12-07-2018 12:01 AM
Hi Jane, Many thanks for that, I'll follow your suggestions! It's difficult because I do feel a bit rushed but on the other hand there's no point in having delays to treatments if they can be avoided...
I'll let you know and meanwhile will be sure to enjoy my last 'intact' weekend away!
11-07-2018 08:58 AM
Wow Smodge, what a coincidence, same "issue", same treatment!
I strongly suggest you talk to your BCN further about the op (mx & recon) - see if she can show you some pictures of mx/recon done by your surgeon (mine has done, it helps) and/or put you in touch with ladies also operated by the same surgeon, but also take advance of the freecall on this site to talk to a nurse, and also on Macmillan org forum - read the forums, there's also freephone numbers there too. If you hadn't already checked, if you go to the support part on this site there are lots of brochures you can download or order (free to order, quick delivery) to read up about different procedures/advice etc, very useful.
Whilst it's good that your treatment is progressing quickly, please don't feel rushed into a decision you're not comfortable until you have all good info, on the other hand put your trust in your surgeon and BCN.
Llandudno will be fabulous, even in the height of summer and busy. My boyfriend and I had second holiday together in early 2002 was in Llandudno for a weekend event by one of our favourite singers and despite the weather being awful (it was January) the sea air was wonderful. I wish you an extremely happy time, and if you want any more info about my procedures so far and upcoming, or any thoughts about it, feel free to message me. I'm by no means an expert but have learnt a lot in the last couple of months and I do so much research to help me understand things as best I can.
11-07-2018 08:48 AM
Glad to hear the lymph nodes were clear and you have a plan for treatment all set up.
My situation is similar, having been diagnosed 2 weeks ago with DCIS in my left breast. I had sentinal node removal op last week and am awaiting the results now. I need an MX and want an immediate reconstruction so I saw my BCN yesterday and we went through options for the recon and I wrestling with that issue at the moment.
Unfortunately I can't have the DIEP I wanted (due to my BMI being a bit too high) so it looks like the best (or at least safest) option is the LD flap with lipo filling, which is what you've opted for. I can have a TRAM but it's much more risky and both procedures come with muscle weakness as a likely long term outcome, which concerns me somewhat. It's hard to know which one would be best. Tbh I like the idea of the mini tummy tuck which comes with the TRAM (some small compensation for the loss of a breast!) though obviously that's not a good enough reason in itself to choose that option! Apparently I need to make a decision in the next day or so, so I'm feeling a bit stressed about the potential ramifications of my decision and my head's a bit mashed. The op will probably be in a week or 2's time. (apparently they act quickly in Chorley, which is great in many ways, but it does feel a bit like I'm on a runaway train!)
Anyway, I hope your op goes well in August. I think it's a good idea to schedule it around the wedding and little weekend get away because It will give you something fun to focus on and you can have a nice break before the other 'fun' starts! I'd had a similar thought and have booked an overnight break this weekend in Llandudno, so I can chill out by the sea and have a bit of quality time with my hubby before it all kicks off!
If I were you I'd definately take the time off to relax before your op (it's the least you deserve) but obviously you know what's best for you.
05-07-2018 01:51 PM
Lymph nodes are clear (3 were removed) so it's still just DCIS. Had more discussion with my surgeon about the mastectomy and options for reconstruction. Decided on an LD (back flap) recon, no implant, and then further surgery at a later date with lipo filling (taking fat from my tummy and injecting into the breast). This would be done 3 months after the mx op and potentially again another 3 months later depending on how the size goes, with an aim to try and get the new left breast to a similar size/shape as the good right one. No guarantee this would give immediate symmetry but more natural and less risk than implants (I know many women have successful implants but I'm not so keen on them). I could always choose an implant as the last option if the others don't give a result I'm comfortable with but it feels better to me to do it over time and see how it goes. Surgeon doesn't think he can get enough muscle/fat/tissue from my back during the mx/recon to match my new left breast to my remaining right one hence the lipo option.
And unless anything unanticipated is found during mx, won't need RT or chemo and probably not any hormone treatment either!
