Diagnosed with DCIS

[La-La]

I know, it's a little confusing when one does it different to another... makes you wonder.

It's only about 4 weeks since I found the first lump, but time seems to have teally stretched out, feels a lot longer and looks like another 2 weeks til chemo will start.
Not that I'm looking forward to it, but I am made more anxious at the idea Eric & Ernie (my son mamed my lumps!) are festering/growing with every day that passes.
Eric (big noisy Grade 3 HER2+ one!) is the one that bothers me.

I'm a calm positive person but feeling anxious today. (Maybe need to lay off the Costa Flat Whites!!)

Hope you are feeling OK?

[jules_66]

Yes I am HR+ and HER2+ and going to have both Herceptin and Tamoxifen after chemo.  I had mastectomy on 1st April, each hospital seem to do things in different order.  Like you my nodes were unaffected thankfully. Surgeon said only reason I needed chemo was to get the Herceptin funded 😞 if I was negative I wouldn't be having chemo at all!!  Am having FEC but only 60/70% strength although told side effects would be the same 😞  

[La-La]

Jules, I assume you are HER2 + to need Herceptin?
That is why you need chemo I thought?
HER2 cancers are more aggressive/spread faster, hence chemo before lumpectomy/mastectomy?

I'm same as you.. One of my 2 lumps is HER2+, but no obvious node involvement.

[jules_66]

Hi Jo  Seen Oncologist this afternoon and do have to have 6 x sessions of chemo to get Herceptin 😞 Being put on FEC (but only 60/70% rather than the 100%).  Told to expect hair loss and other side effects despite lower dose.  Got to have heart scan and then good to go.  Chemo nurse will ring in a day or so to sort out and hopefully chemo starting within 2 weeks.  Now I know its happening for sure I just want to get on with it. Was told no need for radiotheraphy though so one less thing to undergo.  Onto Heceptin (for a year) and Tamoxifen (10 years) as soon as chemo is finished.  Would naturally have preferred them to say chemo wasn't needed but if it gives me better protection for it recurring it's a small price to pay.  Love Jules xx 

[Jobey68]

Hi Jules, that's fantastic news! thanks so much for letting me know, it does seem such a shame that they appear to have to over treat just to get you the herceptin, I've read a few people saying that their oncologist managed to get away with them having one or two sessions to qualify, why does everything have to come down to money!? your in no different a situation than me really, cancer removed with node spread but because I'm ER positive and HER negative I get rads and Tamoxifen as a matter of course, go armed with all the facts I would say and hopefully you can get away with minimal Chemo, please let me know how it goes on Thursday, love Jo Xx

[jules_66]

Hi Jo.  Just thought I'd let you know outcome of outstanding lymph node result which I got this afternoon.  It's totally clear and no further surgery needed 🙂 So nice to get some good news.  Still down to have chemo (and possibly radio)  but hospital confirmed that I don't actually need chemo but to get the Herceptin, which I do need, I have to have chemo too in order for it to be funded!!  See Oncologist on Thursday and have lots of questions to ask including if this is the case can I have a milder dose and/or fewer sessions.  Hope you are doing Ok. Love Jules xx

[Jobey68]

Hi Jules, i should say that was a lucky find, bizarre to use that word when talking about cancer but like mine which was found by pure accident whilst having another harmless lump biopsied I do now feel very lucky once the initial shock had worn off, you sound a very strong and determined lady and will cope with all this just fine 😊Xxx

[jules_66]

Hi Jo. Thanks for your lovely message. Yes the best news for me was the girls not being at any higher risk. I was surprised about nodes too but glad that particular lymph node happened to live in the breast tissue and ended up being removed, the Consultant said he certainly wasn't looking around to remove lymph nodes at that stage. How lucky am I?
You take care and we will def keep in touch along our journey xxx

[jules_66]

Hi Ali, don't beat yourself up about having a meltdown. The enormity and speed of everything is hard to take in and deal with at times. You will bounce back I promise. That's tough having your own business but at least working from home gives you a little more flexibility. I'm not one for sitting around and find resting a real bore. I was determined to carry on pretty much as normal which I did and 3 weeks on I feel great. That said you do have to listen to your body, the first week I did have about an hour of sleep in the afternoon and then was raring to go again.
Keep in touch, these forums have been such support both practically and emotionally, no comment is too trivial or daft and everyone is there to help each other.
Take care, lots of love to you xxx

[Ali1962]

Hi Jules,

Your positive attitude is really inspiring. I've been pretty good up to now but had total meltdown last night. Think it's just starting to sink in just how much this is going to mess my nicely organised life for a while!

