4mm area of dcis biopsy but already in sentinel node- is this common plus hiw to cope with Asperger child while on treatment

[lamonsea]

I had routine mammogram march identified calcification are 4mm size. Biopsy diagnosis dcis in april. Lumpectomy in may changed to lcis and results late may found invasive cancer in margin. Back for op last week for re excision of margin plus sentinel node biopsy. Intra op analsys found macro metastasis in first sentinel node so they did full axillary node removal.

I am still in shock over how something so tiny found in march has already made it to lmphy node. Orig was tild just need radiotherapy but now im really dreading results this week as my 13 year old daughter does not cope with any illness around her but as she has aspergers , anxiety and adhd she looks to me for everything. I just dont know how we will cope if i need chemo as they only have me and my partner is not their father and they don't accept his help generally as it was just me for so long before i met him.

Has anyone else had such a small area with invasive cancer in lymph node that quickly and what treatment was needed?

Also does snyone have experience coping with treatment and an sen child plus other with frysttations and sensitivities due to asperger one effect?

[Debs1962]

Hi sorry to hear your diagnosis it is a shock, we all know how you feel on this site.

What type of cancer have you got? ER+ ? When they do surgery they will have given you a report, get your doctor to explain what it all means, as certain bits give will give speed of growth, slow growing etc.

I was dreading telling me children, I know a friend of mine whose son was only 8 when she had cancer, told him his response was well as long as you don't lose your hair! But she of course did! He was fine with it when it happened, she wore a wig. You will come through it, and sometimes children cope better than we imagine, even special needs ones.

What surgery will you have? Mastectomy or lumpectomy?

Good luck with your treatment, I had mastectomy then tablet hormone treatment. Xx

[lamonsea in reply to Debs1962]

Thanks for the reply. The only info i was given after first op duscharge report says LCIS and that i had lumpectomy. The second op report just says. Breast cancer and the procedures done including full axillary clearance. I only know sbout first lymph nide as well asked. Ni ine gave me any other report at all. I fud ask about the Er status first time and was told ER+

I will ask them for the full reports Tuesday

[Hidden]

Hi there

Firstly sorry you find yourself with this disease - one thing you will probably find is that no-one will have the same diagnosis etc as you , there are so many different factors with breast cancer. I am guessing the fact chemo hasn't been mentioned before means you are probably not HER2+ or triple negative as these two invariably are treated with chemo wherever there is lymph node invasion or not. It will also depend on the stage and grade of your cancer - and whether analysis shows spread to more of the lymph nodes that were removed.

However , we all have to accept or decline our treatment , chemo may be offered to you but is your choice whether to have it or not and weigh up the pros and cons , at this point you are second guessing - wait and see what your results are and then take it from there . In terms of the quick spread , it may not be the case at all, not all cancers are picked up on mammograms or ultrasound so it may have been there for some time but been hidden by the DCIS.

I had chemo and mine was okay , I didn't feel too ill at all , everyone is different and often people come on the these forums when they have problems , not when everything is okay.

Hope this helps a bit , I am sure you are in panic mode at the moment , but once you have your results you can begin to take control a little more again.

Jo x

[lamonsea in reply to Hidden]

Thanks for your reply. I told my children after the furst duagnosus of dcis. They were ok about that as at that time i was told i maynot even need radiotherapy. They both gave said i cant have chemo though. My asperger daughter does not cope with change in my appearance even when i tried contact lenses etc. She also hasnt attended school since easter due to being bullied and is now waiting for her ehcp to change the school placement so that will be hard s for her too she is year 8 and hasnt even chosen options yet.

I already have niw had 2 lumpectomies as that was what was recommended plus at second op the full axillary clearance.