So mastectomy is booked for 16th August. 4-5 days in hospital and 3 months recovery. Something to look forward to. Main thing is a) getting rid of that nasty little (5cm - little?!) invader and b) knowing when that will happen. Despite going private it does feel as if it's been a long journey so far but I worked out it's 65 days since my first mammogram, 42 days since the diagnosis of DCIS and 14 days since the SNB. So just another 43 days to wait. I could have chosen 30th July but that would mean me and my boyfriend wouldn't be able to attend his niece's wedding at the seaside on 4th August where we've booked the weekend down so that will be a nice pre-op treat.
Seeing my GP on 17th July when my sick note ends so will try to decide by then if I want to be signed off until the op (and of course after) or go back to work for 2-3 weeks. I work from home so it's not physical but very busy and stressful. Might decide to chill out and relax for those weeks and investigate the Latissimus Ladies Luncheon Club - my BCN gave me a card with contact details for 2 ladies who had LD flap recon done by my surgeon.
Onwards and upwards!
14-06-2018 04:36 PM - edited 14-06-2018 04:36 PM
Sentinel Lymph Node Biopsy planned for 21st June to ensure that nothing has escaped from the DCIS. Not expected that it has but anyway.
Assuming all ok on that, most likely outcome is mastectomy with LD flap reconstruction. My BMI is over the recommended threshold for DIEP and I don't fancy 100% implant only, so I can hopefully get a somewhat naturalish "new" breast.
Emotionally fragile, now working part time until the little op then will be off for a week or so to recover (even though it's a short op, it will be my first ever operation under general anaesthetic - I'm not fit so going overboard to take it easy for recovery just in case).
Despite fragility in emotions, I have lots of family, friends and work support, and forums such as this are a mine of wonderful information, help, support and advice, so thanks to all of you.
09-06-2018 02:51 PM
Hello Jane and Dizzybee,
thank you for the recommendation of the book Dizzybee - I ordered from Amazon and it arrived yesterday - I had my mastectomy and Diep over a year ago but the book will still be useful to me.
My DCIS was over 5cm and high grade. I have a copy of my pathology report and I see the book will explain some of the technical stuff to me.
I'm having the symmetry surgery to my good side in a few weeks, hope you get on well Jane,
best wishes, girly x
09-06-2018 10:38 AM
Saw the BCN yesterday, the DCIS is the full 5cm so now looking increasingly likely for a mastectomy and if so then to decide if recon at the same time. Inclined to go for that. Will get absolute confirmation when I see my consultant surgeon on Wednesday. My boyfriend reckons to go for that, have a new boob as a "battle trophy" that I won, rather than seeing a flat area and a scar as a battle loss (so obvious he used to be a soldier!). Good advice. I think!
Trying to get my head around all this, but grateful there's so much support from family, friends and places like this.
Going to chill and try to have a relaxing weekend
07-06-2018 03:32 PM
It's Emily here from Breast Cancer Care.
Thanks for sharing how things are going for you at the moment. A few of our telephone volunteers had a DCIS diagnosis and similar treatments to those being discussed with you at the moment (they're now a few years past their treatments).
Feel free to let me know if you'd like to speak to one of them over the phone. If you do, you can either send me a direct message through the forum with your name and number, or you can call us on 0345 077 1893.
Wishing you all the best in the meantime.
Emily at Breast Cancer Care
05-06-2018 05:01 PM
Thanks so much Dizzybee for your reply, it means a lot, and by no means am I the only person going through this, and I guess I'm luckier than some women who have it worse than me so my heart goes out to them.
I've seen that book mentioned a few times so will investigate it, and as it's avaialble on Kindle will probably go for it as I love having my Kindle in my hand.
I had my 4th biopsy (the 3rd under mammogram) this morning and it was painful trying to get my breast in the right place but the nurse/radiologist were fabulous in their care. Made me feel very anxious though as it really hit home what I'm starting to go through and the potential anxiety of an operation - or maybe more.
At least I have a date to see my consultant on Wednesday 13th June and hopefully he can then tell me the treatment and date.
