Desperate - newly diagnosed with DCIS

[kathrynb]

Conorchloe I watched the full Monty girls. Thought I might find it upsetting but it was very uplifting I agree xx

[kathrynb]

11:11 AM
Hi ladies I just wanted to thank you for your replies to my comment on this thread. I am now awaiting date for mastectomy with DIEP flap reconstruction as unfortunately due to there being three separate areas my surgeon said this would get me a good cosmetic result. He picked up on the fact of how important this is to me. I am extremely nervous. Can't quite get my head around staying in hospital for best part of a week and having to rely on others to help me with personal stuff such as washing. I think Conorchloe referred to feeling laid bare and I think that is how I will feel. I am a private person regarding my body and definitely a put my make up on to answer the door kind of person so think I will feel very vulnerable. I keep trying to see beyond it and telling myself that life can and will be normal afterwards. Hoping I am stronger than I think! One thing I have discovered is how kind people are. I have always suffered from low self esteem so it has been wonderful to feel such love from my husband daughters family and friends. Also the support of the ladies on this forum (some of whom have contacted me personally). I keep re- reading your words of encouragement - they are so helping to get me through and can't think you enough. Just talking to others who know how you feel is wonderful. I wish you all a lovely Easter. Those who are through treatment I hope you were loving life and living it to the full. Those like me who are still caught in this 'blip' in our lives here is to the future xxxxx

[Conorchloe]

The full monty girls night tonight ... Very powerful! How brave are we. How brave they. Thank you.

[kathrynb]

Conorchloe you are a star! Xx

[Conorchloe]

Ahhh you got my original msg ive just seen it posted !!! 🙄 maybe they are monitored first andvit took some time! Anyhow ive pmd you saying more or less the same so ignore it lol.

Stay strong lovely wow 1st may thats a long wait 😑 think 6-7 wks from 1st may, your life hopefully will belong to you again 🥂

[Conorchloe]

Tried again, anothet lengthy msg but it doesnt like it and wont send it. Kathryn i will pm you tonorrow lovely xxx

[kathrynb]

I will try again tomorrow conorchloe as it was quite a long reply. You are right it is totally frustrating! X

[Conorchloe]

Hi kathryn no i cannot see any msg. I dont quite know whats going on but its very frustrating x

[kathrynb]

Hi conorchloe I have replied to your kind message but not sure it has listed posted. Please let me know if you can't see it x

[kathrynb]

Hi CC thank you so much for this. I am really encouraged by your surgery recovery experience. I can't quite get my head around having such a big surgery but the surgeon said that I would not get a good cosmetic result from a WLE because of the size of the DCIS and he knew that aspect is very important to me. Unfortunately because of the position I will lose my nipple but I can have reconstructed at a later date. Am dreading that but at least it will look ok eventually. I am sure it does take a while to look at yourself in the mirror but I guess if you leave it a little while it is giving all the scars a bit of time to settle down as well. I was interested to read you have been with your partner 31 years as that is a similar time that I have been with my husband so I am guessing we may be around same age. I know I am not old at 53 but I had wondered if I would take longer to recover than someone younger so that is encouraging too. I hope I haven't assumed wrongly. If I have I apologise. I have been told my Op will be 1st may latest but hopefully sooner. Thank you so much for your support CC. How funny that the only nice thing in this whole situation is I realise how kind people can be xx

[kathrynb]

Ladybowler I will definitely do that xx

[kathrynb]

Thanks CC I do appreciate it xx

[Conorchloe]

Hi ladybowler i just clicked Add Comment on here ? It wasnt a pm 😣

[Conorchloe]

Hi kathryn sorry ive been out and about this afternoon. I will re-write it the very first chance i get but definately before tomorrow night xxx

[ladybowler]

Kathryn

I am positive you will be able to help and support the ladies who come on here after you xxx

[kathrynb]

Look forward to reading it if CC is able to repost. All the kind and helpful comments on here really do help and I hope when I am a little further down the line I am able to be helpful to others.

[ladybowler]

Cornochloe

I do not know if this will work, but if you click to reply again, it is possible as it was a lengthy post that you might be able to reload it again.  When you click on reply, sometimes at the top of the box there is a message and asks you to click on Load or Discard, click on Load and it might come back.