Just hoping ni cancer in the margin this time or in orger lymph nodes

[Lainey66]

Hi there, I was diagnosed in 2015. Initially there was only a tiny tumour however there were a couple of small tumours hiding deeper in the breast and were identified through an mri. I had chemo, then a double mastectomy and full lymph node clearance in Jan 2016 then six and a half months of chemo followed by 25 sessions of radiotherapy. My daughter had already left home and is living in another country, I had my husband here and my two sons. My oldest son was just 17 at my time of diagnosis and my youngest 15. My oldest has high functioning autism, dyslexia, dyscalculia and high anxiety. My youngest has dyslexia. Both boys always look to me for everything even though their Dad is there and they are close to him, Mum is the go to person. I sat both my boys down and told them what I had been diagnosed with, explained that I would need them to be strong and helpful and to listen to Dad as I would not be well enough to do everything as I usually do. I explained to my son with ASD (He was aware that cancer is and can be a killer) that I was going to do exactly what the doctors said, that I would fight this as much as possible, that this was a time where I needed him very much. That I needed him to be strong. I had already spoken to his year head in school, his resource teacher and his class teacher, I asked that an eye be kept on the boys and that if need be they could arrange some sort of counselling through the school. I asked them to be discreet in the manner in which they handled it as neither boy likes intrusion from outside in their lives. A support network was now put into place. I told both boys that I had spoken to the school and that they would be there to listen if either if the boys had worries that they wished to talk about. My oldest son says very little at the best of times so a closer eye was needed on him to stop him internalising everything and building up stress and depression. I explained to the boys that there would be times when I would look and feel very ill, that these were the times that I would need to rest and sleep. During the times I was strong between chemos we would plan a trip out - anything from a cinema trip to lunch out or to places of interest. Although my husband works full time six days a week, he did what he could and would come home and cook the tea when I was at my worst. We live about 30 miles from my boys school, the school was amazing and two teachers who live in the next town arranged to take turns transporting my boys to and from school this was a massive help. In Feb 2016, we had another blow, my husband was taken very ill and was hospitalised with crohns disease, he then endured surgery to remove a large part of his intestine, this came as a blow as now both parents were "out of action" so to speak. I taught the boys how to pay the bills online, we also then learned how to use the tesco online shopping for groceries. Both boys did home economics too and brought their recipe books home and took turns to cook. My son with ASD took responsibility of the washing and ironing My youngest son busied himself by making a medicine tick chart for me and organising times I was to take them, both boys sat together and devised a chores plan and one week one son did the upstairs all bedrooms and bathrooms while the second did all downstairs, kitchen, dining room . Sitting room, guest toilet and sunroom. They vacuumed and polished. My youngest helped his older brother too. Then (my oldest is terrible at homework for school) they devised a timetable for homework. It ran smoothly. (We also had fairly big shopping bills 🙄 From the online grocery shop) both boys together ran our home, they surprised us all so much and even worked harder in school - all despite both of their own difficulties, they both completed their leaving certain this year. There has sadly been a knock on effect on my son with ASD. Since things have started improving and both my husband and I are now able to take on our roles again, it is as though there is a delayed reaction to the last two years of 'hell'. He has developed depression, a worrying level of depression which we are all dealing with at the moment. We are lucky now to have sourced a personal trainer for him and support from our GP and Pieta House who advise families and counsel those who are thinking of suicide, it is not easy but we are making in roads. Thankfully he is talking more and will be joining his Dad in work while my youngest has chosen to go into healthcare in college. Be prepared to have to sit patiently and explain everything to your child, if you don't and things turn out for the worse it could have devastating consequences, sit and think of all the support networks you will have to put into place, have them up and ready before any treatment begins, go to the cancer support services as they provide counselling for your children too. Encourage your child to ask questions and to be part of your recovery plan, I allowed mine to take turns in coming to chemos if they wanted to. When I stayed in hospital for radiotherapy I arranged that they could be show where I was being treated, what happened and how it worked. If you keep your daughter informed have plans of action it should go smoothly. Arranging all this and planning ahead kept my mind off time woes and I am certain played a huge part in me getting as well as I am. Well I am heading off with my three men now! It is a beautiful day here and we are off to go and enjoy a day out together. I taught children with autism prior to my retirement last week. Message me if you think I could be of any help to you. All the best, take each day as it comes and stay strong. Lainey xxxxxxx

[lamonsea in reply to Lainey66]

Thank you Lainey. Wow you sound so well organised. I am diagnosed asperger too and in terms if support network i dont really have friends and find it hard to siciskuae generally and even when i tried at toddler groups i ended up sat in my own then too. I will think about how uou managed it but may struggle to fo this myself so may well be messaging you in near future. Thank you so much. Unfortunately schools have not been helpful with my older daughter at all apart from the small primary school she attended in year 6, and even there she got blamed for messing up the computer and losing all the info for the leavers assembly as she apparently twiddled the power lead that went into laptop.