Especially my business which I've spent 3 years building and has just reached the point where it's starting to do really well. I'm planning to take a week off for the Mx but then start working a couple of hours a day - I work from home so no commute and I can be really flexible with lots of rests. Consultant & BCN were advising 4 weeks completely off, but that's very impractical - and likely to drive me nuts from boredom.

Best of luck for your next step & fingers crossed for no more surgery.

[Jobey68]

Hi Jules, bless you that's a lot to take in, no wonder you were there while! There a certainly an awful lot of positives in there and knowing your girls are safe must be an incredible relief, Ive got two boys and have said how grateful I feel not to have that worry about them at the minute, surprising that your sentinel nodes were clear but another one wasn't though, I thought any spread would hit them first? I know Chemo isn't what any of us what but as you say onwards and upwards and you do what you have to do, my journey may be shorter than yours but I will be on here cheering you on all the way, thanks for letting me know 😊 love Jo xx

[jules_66]

Hi Jo. Sorry appt was late and was there ages and not home until after 6pm and have just finished letting family and friends know! A mixed bag but lots of positives 🙂
They got it all out :))))
Its grade 3 invasive but only at stage 2A :))))
Sentinel nodes were clear 🙂 however 2 lymph nodes were also removed and 1 has shown to have early cancer cells surrounding node and the other one is still being tested (result next week)
More surgery to remove lymph nodes if outstanding result is positive 😞
Chemo definite 😞 - 6 lots every 3 weeks and the first next thing to happen (unless more surgery is needed)
Radio not decided upon yet but likely.
Onto both Herceptin and Tamoxifen for 1 and 5 years respectively.
Reconstruction not an option until at least 6 months after treatment has finished.
Brilliant news is it's not genetic so the girls are at no increased risk and don't need early screening or testing :))))
Both surgeon and Breast Care Nurse thought I looked really well and was very impressed by how active I was (and had been) - think he was a little surprised I was ironing on discharge day but said it obviously worked as I looked really good!!
Am totally fine with it and very ready to start next step of treatment. Who knows if (or when) I lose my hair it may come back long and blonde smile 🙂 but more likely short and completely grey !!
Onwards and upwards xxx

[Jobey68]

Hi Jules, been thinking of you today and hoping everything went ok with your results xx love Jo

[Ali1962]

Well, I have decided to delay reconstruction.

Surgeon gave me a best guess of 30-40% chance of needing further treatment after the Mx and for me that's too high for me to go ahead with reconstruction only for it to be messed up (I'd definitely need an implant).

If I do need further treatment it's going to be hard enough to take without worrying about the effect on a new boob!

[jules_66]

Thank you Ali. Hope all goes well for you too, don't be rushed into any decision xx

[Ali1962]

Fingers crossed for you Jules.

I have my meeting with the surgeon tomorrow to organise surgery. Will need to make decision on reconstruction but will almost certainly delay. None of the options sound very appealing!

[jules_66]

Well have had a call from hospital to say results are back so appointment is as planned tomorrow. 🙂  They couldnt give them to me today but not feeling too hopeful about lymph nodes as they did tell me what was involved in removing them! 😞 Really hoping I've got it wrong but expecting the worst and hope no other nasty shocks ahead! At least the 3 weeks of waiting post surgery will soon be over and I can move forward.