I already have an appointment booked with my GP for 18th June. By then I should know date(s) and a bit more how I'm feeling so can discuss with her about upping my dosage of Citalopram and signing me off work (it's a stressful busy time at work) depending how I feel - decided to book just in case, can always cancel if I feel I don't need help at that point (fingers crossed). I get tired easily as it is, expecting more tiredness to come either through things being done but mental tiredness also.
Anyway, again thanks for your reply and I hope that two years on you're feeling ok physically and in your mind.
Cheers and hugs,
05-06-2018 11:38 AM
My DCIS was also about 5cm, so I had to decide whether to have a mastectomy and reconstruction, or a therapeutic mammoplasty (basically breast reduction surgery that also removes the cancer.) I opted for the therapeutic mammoplasty but was told I could still need a mastectomy depending on the results.
I'm happy with the cosmetic outcome, I needed a margin shave plus two reduction operations to the other side for symmetry. I had radiotherapy and take tamoxifen.
So I'm almost two years on from being in your shoes, it was a huge shock to me and feels like it was a bit of a journey to get to here. So give yourself time to process all of this, I think DCIS is a difficult diagnosis to get your head round, because on the one hand you're told how lucky you are to have such a favourable diagnosis, but on the other you have a large area which needs to be removed.
Someone else recommended a book about DCIS, written by an Australian professor of breast cancer. I really wish I'd had it when I was first diagnosed. It's by John Voyages and called DCIS of the Breast, Taking Control.
It's hugely reassuring about the outcomes, I found it really helpful. Its on Amazon and available on kindle.
In emotional terms, I did end up back on antidepressants, though I'm not sure whether that was down to the breast cancer or the effects of tamoxifen. Everyone is different, but if you need to up your dose for a while, I wouldn't worry. You need to be kind to yourself while you get through the next few months, accept all the help and support that's available and don't push yourself to be back at work and back to normal. We all take our own time and it isn't a process that can be rushed.
Sending you a hug, and hope everything turns out well for you.
04-06-2018 01:34 PM
I was diagnosed with DCIS 10 days ago.Quite a surprise.
Went for my first routine mammogram 2 days after my 50th birthday end of April. Two weeks later had a letter to go back to hospital. Radiologist showed fibroadenoma in right breast and calcifications in both. Had a biopsy under ultrasound on right breast, then biopsies under mammogram on both left and right breasts. Five days later was given the result of breast cancer/DCIS in the ducts of my left breast, about 5cm in size, with expectation of op then radiotherapy later. Told that chemo is not required, nor tamoxifen, nor should I need a mastectomy.
Am back to the hospital tomorrow morning for a biopsy. Only a small part of the 5cm has been tested so they want to check more of it to prove the result. Then meeting with BCN on Friday for a fuller discussion and planning of treatment and will get a date to see the consultant/surgeon soon. Am invoking my private medical insurance that I have through work. That in my theory frees up an NHS bed for someone who doesn't have insurance.
Probably I'm in denial and/or it's not sunk in yet. I went on a business trip to Mexico the day after diagnosis and only arrived back yesterday with biospy planned tomorrow. Being away kept my mind occupied with work so no time to fret.
Have done a fair bit of reading about DCIS, think I'm not sure what to expect until I have the fuller meeting with BCN on Friday and whenever the meeting with the consultant/surgeon is. Not really worrying although sure that will come at some point. I really hate injenctions and needles but can now just about manage local anaesthetics without freaking. Never had a general anesthetic and never been in hospital so surgery would be my first.
I guess I'll know more on Friday what is planned. Kind of think my BCN has got some details wrong, that it's not what she said it is, that it's less. Brain isn't expecting more! Most likely my feelings are normal, I'm still in the "need more details" stage to process any of it - I'm one of those people who likes to know all the "ins and outs" details!
More worried that it will exacerbate my anxiety, stress and depression as 2 years ago I was off work for 3 months and have been in Citalopram anti-depressants ever since then. But also if radiotherapy is required, wondering what effect that might have on me physicallyand emotionally. Will quite happily take time off work for any recovery or chance to relax, my employer and boss are supportive. As is my boyfriend and famiy of course.
Thanks for any hints or tips you can give about what I might could expect to happen, have read a lot of posts on here and so much useful info and care Will update this threadas and when I get news.