She also diagnosed as adhd too, and given my lack of impulse control especially with her teachers ir anyone not helping ir understanding her and way i intertupt i think i am the same.

Its a very tricky time.

[Hidden in reply to lamonsea]

Wow you are both fantastic women to be coping with all this - Lamonsea I think Lainey has made a really good point there , there are fantastic charities around to help with all sorts of issues , in my local area I could have a free holiday by the coast for us all , free rides to and from hospital , free makeup sessions and beauty sessions , holistic treatments and also there are lots of different counselling sessions for both you and your children. You won't be the first person in your situation they have come across. Whereabouts in the UK do you live ?

The other thing I was going to say was that pretty much the only thing that changes to the outside world with chemo is losing your hair , however if you use the coldcap this can reduce this dramatically - if you are offered chemo you should ask about this. I have a link somewhere to the company who make the caps and there is a lady in their site who is a regular contributor to another help site. I will post it for you if this is what happens.

Good luck on Tuesday , please dont feel alone, there are lots of people out here who can support you , even if it is from a distance.

Jo x

[lamonsea in reply to Hidden]

Thanks Jo. I am on the south coast between bournemouth and Southampton. I will go into macmillan unit after my appt tuesday and see what they can suggest. Thanks again.

Lesley

[Ursula_I in reply to lamonsea]

Hello again Lesley

Don't know if you know of them already but Rose Road might be able to support you with your and your daugher's needs, they are an excellent organisation

roseroad.org.uk

[Ursula_I]

Hello lamonsea,

Everything goes at such a pace, it's hard to get your own head round it let alone keep going with family etc. It's tough but you will get through it! I was diagnosed a year ago, stage three, large tumour so immediately entered a whirlwind of treatment starting with chemotherapy July-Nov. Then surgery (inc axillary clearance) and radio and I'm still receiving herceptin plus hormone drugs.

Anyway my situation is bit similar to yours in that I have a 16-year-old son with Down's Syndrome and Autism as well as three other children. I can't lie -- it's been really tough for him. I lost some of my hair (cold cap so kept a lot - yay!) and can no longer dye it so it's short and much greyer 😭. The change in my physical appearance has upset him as much as the hospital trips, sickness etc. Such a minor thing in the grand scheme of things but it has really affected him - he's desperate for me to get my 'real hair' back!

I'm not going to go into detail here but we have had lots of help from my son's social worker and school. If you haven't got a SW I think you can self-refer. It may be that your daughter would qualify for a "Child in Need" section 17 assessment. Her school also might be able to advise. In general we have tried to keep things the same for our son as much as possible... this has been tricky at times 😀.

In terms of coping with your own treatment, accept as much help from friends, neighbours etc as you can. We had lots of kind friends making meals, walking the dog. I also organised a rota for people to sit with my son if he refused to go to school on the days I had radiotherapy. It worked well. You will find people are only too eager to help!

Try and look after yourself as much as you can. Things can get overwhelming. Take it one day at a time! Counselling can help - maybe a bit further down the line. In our area there is a specialist counselling service for families of children with special needs who have some wise and kind people working for them.

The autism service in your area might also be able to offer support.

All the best... look after yourself and your precious family... actually, also let others look after YOU.

XX

[lamonsea in reply to Ursula_I]

Thank you so much for your reply and information

[SurreySurvivor]

I have a son who is severely autistic and nonverbal. I tried my best to make the big changes as fun as possible. It can be really hard, but he did pull through it. Every child is different, but I'll give you an example. I let him help shave my head when my hair started falling out. Then I have him a box of non-toxic washable markers to draw whatever he wanted on my head. Some days I was like Charlie Brown. Other days I looked like a member of the Blue Man Group. But, it worked. ☺️

[lamonsea]

ThAnk you for sharing that. Unfortunately not so easy as that but at least my younger daughter has said ok so long as i wear a wig when I take or pick up from school etc. Still having probs with asperger daughter and not in school and new mainstream one in September too. To top ot off, have so far had two lumpectomies and they noe realised its invasive lobular cancer snd ine node affected so sll underarm nodes removed too. Now awaiting ct scan and mri results on 24th with op posdibly on 31st mastectomy and who knows what after.