I was diagnosed with DCIS on 8 April. Due to the size of the calcification, a double mastectomy was recommended. And surgery is now scheduled on 20 May. The waiting is hurting me. I have been having some pain in both of my breasts and also under my left arm pit. I’m really worried that what I’ve got is not just DCIS. Suddenly, everything seems to be wrong with my body, I have ringing in my ears, my legs are having pins and needles...

I got my CT scan results this afternoon, all clear! Such a relief! While I still have occasional pain or pins and needles in my legs, I feel calmer now. Just one more week of waiting for the surgery. Thank you for all your support!

@lovemoon You’ll have a better idea of what you want/need after the first treatment but the following may help:*Have someone to take you to day oncology and home first time - you may be absolutely fine, but just in case.*Many encourage drinking lots of water, ‘to flush through the chemo’ but since no-one told me to at the time, I just drank normally. Being well hydrated is important for getting to veins, but having to go to the toilet while on a drip is a pain in the neck! I sprang a leak once in the toilet and had to be rescued by grinning oncology nurses in gumboots and rubber gloves! Also, I wanted to be sure the chemo was doing its work! *Oncology nurses are a special breed of wonderful - they’ve seen it all, usually are very funny (humour really, really helps with all this stuff!) and will look after you, check you beforehand. *You can read, doze, listen to music or whatever suits - remember one arm will be a bit occupied. You’ll probably be offered a drink and a snack. *Count the treatments down - every one completed, one less to be done. It may pass more quickly than you imagine. Side effects vary - talk to your oncologist about what to expect, whether you can use cold cap or other cold treatments to protect hair and extremities. Best wishes.

Thank you @Afraser @Cath62 @Julez1958 and @arpie Thank you for all your kind words. I have talked to my surgeon about 10 days ago and she has kindly organized a CT Scan for me tomorrow. She was confident at our appointment that I just need to do the surgery and the test afterwards will tell if there’s anymore surprises. But given a 4 weeks’ wait (from the appointment to surgery), all kinds of dark thoughts come up. So, I called the surgeon up and told her I wanted to do something, and hope that I’ll be more relaxed going into surgery.I’m still working full time, my supervisor and colleagues are all very supportive and working helps to take my mind off silly thoughts. But by weekend, especially on Saturday when hubby has to work (and I’ve decided after the diagnosis that I don’t work on weekends), then, all dark thoughts keep flooding in.@Afraser you are right, I need to trust my medical team.@Cath62 I had my distress with Dr Google the first two weeks, I no longer go there now😅@Julez1958 That’s exactly how I feel, radioactive beacon inside me! Mine is intermediate to high grade DCIS, that’s why it’s also causing me distress. Hope I’ll be calm like you after the surgery.@arpie good to know that I’m not the only one with this tinnitus problem. It’s so annoying especially at night when you try to relax. I’ve been doing exercise after work to help me relax (I do hot yoga but am hesitant to go to the studio since the pandemic). My husband is very supportive as well as my family. But in a way, this journey is still very much a journey of my own. I will check out more resources on this forum!Will keep you all posted of my CT scan results (another few days of anxious waiting for the results).Thank you for the love and support❤️

Thanks @Cath62 I’ll keep myself busy! ❤️

Oh darl ☹️.My pathology post DMX also showed a micromet in one sentinel node. The surgeon said I might need to do chemo because of that, and also radiation. Both my medical and radiation oncologists highly disagreed with him. Medical onc said chemo was recommended only due to my young age, but he was very comfortable with me not doing it, so I didn’t. He said the micromet was not a threat at all. The radiation onc said the only reason I needed radiation was because of the surgeon’s sloppy work. He left unclear margins that they saw on the CT scan for radio prep, but he denied it. So my onc and new surgeon both said it might be a good idea to have the radiation to get rid of any possible cancer cells in the suspicious tissue left behind on both sides, NOT because of the micromet. She was actually very annoyed that he was giving me radiation advice, since he’s a surgeon and that’s not his field. Anyway, I did have the bilateral radiation, skipped chemo and on hormone blockers now. 2 years NED 🍀♥️.

Everything seems to be wrong | BCNA Online Network

31 Replies

lovemoon
Member
4 years ago
Yay! @arpie it’s good news and really give me some peace of mind! I’m in Melbourne, will see how to add that to my profile, I’m using my phone, so, a bit hard to navigate the page. Thanks for the link, I’ll definitely need it! Thanks xx ❤️
lovemoon
Member
4 years ago
@Mez_BCNA Yes, this is a great and supportive community! I’ll check with my surgeon if there’s any access to a breast care nurse. Will check out the McGrath Foundation too. Thank you so much for the information. ❤️
lovemoon
Member
4 years ago
Thanks @Cath62 I’ll keep myself busy! ❤️
arpie
Member
4 years ago
Wooho! That is Great news @lovemoon and peace of mind for you xx.... yep - just take every day one at a time .... and the next week will fly by xx. You'll be amazed at how much better you feel after the surgery!

What area do you live in? Town/City? You can put it in your Profile - any members living nearby will be able to assist you with existing services in your area - and maybe even arrange a meet & greet, covid willing!

In the meantime, check out this thread from last year .... it covers a whole lot of areas in the forum (your garden, pet, art & craft & even some 'funny threads' for a giggle!) It also has links to what to take to hospital with you, and questions to ask your health team ....
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care & all the best
Mez_BCNA
Community Manager
4 years ago
@lovemoon you have received such wonderful support from members already, its is great to have this community to support you during this time. I thought I would add to the responses as I noticed you mentioned that you didn't have a breast care nurse; you may like to ask your hospital if it is possible to be referred to one or you can also look on McGrath Foundation’s breast care nurse directory to find a breast care nurse in your local area.

The My Journey article 'DCIS and your treating team' may be helpful to give a snapshot of the multidisciplinary team that may be part of your journey. In addition there is a great article on 'Emotional wellbeing and DCIS'.

https://myjourney.org.au/article/2858
https://myjourney.org.au/article/2895

Please do not hesitate to contact our Member Support Team 1800 500 258 if you have any questions. Take care.
Cath62
Member
4 years ago
Great news @lovemoon. It's step by step but you've had a big win today. Keep busy till that surgery. Lets us know how you are if you want to.
lovemoon
Member
4 years ago
I got my CT scan results this afternoon, all clear! Such a relief! While I still have occasional pain or pins and needles in my legs, I feel calmer now. Just one more week of waiting for the surgery. Thank you for all your support!
lovemoon
Member
4 years ago
Thank you @jennyss
jennyss
Member
4 years ago
Dear @lovemoon,

from jennyss in Western NSW
lovemoon
Member
4 years ago
Thank you @Afraser yes, work does help!
@iserbrown thanks, I’ll check out the links
@Locksley yes, it’s a club no one wants to join, but so good to know that you are all out there! And thanks for the tips!
@arpie thanks for the good wishes!

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