DCIS - normal feelings?
Hi everyone, I was diagnosed in April this year with non invasive DCIS. I had surgery to remove growth, the radiation which finished in August. I worked mostly through the surgery and radiation treatment. But now I am feeling like I am having a breakdown. I am so angry and emotional and this is not me. I am post menopause (I went through early menopause due to surgery to remove an ovary) and I not on any hormone treatment. Is this “normal” to feel angry and emotional? I am seeing a psychologist. But I feel like my whole world has changed and no one quite understands or get what I have gone / man going through. Since April I have had only one week where I have had no medical appointments. I am completely drained. And guidance greatly appreciated. Xo
DCIS not sure how to feel
Long story so I do apologize. In Nov 2015 I took a massive step of having weight loss surgery. In June I went to see my plastic surgeon in Sydney for my pre op to having loose skin removed due to my severe weight loss. Now just only about 3 weeks prior to this appointment had I had a mammogram as part of the surgeons request prior to breast implants. 10 mins before this pre op appointment I got the diagnosis of DCIS, I was told I was ‘lucky’ that it’s very early, didn’t feel lucky. Needless to say I had to put all my planned skin removal surgery on hold. I saw a general surgeon who explained what DCIS was and due to my extensive DCIS and my small and known hypoplastic breasts I was advised to have a nipple sparing mastectomy. I was in shock, I work at the only public hospital in my town and didn’t want everyone knowing my business so opted to go private. Little did I know that I would not have access to a breast care nurse or any help at home afterwards (we are British and have no family). So I had my mastectomy and expander filled with air, and lymph nodes removed, Jesus wept no one prepared me for how much that lymphcintograpghy would hurt, I cried, no mean feat for a 40 year old women to not be able to hold herself together, I felt quite ashamed but was told I had done very well as most women swear or scream the whole Centre down!. Anyway I had terrible post op nursing care, had huge amounts of skin reactions and no real follow up care. Went back to see the surgeon for my test results to be told that even though they had taken 5cms of cancer away the margins were at 6.5cms and included the nipple so 2 weeks after the first op I had to go back to theatre. Again I had my expander filled with 200mls of saline. No one told me how painful this thing is and I now have to endure another 150mls put into it this Friday on my own as my husband can’t be at the appointment to support me and I’m so scared about it. I have contacted my local breast care nurse who doesn’t really want to see my as I’m classed as a private patient not public but she said oh yeah they do move and are uncomfortable and you need yours filling up ASAP. I’m left feeling, well I don’t know really. I have an appointment in Sydney with my plastic surgeon but no idea how I’m going to get there or afford to get there and arrange to have the kids looked after as both are under NDIS as have special needs. Our business had to stop for 8 weeks thanks to COVID-19 so all our savings have disappeared. I know I would of had to go to Sydney anyway eventually to see her to discuss implants etc but I think it’s more all this emotional stuff and the anxiety over having to come out of more anesthesia is giving me severe ‘I can’t do this anymore moments’. The expander is so uncomfortable and I have to go back to work as a nurse as I don’t have much more leave. I have nerve pain and a seroma too. anyway, this is just true tip of the iceberg. Sorry for the long rant!
Was diagnosed 27th November 2019 I'm in some kind of denial
My story actually starts when I had my 2 yearly mammogram which was in October this year. I'm one of those people that when some test needs to be done I do it. This time was no different but deep down I felt odd about it for some strange reason. All the other times I was of a lower weight but this time I was heavier and of course I blame the "fat for everything lol". Anyway went to the appointment the ladies there are awesome and they remember you which is great and non judgemental which made me feel a little better. Ok had the mammogram and went home. 2 weeks later I got a phone call from the Breast Awareness clinic at Fiona Stanley Hospital (in WA) saying that I need to come in for an ultrasound and maybe a biopsy. That is when I went into semi shock... I made the appointment which was on the 26th November. The day came I went to the appointment the staff there were awesome the Dr she was brilliant. Had another mammogram, then an ultrasound and after a few minutes was called in to have the core biopsy. I thought to myself my poor right breast. When that was all done I made an appointment for the following day. Couldn't sleep that night so I was up googling core biopsy, ultrasounds whatever I thought of I googled it. Finally crashed. Woke up travelled to the hospital and got there 1 hour early. Time of the appointment the Dr called me in and she was so calm and then she told me. The results came back Grade 1 DCIS invasive breast cancer. Up until she mentioned the C word I was calm but then that opened the flood gates and I just broke down. She reassured me that it has been caught early and the treatment will be surgery, radiotherapy and hormone therapy. I thanked her and made another appointment to see the nurse, surgeon. When I walked out of the reception the ladies that I saw the day before asked how I went I told them and I just broke down. But we all hugged which made me feel somewhat better. I got home and told my son. As I am his only living parent (his father died in 1995) this shook him but as he said "Mum you are going to kick this in the ass hard" then I lost it again. Fast forward to 12th December (yesterday) when I saw my nurse and surgeon. My best friend whom I have know since we were 5 came with me for support as well as someone to listen in case it went over my head (still in denial here). The surgeon is a lovely woman she told me what was going to be done and how I have to go the day before I go in to hospital to have some dye injected for the lymph nodes. Also explained the surgery and what options there are. Also about the radiotherapy etc. I still cannot believe that I actually have breast cancer. How in the space of 2 years from one mammogram to another this happened. I said to the nurse I am blaming it on the fat.. I have to blame it on something. The only person I have not told is my Mum. My Mum is 96 and I have actually put it off since 27th November but I will tell her next week when I take my son with me and maybe this will mend the bridge that has broken between them. There are in my family my Mum, my Son and myself (my Dad passed away in 2008) so as I said to my friend this has to bring us together or there is no hope. To say I am not scared would be lying to myself, I am petrified beyond words. To think that I am a strong person like everyone says I am deep down I am a weak jelly baby. I am angry. I want to shout at everyone to back off. I sometimes want to get in my car and drive far away and forget about this which feels like a nightmare. I think it is all a bad dream and I will wake up and find all is well.