Helena xx

[kathrynb]

Hi Conorchloe how kind of you. unfortunately I can't see it. Not sure why? X

[Conorchloe]

Hi kathryn ive just written a lengthy reply. It said posted successfully but i cant see it. Are you able to see it?
CC X

[Conorchloe]

Hi Kathryn
I had mx with immediate diep reconstruction. The result is amazing and im so happy with the decision. I have peace of mind its all gone with an op that looks exactly the same as before, although when all has settled i will have day surgery to remove the flap and re-align if need be.
I asked for nipple sparing and although they can only make that final during the actual op, they tested it and did manage to save my nipple which was important for me.

The op is long, 10 hours, gruelling for the family but a nice sleep for you with no complications. I must admit i was very uncomfortable around my abdomen when i woke as i only had just enough fat and skin for recon so they had to stitch very very very tight although ibrufen and paracetomol did me fine. The breast was excellent though no pain whatsoever!
Physios had me up on day 2 and gave me excellent exercises to 3 or 4 times a day. I was walking tall within a week.
Two weeks on and you feel so much better each day.
Four weeks on you "feel" back to your old self
Six weeks on you "are" back to your old self ☺

I must admit tho kathryn in clothes youd never guess. In the shower looking down its exactly the same but for some reason i cant explain i personally cannot look in the mirror yet and ive developed the mentality that if i cant look then i cant expect my partner of 31 yrs to look but thats me. He has seen it during all appointments though.
So i guess physically i am very pleased and coukdnt ask for a better result but i guess i need to deal with it mentally but i will do it in my own time.
Hope this helps. Any questions just give me a shout
CC XXX PS when is your op planned for?

[kathrynb]

Thank you Dizzybee for your kind support and the useful advice you have given me x

[Dizzybee]

Kathryn, great to hear you've made a decision that you're happy with, and I hope it all goes well. 

[kathrynb]

Hello everyone thank you for all the replies and helpful advice you have given me so far. I wanted to update you and ask please for your further thoughts. So yesterday I made the decision following appointments with both plastic and breast surgeon that the best thing was mastectomy with immediate DIEP flap reconstruction. Decision was made because it is a reasonable size area and the surgeon thought I would be better pleased with the cosmetic result which is extremely important to me. I would be so very grateful to hear positive comments about not only ladies experience of this procedure but also positivity about how you all felt about your body and relationships afterwards. My husband is being amazing but it is still something that is really playing on my mind. Thank you all in advance for any replies. Xx

[Jas58]

A friend of family in Australia recommended it and I found it so helpful and reassuring and very readable. Also if you download it updates he has written since get added I have discovered 😁 good luck with your treatment

[Dizzybee]

Jas58

Thanks for recommending the John Boyages DCIS book, it is so helpful and reassuring. I really wish I'd had it when I was diagnosed, I think it would have really stopped some of the panic.

[ann-m]

Hi Kathryn & Elmoss,
If the pm function isn’t activated, then drop the mods an email at: moderator@breastcancercare.org.uk
ann x

[kathrynb]

Elmoss I think I may have just managed to message you let me know if you receive it please x

[Elmoss]

Kathrynb, I don't have anything like that on my profile, I have also looked quickly on the search bar, they suggested looking for an envelope icon???. It may be that because I only registered today (literally after reading your post) I am a 'newbie' member and can't have that option yet.

i have a bit more time to search tomorrow night....I'll let you know x

[kathrynb]

Elmoss I was just looking on my own profile and there is a tick box for turning on private messages. I just wondered if yours was ticked to enable me to message you? X

[Elmoss]

Sounds good, let me know how you get on. I so hope to speak to you soon, take care xxxx

[kathrynb]

Hello Elmoss thank you so much for the message. I would be very grateful to talk to you. Unfortunately I seem unable to private message you. I am sitting here dwelling on everything and your message has boosted me. I will try and work out how I can private message you Kathryn

[Elmoss]

Hi Kathrynb

i have just read your post and registered to comment on this forum. Unfortunately because I am a new member, I am unable to pm you. I too live in Cambridge and had the same diagnosis as yourself. I am always here to help if you have any questions xx

[ladybowler]

kathryn

Good luck for tomorrow, will be thinking about you xxx

[Dizzybee]

Kathryn

That is a long delay, I can understand why it is so stressful. I was given my diagnosis by the surgeon who then pitched straight into the mastectomy and reconstruction options versus lumpectomy plus radiotherapy. It was a lot to take on board at once, so I can see there would be some advantages to separating the diagnosis from the surgery consultation. But delays are horrible when everything seems so overwhelming. I'm sure it will be better when you know what is happening.