[jules_66]

So glad to hear all went well Jo and that the news is so positive for you. Good luck with the rads, sure you will be fine. No phone call as yet from hospital so hoping that means results are back and have been discussed at MDT meeting today and my appointment will be as planned on Thursday pm. Take care xx

[Jobey68]

Hi Jules,
Appointment with oncologist went really well, lovely lady and my BCN Emma was there with us, she's been an angel! All very positive for me I'm happy to say and as mines low grade tubular the outlook is very good,they did all rads planning today too so have had my CT scan and little tattoos and have all my dates so ready to go, I start on May 19th for 3 weeks then fingers crossed that's it until first year check up 😊 I'm almost four weeks post op but had my oncology appointment through the week of my op, our hospital have been wonderful and I can't fault them, wishing you ladies the very best of luck and will be looking out for your news xxx

[jules_66]

Hi Ali. The BCN are fab aren't they, really help you through the what's and wherefores of it all. Hope you get on OK with surgeon, mine is lovely and I feel very well looked after. Take care xxx

[jules_66]

Hi Jo. Thanks for your wishes, will let you know how it goes. I too am keen to get on with step of treatment so hope results are back. Good luck with oncologist, hope you don't have to wait too long to start rads xxx

[Jobey68]

Hi Jules, was thinking about you earlier as thought you had your results this week, will be keeping everything crossed that they are as good as can be for you, Ive got oncologist in the morning to discuss the start of Rads, will be glad to get it all underway now and get some normality back to life hopefully! Xx Jo

[Ali1962]

Thanks for the replies.

Had a chat with my BCN which helped. I'm fairly sure I won't want reconstruction but don't want any decision I make at the moment to be final. She thought radiotherapy was quite likely given amount and grade of DCIS so that makes immediate reconstruction less of an option. Will discuss with surgeon on Thursday.

Hope your results are good Jules. 

[jules_66]

Thank you Janet, will let you know outcome x

[Janet1954]

Fingers and everything else crossed for you Julesx

[jules_66]

Hi Ali962
I was diagnosed in March and had mastectomy and SNR on 1st April. My surgeon said I couldn't have reconstruction at same time as with longer recovery time would delay following treatment (likely to be radio and chemo) so I have to have delayed reconstruction. Although I would have preferred it done at same time I am certainly still planning on having it done. I'm due to get results on Thursday to see if in lymph nodes, if so surgery to remove them first, really hoping they are clear!!!

[Janet1954]

I was diagnosed in January and thought long and hard about reconstruction, but after discussions with my consultant and a nursing friend decided to go for Masectomy followed by immediate reconstruction using implant and back muscle. yes the recovery time is longer (was in hospital for 6days) BUT I am so glad I went ahead, in fact only this weekend I am back into my normal bras again. I was a 36 DD. I have to have the semitary op on the 30th May. My margins were good so Rads and Chemo were not needed.The main reason I went ahead is that I wanted it over and not to have to worry about reconstruction at a later date..but that's me Mrs Impatient!!!!..Will be thinking of you stay in touch this forum kept me going knowing that I was not alone.xx

[June_BCC]

Hello Ali1962

Welcome to the forums.  I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.
As well as the support you will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

 http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

You may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes

June, moderator

[Ali1962]

Its so good to come on here and see I'm not alone.

Diagnosed with DCIS last week. Had 3 areas of calcifications biopsied. The one on the right is clear but 2 areas on the left so it's Mastectomy and Sentinel Node Biopsy. I'm 36F and too big for reconstruction without an implant - and I can't bear the thought of that. I think I'll wait and see - has anyone else delayed reconstruction and then gone ahead later?

I'm self employed too so now have to work out a) what to tell my clients and b) guess how much I'll be able to do while recovering. Fingers crossed I won't need radiotherapy or chemo.

[Janet1954]

Yes it's a bombshell gone off. Once you have time to take it all in things become clearer. the ladies on this Forum are there and will support you every step of the way. Just to let you know I was diagnosed on the 12th January this year. operation done on the 31st January...and 10 weeks + on feel great..got a new boob,semitary being carried out on the 30th May. And as they say the only way is forward. I was extremely lucky that my margin were good so no further treatment. thinking of you and stay I. Touch

[heathercora]

this is very similar to what as happened to me.
I went for mammogram, I was called back, but told not to worry as calcifications have a very high percentage of being benign. Then the bomb shell, needed complete breast of and just awaiting my treatment plan. still in shock.