Changing life
It has really been a challenging 2 months for me and my life is changing so fast. I am 47 and was diagnosed with a 1 cm DCIS, end of October. Had a lumpectomy and a re-excision in November, No micro invasion. BS then referred me to RT. My gut feeling is to skip RT and have bi-lat Mastectomy due to family history of bc. I met up with a PS to discuss reconstruction Also met up with the radiologist oncologist. My mind is just spinning because I was afraid that I was making too drastic a decision to have bi-lat mx. I think I was less scared of having a mx compared to making a wrong decision. Fast forward and 2 days ago, my genetic test came back positive for BRCA 2 abnormality. This now takes the decision out of my hands and I will have a bi-lat mx for sure. I am surprisingly relieved that I now have certainty that a mx will not be a wrong decision. But I am now sad and worried if I passed this terrible gene to my kids. They are currently too young for testing. Now my mind is also filled with making plans for more surgery to remove my ovaries and tubes. And I am reading up about all the terrible side-effects which I will have when my body becomes suddenly menopausal. On top of that, due to my genes, I have increased risk of pancreatic cancer which is difficult to screen and is normally found out too late. It is funny how one’s life can change in a blink of an eye. We really must live our lives everyday like it is the last. Treasure every moment. Don’t waste time being angry or negative or cross. Count our blessings and look for the silver lining behind every cloud.
Help sleeping/coping techniques
Hi All. I am currently 2 weeks post op for mastectomy and reconstruction using own tissue after DCIS diagnosis. Everything has happened so incredibly quickly. As much as I thought I was prepared for everything that was going on have been totally rocked emotionally by everything that has happened. Has anyone got any suggestions as to coping strategies for sleep. I find this is when I struggle the most. I don't regret the operation at all and have been really happy with the out come. Just feel totally unprepared for the emotional roller lasted that has been the last few weeks and just need to take back some control over my life. Thanks in advance.
Newly diagnosed, waiting for sugery and scared
Hi, my name is Libby and I'm 41 and diagnosed with ILC and DCIS in my right breast early November...been prodded, poked, squeezed, pushed for the last few weeks and by the sounds of it a lot more to come. My sugery is booked in for 3 December and at the moment the hardest thing I am finding is knowing that I have cancer in me and I have to wait till Dec to get it out...I am so worried that it will spread in that time...but I know after visiting my specialist several times that there are a lot of women out there just like me waiting for their sugery too. I am having a lumpectomy and hoping that results come back after sugery in a positive light...that would be a nice xmas pressie...I have 5 children aged 16, 15, 10, 9 & 7...I have told my older children but am not quite sure what to say to my younger ones...friends are telling me not to tell them that I have cancer because I will simply worry them unnecessarily but would rather get advice from women that have experienced what I'm dealing with...so any thoughts would be appreciated. I am an earlychildhood teacher and have left work whilst I deal with this...a lot of people work through their entire treatment which is amazing..but I know in myself that I need to take time to walk on the beach, enjoy the sunshine, breath the air, spend extra time with family, bake biscuits lol...basically wrap my head around what is going on...I still think I am going to receive a phone call telling me it is a mistake...I feel lazy that I'm not working...I would perhaps consider working but the face to face contact with the kids is too much (some are aggressive). I have been reading the blogs everyday and end up crying...I just can't stop crying sometimes...I put on this brave face for the kids and my partner but I am so scared...I know everyone says it's not as bad as you think and stay positive but at the moment I guess I'm having a down day...hope I don't have too many of them. Ok, well thanks for listening to my waffle everyone :-) Libby