast for slight changes for the rest of my life. Having said that I understand from commments on here that it can come back in the scars. God its a worry isn’t it!!!

Hope your doing okay and take care

Krissy xx

Hi All,

I am afraid I have been a lurker on this site,building up the courage to post. In 1990,I found a small lump,and had a lumpectomy and six weeks of rads. I must have buried my head in the sand and never gave it a thought that it would rear its ugly head again.
At the end of last year,I had my three yearly mammogram,and for the first time was called back for a second appointment. A lump had shown up in the same breast different area,so mastectomy this time.
I am now three weeks post op,the tumour wasGrade 2 and clear lymphnodes. I have an appointment with the onc next week to discuss treatment. The problems I am having is the numbness and prickly feelings in my right arm. I am also finding that people who I thought were my friends have disappeared. I am so happy to have a wonderful caring family.

isnt it funny how some so called friends desert you when you need them most.

sorry to hear of your recurrence, but glad you found us here… its fab that you made 20 years without a recurrence although sorry its come back at all but at least as you say you never gave it another thought so its good to have had a life between the first tumour and now.

i had numbness for ages after surgery but no prickly feeling just itching which drives me mental even now after almost 4 years.

good luck next week at your onc appt.

Lulu x