[jules_66]

Hi ladies. Hope ops went well. I'm now 13 days post MX and SNR and doing pretty much all normal activities, I was determined to carry on as normal from day of discharge. The worst bit for me is the nerve damage in upper arm and chest, its an odd sensation both painful and very sore. I'm now keen for results (due on 23rd) to know what comes next and praying lymph nodes are unaffected. It sure is quite a journey isn't it? Keep positive all and hugs to everyone xx

[Janet1954]

Thinking of you today Morrisbird...

[morrisbird]

Rubykins - hope it all went well for you last month.  I am going in at 7.30 tomorrow morning so feeling a little apprehensive.  But as others have said, it also feels quite surreal - not sure that it is really happening to me.  I've checked my bag and it contains everything that anyone has ever recommended on these forums so weighs a ton!  Guess someone will have to carry it home for me!  I've been using a DVD from Maggie's centre for relaxation and meditation and also yoga nidra to help me relax every day. Both now downloaded onto the iPad so I can carry on with them.   And am focussed on the fact that this time next week I should be back home and getting ready to watch Poldark in the comfort of my own living room!  Sending good wishes to anyone else in the same boat.  xxx

[33kris]

As like everyone else has posted I too was shocked by the DCIS diagonosis
I am now one year into my journey
Started with a lymectomy that did not get it all. Followed by 3 other surgeries.
There is light at end of the journey just keep moving

[jillybee]

Rubykins...how are you.....reading this thread was like read g my own story...hugs

[Janet1954]

Rubykins you will be fine...will be thinking if you.

[Hazelr]

Good luck tomorrow, I am due to have mx at beginning of May and am really anxious about it. It is nice to get some support from here, will be thinking of you, post an update when you feel up to it, deep breaths xx

[Rubykins]

Hi going in for my operation tomorrow for my mastectomy and am feeling really anxious.  I have waited for a month now from my pre assessment.  It still feels very serreal.  Hoping to sleep tonight have to take my diazapam.  Not knowing what to expect when I get to the ward.  Got to be there for 7.30 tomorrow morning.

[Lena2]

Hi Kentstar, I am going for my ct scan tomorrow and bone scan on Friday and I am more worried about these. I took the news well that I had to have a mastectomy but I don't think it has really sunk in yet. When told the news the consultant said I could have an immediate reconstruction. I am a 42 DD at the moment but he did mention a reduction to match but I am pretty sure he never said at the same time. I am now worrying about whether to have muscle or flab from back or belly. I really do not know what to do. I cannot think straight anymore. Perhaps the choice will be taken from me as I am 74 but extremely active - golf,Aqua, gym and I walk a lot. Oh god I don't know what choices to make. I am going to have a double vodka now and forget about everything.

[Janet1954]

Rubykins...like you I was quite sore after the biopsies, and had some lovely bruises to prove it. As you say the worst part is the waiting....And I do understand your anxieties ....But I came to the conclusion that I could not turn the clock back, I had been dealt a hand that I didn't want...so I had to deal with the best way possible..and I am sure that this attitude has got me to where I am today 3 weeks after my operation. It's been a learning curve...at first my new Breast was so hard but has now settled down and dropped and believe it or not I have my cleavage back...I joke with people that once I have the next operation for nipple reconstructing and an uplift to the other Breast I will have the perfect pair. Stay in touch with this forum we are all in the same boat. X

[Rubykins]

Have had my date of my op and  it is the18th of March which is longer than they said it would be.  This is because my surgeon is off on leave this week and next week.  I was really upset as I thought it would have 2-3 weeks after the pre-op assessment.  I am just trying to get on with nornal everyday things like working and trying to put it at the back of my mind which is really hard sometimes and I know the the week of my op my anxiety will be through the roof.  I am still having stabbing pains in my breast where they did the biopsy procedure is this natural and my boob is quite bad sometimes and itchy.  Should I speak to my breast care nurse.

[Rubykins]

Thank you Janet.  I have bought a pyjama with no cuffs on the trousers but it has long sleeves and is a bigger size to what I would normally wear.  Thank you for all your tips will take them onboard.  Hope you are healing well and will soon be able to do what you used to.  Thank you for wishing me good luck for my op.