I hope your appointment tomorrow goes well. An MRI must be better than being jammed in the mammogram machine!

Xxx

[Jas58]

Yes that’s who I meant! An excellent service

[kathrynb]

Thank you Anna I will definitely look at that. Much appreciated

[Anna_BCC]

Breast Cancer Care have a great service called Someone Like Me, where you can be put in touch with someone who shares a similar diagnoses or issues as you.  This is a free service and it can be done either by phone or email.

Best wishes
Anna
Digital Community Officer

[kathrynb]

Dizzybee I should add that my first appointment was 8 feb so my the time I see surgeon on 23rd March it will be six weeks too.

[Jas58]

You are welcome Kathryn and as everyone says the waiting for results is the hardest part. We aren’t allowed to mention specific people/surgeons etc on this website understandably, but you can privately message if you want to get more information. I found having someone to talk to who had had the same diagnosis as me very helpful. Breastcancer.uk can arrange this for you through the main website. I had a lady phone me before, during and after my treatment. Can also recommend the book DCIS Taking Control by John Boyages. He is an Australian, but the book is very readable and informative, in a really positive way. It helped me a lot. X

[kathrynb]

Hi Dizzybee yes I have had a vacuum assisted biopsy and have been officially diagnosed. I have been told that the MRI biopsy is assist to place two markers to show where the surgeon will need to cut if I had a WLE as he said it made it clearer for the surgeon. I am having that tomorrow and then meeting the consultant next Friday 23rd. By then hopeful I have also seen the plastic surgeon who will be able to advise me of alternatives because I believe at the moment it is my choice. All these tests are so so stressful and it seems that no two people's experiences are the same. All of which makes you read all sorts into things xx

[Dizzybee]

Kathryn

Have you not had any biopsy at all yet? Normally you aren't formally diagnosed till the biopsy results are received. I was told based on mammogram and ultrasound that I almost certainly had DCIS, but it would be confirmed by the biopsy results. The first lot of biopsies came back as highly suspicious but not conclusive (they had a lot of trouble reaching the right area as it was close to the chest wall) They sent me to see the surgeon, who referred me straight back for more biopsies.

The second lot of biopsies were done using a vacuum assisted machine and did come back positive. The whole process took 5-6weeks to get a confirmed diagnosis.

I didn't think they did MRI scans for DCIS, Did anyone else have one? My were done stereotactically, which means using a computer aided mammogram machine.

I was very worried about the size and grade, because mine was large and grade 3. But they told me not to worry, the outcomes for DCIS are excellent whatever the size and grade.

It is a hugely stressful process to go through, and I think this is the worst stage, when you're still trying to come to terms with it all and there's a huge amount of information to take on board. You're bound to be anxious. Waiting for tests and results doesn't get easier. But once the results are in and you get a treatment plan, things settle down. All the treatment is perfectly doable, and afterwards you can start to find your new normal.

[RoxanneT]

Kath i wish i could give both you and your hubbie a big hug. Xx

Ann-m is right you won't get any final answers until after surgery once they have analysed it all. Unfortunately  things can change.

I had mammo, scan and biopsy and was told it was DCIS between 7 & 9 mm, low to immediate grade. I was warned that they would look at the DCIS under a scope but it is non invasive cancer but there is a chance it may contain some invasive cancer. It turned out to be 6.5mm and all non invasive but the wait was awful.

A letter was sent to my GP after my first meeting with the surgeon, i believe that's the plan Ann-m was talking about.  

I know what you mean about trying to keep calm my emotions are all over the place. I've just had my nightly cry.  Now I'm  off to bed.

Are you still working? Apparently you can ask your GP to sign you off. I didn't  know that and worked for a further 2 weeks after my diagnosis. I wanted to tie up all my loose ends, which i did. I told my manager 2 days before the op.

hugs to you both💞.  

