DCIS - 28 years old and scared

[Ali49]

Hi Michelle how are you? How did it go with your consultant? Think8ng of you x

[MichelleHx]

Least that is something and be ready for 2017. I think also have worries of an anticlimax as everything has happened so quick and guess thinking consultant will say, see you in a year with tamoxifen and not sure ready to deal with that. Looking forward to getting lots of answers today and using my persuasive skills. Been waking up with a bad back for the last few mornings too, guess might be compensating or whatever. Feel better after appointment. X x x

[Ali49]

No I am really lucky. The hospital, Aintree in Liverpool, is just 15 minutes away in the car from me and a 10 minute walk from my mums so I could even Park and walk.
I think the down days come because of loss of control and frustration at life not being normal. You are definitely allowed them Michelle! You have been through a lot!! A good cry sometimes does the world of good and helps to release some stress. Hope you feel better tomorrow.

Good luck tomorrow, I hope you get answers and good news. Let me know xx

[MichelleHx]

That's great that get a break over Xmas period. . I don't why feeling down just had tears with mum. Best news not needing chemo buy so many questions that want answering and although I really want the other boob off I doubt they will do that but will know more tomorrow. Small little dots to show the journey you've been on. Have you got far to travel for radiotherapy x x x

[Ali49]

The tattoos are 3 small dots on my skin to mark where the best or lasers (whatever they are) will go for my treatment. They are tiny but permanent so they will always know where I have had radium. I also had a ct scan of my chest, lying in the position I will be in for treatment. This helps them to know where the dots go! All quickly done by lovely ladies xx

[Ali49]

Hi Michelle, glad you aren't having chemo but sorry you are having a down day. I have been struggling with my back but as my gp said I am not as active as I usually am and have been through a stressful time. Got my dates for radiotherapy today - start on 7th Dec and finish on 30th - with a break for Christmas. So all done for new year and hopefully a return to work mid January. Hope your consultant gets you sorted soon and will do the other mastectomy for you. When do you move house?
Teresa thank you for telling me about your experience of radiotherapy and for reassurance. I am using aqueous cream at the moment so I'll ask if that's OK when I go. I hope you've recovered well xxx

[teresas]

Hi Ali49 I was diagnosed with Dcis around March time following recall from a routine mammogram. I had a core assisted biopsy, a vacuum assisted biopsy and a Wire excision on right breast plus another 2 re-excisions before I finally got clear margins. Because a large area of DCIS, grade 2, it was thought best for me to have 15 sessions of radiotherapy which I finished in August. I found radiotherapy fairly easy, just a little sore which I was given medid honey for. I started moisturising my breasts twice daily prior to the radiotherapy and continued with this throughput the treatment. I used E45 intense recovery. Also I drank water at every opportunity. I found AllClear covered my travel insurance but not until 3 months post surgery. An awful lot of other companies wouldn't cover me and if they would then they wanted to charge a fortune. I am 67 years of age and after disclosure of the cancer treatment it was under £300 for a couples European (including Spain) annual policy. I haven't bothered taking out life insurance though.

[MichelleHx]

So will you be done by Xmas? My consultant rang yesterday so say my results in and I wouldn't benefit from chemo which is great news. Seeing her tomorrow to go through treatment plan which will be tamoxifen really want the other breast off as feeling imbalanced and want to get on with life and don't want potential hiccups when we try for a family in 5 years hopefully....having a low day today. Last few days waking up with a lower sore back. Seems to always be something looking forward to seeing consultant so many questions. What do you mean having scan and tattoo?? Xxx

[Ali49]

Had apt with oncologist on wednesday and planning scanvand tattoos today. All ready to start radium in next 10 days. Such good care and lovely people every step of the way! Hope you are doing OK Michelle xx

[Ali49]

Hi Michelle, glad you are OK. School advertising for a teacher takes the pressure off you thinking about going back so you can relax knowing your kids are looked after!!
I have apt with oncologist tomorrow so hoping he will tell me when the radiotherapy will start. I am hoping it will be next week and finished by Christmas but I really don't know. I will let you know!
Hope you get you set soon and can get your treatment started. Did you move house?

[MichelleHx]

Any news when starting radiotherapy, someone I met yesterday who went through it all 4 years ago and is now 30 said radio was a breeze just sore skin. Xx

[MichelleHx]

Morning, doing okay still no appointment will be 2 weeks this Thursday since the news so will ring soon if not heard. All a bit strange as my school has advertised for a part time teacher even though I could be back, so strange knowing life goes on. How are you x x x

[Ali49]

Hi michelle how are you? How are you healing? Did you get your apt with oncology yet?