[Janet1954]

Hi there. I am Now 2weeks today post surgery, and It has been a learning curve for me. I thought I would suggest a few tips for you since I really was quite ignorant of what to buy for going into hospital and post operative bras. I purchase some PJ's with loose ankles (not cuff)since you will have to have stockings on post op and the tops should be sleeveless...I purchased a couple of loose fitting should strap type. I did go to MS and buy 2post surgery bras but they have now been Reid ed since my breast are nurse recommended Sloggi sports type which go over the head. although they are ok for night sleeping I have found a brand if bra made by ROYCE it isfront fastening and so comfortable and this was recommended by my female surgeon/consultant. Thinking if you x

[Rubykins]

Thank you so much both of you. It really helps to know someone who has gone through what I am feeling.  Glad your both on the road to recovery and are feeling better day by day.  

I have had my pre-op date and it is on Friday the 13th in the afternoon so I have heard it is normally two weeks after that for the operation.  I do feel very greatfull that it has been found early and that I will be having an immediate breast implant at the same time of the operation.  And I am trying to be positive and not worry too much.

[Kentstar]

I can relate to the shock. I was recalled after routine mammogram and told I had calcifications they were going to biopsy. I was totally unprepared for the results and the treatment, a mastectomy! I am now 2 months post surgery and it's ok. Obviously I wish it had never happened but any chance of cancer was removed with my breast. A mastectomy means no follow up treatment should be necessary and as I had a reduction at same time as immediate implant so some problems caused by my very large breasts, like breathing, neck, back and shoulder pain have gone. I miss my old breasts, they have rendered men speechless over the years lol, and hate the scarring but every day they look better as they settle down. It is a difficult time as you wait for results and surgery dates but focus on positives where you can find them x

[Janet1954]

Like you I was recalled on the 29th December,biopsies taken and confirmed with this condition on the 12th January..yes I went into a bubble but fortunately my husband was with me and he became my ears. It is a lot to take in at first but first and foremost they have diagnosed it early. The only treatment available for me was a mastectomy followed by immediate breast reconstruction..I had this done on the 31st January and was released from hospital yesterday so as I type I am in recovery. This time last week I thought the end of my world had come..but life is going on and I am learning to like my"new breast". The one thing I would suggest you do before your operation is to practice the exercises that will be given to you its best to know what to do beforehand. I am not sure if your have a V shaped pillow but I truly wished that I had taken this into hospital with me. It's an emotional roller coaster until your surgery and I truly know your anxieties. As they say you cannot turn the clock back..so only look forwards. Xx😀

[Lucy_BCC]

Hi Rubykins

Welcome to the BCC forums where you will find shared experiences and support form your fellow users, in addition our helpliners are on hand for you 9-5 weekdays and 10-2 Saturdays on 0808 800 6000 with further practical and emotional support

Here's a link to the DCIS information on this site which I hope you find helpful:

http://www.breastcancercare.org.uk/breast-cancer-information/about-breast-cancer/primary-breast-canc...

Tale care
Lucy BCC

[Rubykins]

Recalled for a mammogram and had to have another on my left breast and a scan then they took 12 samples from 2 biopsies as they had seen some calcifications in my breast tissue.  When I went to see the Specialist last week I was so shocked.  He came in and asked a few questions then he came out with "Its bad news I'm afraid".  My husband held my hand and I just felt so numb.  The specialist went on to say although it is non invasive that the calcifications in my left breast extended 6.5 cms from the bottom front of my breast to the back of it and then told me that because of the size I would need a mastectom as it would take most of the bottom of my breast away  and offered me a skin saving mastectomy because of the size of my breast and an implant.  When he said this I felt like asking him if he was joking.  Felt and feel so numb and I am devastated.  Couldn't go to work all last week as trying to come to terms with the news.  Going back to work this week has helped but I feel it is happening to someone else and can't believe I am going to loose my breast.  Saw breast cancer nurse a week ago, a few days after the consultant, and she explained that it was in the milk duct and was not invasive.   

I realise that I need to have this as there could be a chance of it becoming invasive in the future but still feels so drastic.  I still feel like it is happening to someone else and am very anxious about the surgery and how I will feel after it.