[kathrynb]

Thank you Ann for replying. Today has not been good. My lovely husband is I think frustrated by my increasing anxiety and I want to keep calm. Got no choice really. Not easy though but your positive messages really help. All the best to you x

[ann-m]

Yes Kathryn, in respect of the final diagnosis, they do say the same to everyone, as it is all usually finalised after the final lab results after surgery. They will tell you all they know currently & it’s all usually pretty accurate anyway. If on the off chance the final results do throw up something else, then the treatment plan will be adjusted to deal with it. It will be fine.
At my final results, the bc was graded 2 from 1 initially, but it made no difference to the treatment plan.
As ever, it’s the uncertainty when waiting when the mind goes into overdrive in trying to fill in the gaps, which is hard at this stage. We’ve all been there & have got through it.
ann x

[kathrynb]

Jas58 sorry should have added glad your treatment was successful and you are well. So kind of you t taking the trouble to reply to my post as with the other ladies. Xx

[kathrynb]

Hi jas58 thank you so much for your post. Particularly grateful to read as I thought I was calmer this morning but have spent the whole afternoon panicking. I think it might be because I spoke to my GP. One of the things that is concerning me massively is that although they have described it as DCIS intermediate because I have had nothing in writing I am scared that it will turn out to be more. The GP said he thought that was because they wait until I have had absolutely every test (I am having a mri biopsy and they are putting in markers) before giving you all the facts. They have said I can have a WLE or mastectomy at this stage. Do they say the same to everyone? Am encouraged to hear you know of people being treated at Addenbrookes and would be grateful to know something of their experience. I realise that panicking is futile and I am not sure why my mind is in this overdrive but it is! Thank you x

[Jas58]

Hi

i was diagnosed with high grade dcis in July 2016 and had a wle and 5 weeks of radiotherapy. Haven’t as yet had to have any further treatment. Just annual mammograms. Are you being treated at Addenbrookes.? People I know speak very highly of the team there. 

Glad to hear you are doing so well Ali😘

[kathrynb]

I just wanted to say thank you to all you ladies who have replied to this thread. Another day ticked off. Feeling pretty tired today probably due to raging emotions. I will let you know how everything pans out for me.

[Dizzybee]

Adele

My experience was similar to yours, everything took a long time to happen. Initial mammogram early June, finally diagnosed end of July, surgery 24th August, another op to get clear margins 21st September, started rads 30th November.

And that was only because I complained at all the delays, which were outside the NICE guidelines. So it took six and a half months in total.

I do have private medical insurance but never used it, the surgeon told me there was no difference between BHS and private care. In my area they were really overstretched to fit in radiotherapy in particular. And they were very blunt that I wasn't a priority., which was hard to take.

On the good side, I never waited more than three weeks for any operation, once I got the appointment with the surgeon. And two of my operations were breast reduction to my non cancer side for symmetry,  I thought they might have a long waiting list because it was cosmetic, but they treated me exactly the same as if it was the breast cancer.

[AdeleS]

Hello KathrynB

To answer your question by treatment if you mean first surgery then guidelines are 31 days from diagnosis i wld have waited 36 days or treatment after surgery well that varies on what type of surgery but the quickest i have seen on these boards after surgery is about a month or some 6/8 weeks 

I too am new to this but have learnt to manage my expectations and realise its not an overnight stop but a journey that we go on which isnt going to be a short one.

I pleaded for a sub cutemaeous mastectomy as wanted the lot out but was told even with that there is still potential of  5% being left in and  coming back and that the recovery time is so much longer 

I am having a wide excision via wire or what it terms i suppose a lumptechomy 

My journey at a top London NHS hospital has been bumpy and lengthy , i checked with a friend who was being seen privately and actually there is very little difference

I was diagnosed 7th Feb, Grade 2 Invasive and like you DCIS but grade 3with the cancer receptors being ER4 and HER2 3+

I then had an MRi 8th Feb, then another ultrasound 22nd Feb and had to chase them up for my followup for surgery which was last week 7/8th March with surgery this thursday 15th March - so 36 days where as my friend had her surgery in 28 days 

My next appointment is 27th March  i made sure i had this booked and if no further surgery is required then  my treatment is being proposed as  6 months chemo, 12 months herceptain and 5/7 weeks radio - however I like everyone else am dependant on what they find when they go in and do the surgery - and this regime might change - but my treatment is because of my particular cancer receptor type - i couldnt see yours?

What i am learning fromt this journey is our  breast cancers are as different as we are and there is not one package to meet or treat all but the progress that has been made over the last 40 years even last 8 years is astounding and I cannot be more grateful to breastcancercare for these boards and support from others

Yes its scary knowing we have this disease (virus) yes its life changing - Good Luck and Big Hugs