[Ali49]

Glad to hear you are staying positive Michelle. The getting back to normal is a craving I think we share. Wanting to get back to work and a 'normal' routine is a goal and resting is d8fficult when used to be so active. I am doing ok. Got good results last week as clear margins were achieved in my 2nd op. I have an appointment for doctor next week to organise the start of my 15 sessions of radium. Hoping it will all be done by Christmas. It's a bit strange though because although I am so pleased and relieved I have all of these worries and 'what ifs?' In my head. What if they missed anything? What if this pain is something else? Etc etc. I guess this is normal from what people say. Staying positive though. You take care Michelle. Get watching box sets!! Hope your appointment comes soon and you know what your next step is. One step closer to the finish line!! Xxx

[MichelleHx]

Thanks, everyone knows someone that has fought the battle. Mastectomy was definitely right, really missing normality especially as no idea when it will get back to normal..either January or much later in terms of back to work. Least plenty of time to sort moving things just got to make sure rest which I am finding difficult. Be so glad when oncologist appointment comes through. How are you? Xxx

[Ali49]

You definitely made the right choice having the mastectomy Michelle and you have got rid of the cancer. They will soon have a plan in place for you.
I was actually out with my friend today. She is 50 now but had breast cancer at 27. She had mastectomy, chemo, radium and reconstruction. Now 23 years later she has celebrated 24 years of marriage and has a 16 and 14 year old!!
Stay positive Michelle and excited for your new house xxx

[MichelleHx]

Hi, as always seems to be the way with me nothing ever as expected. Histology from mastectomy also showed 2 small areas of invasive cancer. My lymphs came back negative so they have sent my tissue away to be checked to see if would benefit from chemo and bee advised most likely. Also will start tamoxifen as soon as possible either after chemo if need it or from next appointment. All a bit strange as we were hoping to try for a family when I hit 30 but this thing will have a longer effect than we thought. Will hopefully find out in couple weeks exact treatment plan. I am just so grateful I had symptoms in august as could have been different story but staying really positive especially as sold our house and offered on another so hoping to move by Christmas. Anyone know much about tamoxifen x x x x

[Ali49]

How did it go today Michelle?

Jas so glad to hear you are coping with radium. I wonder why you are having 25 sessions but I am having 15?

[Jas58]

Glad to hear this. I have had 12 sessions now with no serious effects. 😉

[MichelleHx]

Morning,

That is FANTASTIC news I'm so pleased for you, sense of relief. I guess radio is an option as you didn't have a mastectomy. I'm hoping for positive today and leaving with an appointment for a prosthesis, I'm doing really well since op, wearing a bra makes the scar a little more but I know it will get better. So when will you next see the consultant?

So so pleased for you xxxx

[Ali49]

Results good yesterday.All DCIS gone and clear margins achieved. Thank God. Just got to wait for apt in a couple of weeks to start radium to reduce the risk of recurrence.
Hope you are still doing well Michelle and praying for good results for you today xx

[Ali49]

Glad to hear you are doing well and yes NHS to be proud of. I am doing ok too thanks. Results of cavity shave next Wednesday and hoping the clear margin was achieved!!

[MichelleHx]

Morning,

Doing really well, drain came out on Monday and that was the most pain I had, nurse said it was because I was so slim so taking that as a compliment they really pleased with how it is healing, feeling a little imbalanced and resenting the good boob but still early days. Still keeping fingers crossed for lymph results net Thursday but certainly staying positive as NHS and Breast Cancer Care have been fabulous.

How are you?

Xxx

[Ali49]

Hi Michelle, how's it going?

[Ali49]

You get feeling Michelle!! All I seem to say to people lately is 'do you want to see my boob?'!! It was never in my daily sentences but you know we all go down different paths!! Glad your surgery went well. Take care xx

[MichelleHx]

Hi ya,
Thanks for all support. Surgery went as well as could be really pleased with what front looks like, side is a little sore with drain but on the mend now. Back next week then results following week so keeping fingers crossed and enjoying being spoilt hope everyone is well. Still not sure about reconstruction yet really want to feel someone's lol x x x

[Ali49]

Hi Michelle, hope your surgery went to plan and you are OK..thinking of you x

[Ali49]

I am sure we are all the same with the worrying bit Michelle. I go along as normal then stop in my tracks and thing hang on!!! I wonder if I will ever feel normal again. I am having a cavity shave on Thursday- just as my breast has recovered from the WLE! I hope you get good advice re prosthesis xx

[MichelleHx]

Support has been fantastic, been up and down and normally really positive but now again worry about the firther results and things. Just been looking at prosthesis and things on market, seem to be some differences between England and Wales, (I'm in England!). Will soon have experience around insurance when sort life insurance for mortgage. thanks everyone x x

[Ali49]

No experience with finding insurance after diagnosis Michelle. At least now you know when you're op is and can prepare. Hope you are coping ok and have plenty of support xx

[MichelleHx]

Hi guys, results on Thursday as expected more dcis found and also found out it was high grade. Booked in for a mastectomy on Thursday with pre ops tomorrow. Not having reconstruction at moment as just want to get rid of DCIS and get back to normal and see how go with prostheses. Been a funny week as get those results, sell the house and buy another. All a bit nervous as taking samples from lymphs to check unlikely to show anything but so nervous as this is all a million miles away but will be glad to know it's being dealt with. Anyone any experience with life or holiday insurance? Xxx

[Kiki2]

Not yet but must confess I get very nervous when it's time for the annual mammogram! Xx

[MichelleHx]

Thanks everyone you are all great and I'm convinced it is the support I have around me that keeps me strong. If honest things haven't really sunk in and struggling to believe it all.
I'm off work this week, popping in and out but not in charge of children!! Hate thought I can't do my job and unlikely to be able to do it properly for some time, got to try really hard to focus on me!!
I have to still make decisions on reconstruction but will do that more with results on Thursday but at moment just want rid of DCIS.
Did anyone have come back in their other boob? X x x

[Kiki2]

Reconstruction was ok, originally I wasn't going to have it but then decided as they were offering to do it all in one operation that I might as well. The recovery was uncomfortable for a while and I had to take it gradually and there is still some stiffness under the arm 18 months on but I am pleased with the result and in a bra or bikini you can't tell the difference. It's a very personal decision though and you need to consider all the options. I waited about 6 weeks from diagnosis to op but that was because I wanted to wait for a particular surgeon who specialised in that type of recon. I think without recon they would have done it within 3 weeks! Hope your results are good. Xx

[Ali49]

Glad you are taking time for yourself Michelle. Rest up. Praying for good results for you x

[MichelleHx]

School have been great, I did manage a day yesterday but taking today off. Have been signed off and lots of people at work surprised I have been in, but the distraction was great yesterday but know I won't be able to sustain The Act. Least less than a week till get results. Just not sure how long to expect to wait for op, the hospital have been fab and don't think they like to hang around but you never know. How was reconstruction? I still need to make decisions x

[Kiki2]

Teaching is a ridiculous workload even when you are fit and well so I would take some time off to get your head round everything and check out the gland you are worried about. Once you know what your next steps are and when your op is , you may feel glad of the distraraction of work, but if not then take the time off. The one plus about teaching is there is a good sick pay package ! Xx

[Ali49]

Michelle be kind to yourself and take time off. Ring your nurse or GPS today. Have you got family support?

[MichelleHx]

I am struggling with work, my class are hard work (I know people say shouldn't say that and that all classes are the same, it's the adults) and finding it hard to stay focused and in control of my emotions while in class. Hoping to get through today but we will see. Worrying about a gland too, so going to phone nurses, time has never gone so slow.
How was the mastectomy and reconstruction? At the minute I just want the mastectomy and consider reconstruction later. All just very emotional and no idea what should or shouldn't be feeling...thanks x x x

[Kiki2]

Hi Michelle, I'm also a primary teacher and was diagnosed with DCIS in Jan 15. Like you I had two patches so needed mastectomy. In the end I chose to have immediate reconstruction with an implant and mesh. I had 8.5 weeks off from the date of op then went back on a phased return. I did work until op but luckily had a student on placement  which took some of the pressure off as it is hard to focus! I didn't need any further treatment apart from tamoxifen. I hope all goes well for you and you soon have a date. Xx

[Ali49]

Phone your nurse or go to your GPS about gland. Could be just a reaction to you being stressed. Try to rest and give yourself space to get over today! When do you get results?

[MichelleHx]

Bet that can be rewarding. Didn't really get any answers other than what happens during biopsy and next stage. Now got myself worrying as a gland near my ear is all lumpy and raised so wondering if there is any link...love to fast forward clock so have a understanding if what is wrong and how it will be fixed. Bodies just so complicated...xx

[Ali49]

I teach year 7 in a special school and music to years 7 - 9. Hope today goes well and you get some Answers xxx

[MichelleHx]

Bless ya, what age do you teach? I've just moved schools in our federation and started a promotion so timing is pretty rubbish, but everyone has been brilliant. Had yesterday and today off (have my biospy today) and hopefully will be okay for Thursday and Friday and then next Thursday should have the full results and dates of what is happening when. It is this waiting that I am finding the hardest.

I have a whole list of questions for the nurses/consultants so might get some answers today.

xxxx

[Ali49]

I had biopsy on 24th Aug. Results & diagnosis on 7th Sept then WLE on 19th September. I was really worried and scared of op but everyone was lovely. Got results from op last Wednesday which showed all DCIS and clear margins on 3 sides but close to the edge on the other. So now I am having 2nd op next week to take 'a shaving ' they said to get a clear margin. 4 to 6 weeks after that I will begin 3 weeks of radium. All a bit of a shock to say the least but now just trying to get on with it. I went into work the day after my diagnosis as if it 'was just one of those things' but then i listened to what me BCN said and i havent been back since. Michelle you are coping with a lot and work is just one thing that you could do without - unless that is you find it easier to cope going to work. Call your BCN or the nurses on this site and chat to them about how you feel etc. They will be great at helping you to come to a decision about work. Will be thinking of you tomorrow and I hope you have lots of love and support xx

[MichelleHx]

I've already had a week off when they took the milk ducts out but be looking at mastectomy not sure how long will need especially as teaching isn't sitting at a desk. Came home today as head wasn't right hoping to be back Thursday and Friday so will wait and see. All a bit up in the air with dates, will feel better I think when fully know. School have been great, just guess finding it hard to focus on me...have you had your op? Definitely thinking will need gradual back to work once things all sorted....thanks for all support x x x

[Ali49]

Hi Michelle, I am a teacher too and 9nly did 2 days back in work after the summer hols before being diagnosed on 7th Sept. Then had my pre op and a week off before my op due o docs saying they did not want me to get bugs or anything as it would delay my op. I have been told to aim for returning after Christmas. Wok would be a distraction but I would not be able to apply myself properly at the moment and my head and colleagues have been fantastic. Do whatever you feel is necessary for you - my friend said to e someone else can do everything else but only you can fight the cancer and get through what you have to get through - this is a time when you have to put yourself first her ever possible xx

[MichelleHx]

Thanks everyone, I just want to fast forward this week. Having up and down days, don't know if should be going into work or what. I'm a teacher so finding it rather difficult at moment in terms of focusing on my own emotions. How much time did people take off? I also have PCOS which is related to hormones so wondering if any links there. So many questions hopefully feel more normal once have some answers to those. Xxxxx

[lizred]

HI Michelle, it is a difficult time when you first find out, so much to get your head around and what seems like so many unknowns - as others have said, things do improve as results and a treatment plan gradually fall into place. I'm no expert but I have had genetic testing - I had cancer in both sides (tho thankfully both DCIS and only a very small area on the left) and also some other stuff going on which lead the medical team to question if there was something genetic. I think if enough pieces of the picture (family history, specific medical symptoms) are present then they will look at testing - I don't know if your age is a factor in this.

Re the lymph nodes - my consultant said it would be standard to do a sentinal lymph node biopsy with a mastectomy even though they were fairly sure it hadn't spread as it does give a way of double checking. I think this is fairly standard but of course your team / BCN will know for sure.

Hope things start to fall into place a little for you soon xx

[Steph J]

Hi Michelle 

I was diagnosed with low grade DCIS  and other suspicious cells in August , the type of DCIS I have has determined that I am lower down the ladder for timescale to op  , this is absolutely fine with me . I too have to have a mastectomy and it was mentioned at the first consultation when I was told of my diagnosis . I am very lucky in comparison to some ladies in that at present I dont have to have chemo . The thing that I have learnt is that the picture unfolds more with every visit and until the tissue from the mastectomy is sent off for histology the final picture will not be clear . I was very impatient initially and very anxious about the unknown and waiting . I now have a plan and dates and I feel much better . I am having my lymph node ( 2 or 3 ) biopsy on 17th Nov , results 30th and op on 5th Dec . As well  I have to start on Tamoxifen and have a CT on my abdomen to check if blood vessels are viable as this is where the tissue is hopefully being taken from for my reconstruction . So I guess moral of story is everyone is different and timescales differ although like you I wanted to know so I could sort it out in my head and plan . the gene part I have no idea except someone I know has been gene tested and they did it after she had her mastectomy and treatment . Your breast care nurse should be able to tell you . I spoke to my breast care nurse from hospital and the nurse on this site quite a few times initially beacause I couldnt make sense of things . All nurses were lovely and even though Im sure some of my questions were silly I felt that they were listening to me . The girls on here are fab too and Iv had so much comfort from coming on here . Steph xx