DCIS not sure how to feel
Helen40
Member Posts: 2 New Member
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.
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!
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Comments
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Hello @Helen40
Sounds like you’ve been through quite a lot you poor thing. I think in some way you choosing to have the implants was a blessing, as you found the cancer early. But I completely understand the aversion to surgery. Completely. I was in a similar situation, had to go back to have the nipple removed for DCIS after a nipple sparing double mastectomy. On the prep table I got a slight fever, was sent off to do a covid test and surgery was postponed another 2 weeks. I didn’t go to that one though cos I had anxiety as I didn’t trust the surgeon anymore. So I changed surgeons, had radiation on both breasts and am now healing so I can have the nipple removed during my exchange surgery. When the surgeon called to book a date I almost vomited. I decided I need to allow my body, mind and soul to recover before I go back for more. Your situation is more complicated as you need to go back to work, plus have the skin surgery to go as well. I think it’s important for you to have regular body and mind healing sessions. Whether through yoga, mediation, qigong, massages, baths, spa treatments etc, but give yourself some pampering and relaxation because it sounds like you are in dire need of it. All of us on this forum are I think. Don’t wait till the whole cancer thing is over to do it. It’s important to start healing now. Also, get yourself a free Mental Health Plan through your GP if you can. I’ve seen a psychologist a few times and it’s helped immensely. I saw a new one just yesterday and already feel better.Wishing you the best and hoping things ease up very soon 🍀🤗.Mon Xxx0 -
Hello @Helen40,
Sorry to hear your treatment thus far has been so grueling. Is switching from private to public health something you'd consider for the rest of your treatment? The cost savings would spare you that extra stress and, as a public patient all the way through, I can reassure you that our public health system is excellent. You'll probably get the same doctors who do the private work. Disappointing re that breast care nurse. I had one like that, but there was another one who is much more pleasant - so now I only deal with her. See if there is someone else available. @FLClover is spot on re getting your GP on board for support and a Mental Health Care Plan. Ask about any other local help you could access.
Good luck. I hope you feel better very soon.1 -
Hi @Helen40
Welcome to the forum lovely. What a shit fight roller coaster you've been on. Is there any chance you can swing yourself back to public? At least that would take care of the $$ bit until covid buggers off. You might be eligible for patient transport funding as well. You'd also get access to the breast care nurses and you might find that you will get a lot of support from the other staff. I work in the surgical ward (admin) and that's where I went for my theatre. Once I got over the fact that half the ward had seen my boobs
I really would not want to have been anywhere else. Even then I had a major meltdown on the second morning (quite common after any major surgery apparently) Plus they had computer issues so I was able to hop out of bed and fix that while I was there lol.
Anaesthesia and I don't mix well also. Violent vomiting and low blood pressure for 24hrs. Have a chat to anaesthetics and they might be albe to tweak the recipe. They did that on my return surgery and it was far better.
This whole thing certainly tests you to the max, it's undignified and most definitely includes a lot of pain. I've had a return weird lesion that's required multiple biopsies and another surgery. Eventually I found it a case of having to go full zombie mode for the most part and just go "somewhere else".
If it's any consolation (which I know it isn't) once you get through this mess there's not too much you can't handle in the future.
Hoping it all settles down a bit for you quickly xoxoxo2 -
Thanks for your comments ladies. I am not sure how to ‘swing’ back to public from private. I am very grateful that I do not need chemotherapy or radiotherapy but I think the realization of what I have been through has just started settling in these last 2 days and the tears are quite free flowing again. I do see a counselor this Saturday and I’m hoping she is helpful for me.My expander is uncomfortable and moving around, the public breast care nurse I messaged to see if she would see me, did see me, she had a feel and said ‘well of course they are uncomfortable and yours is all puckered and needs filling up’. I just felt like I should know this and how could I be so stupid not knowing this, thing is, if no one tells you these things, how do you know??? Same as with my plastic surgeon, she told me that I have to wait 6 weeks from my last tissue expander until I can have implants, again until she had said it, no one had ever mentioned it. I feel so useless and unsupported and unsure of everything and my memory is shocking and apparently that’s because I’ve had 2 general anaethetics close together and it will take 1-3 months to recover. Support of any kind right now would be lovely. Thank goodness for been able to remain anonymous on here and be able to say how you feel. X2
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Hi @Helen40,
I went private for my first surgery. Felt like you, very unsupported and unsure and uninformed. Then I changed surgeons and the whole game changed. I was reborn. Surgeons and other medical staff need to have a lot more than just surgical skills. In my humble opinion it might be worth seeing another specialist. All the best Xx1 -
@Helen40
Sounds like you didn't have enough time to process information and it's all so overwhelming. Don't blame yourself saying you should have known as there's a lot to process and come to some form of confidence in what's happening and acceptance.
It all takes time!
This link may help
https://www.bcna.org.au/understanding-breast-cancer/treatment/breast-reconstruction/
My treatment was in the private system and my surgeon had 2 breast care nurses who were extremely helpful. Mastectomy in May with expander inserted. Had fills along the way, he suggested panadol beforehand. My changeover to implant was October. Would've been sooner however I had an infection which turned out to be topical. My breast is now allergic to Sorbolene.
Take care0 -
Hi Helen,
I'm sorry you are having such a tough time. I don't know how you change from private to public but you could check with your GP.
In regards to DCIS, There really needs to be a consensus with the way everyone talks about DCIS. I did listen to a BCNA webinar with Jodie Lydeker the topic being "Psychological impact of early breast cancer" Jodie is a psychologist who also has had breast cancer. After her talk there was open question time, and this very question came up about DCIS and is it cancer. There was an example of a woman who suffered PTSD from being told she didn't have cancer. Jodies response was if your being treated by surgeons, oncologists or radiologist you do have breast cancer. The CEO of BCNA Kirsten Pilatti agreed that we needed some consistency and better education of medical staff. The discussion was that by telling people DCIS is precancerous it is meant to alleviate your fears and make you feel better. Trouble is with DCIS you can often need a mastectomy and/or radiotherapy and I think some people get tamoxifen too. So to be told you don't have cancer you have pre-cancer is confronting and confusing and makes you feel like a fraud.
If you look at what DCIS stands for, "ductal carcinoma in situ" you have cancer cells that haven't made it out of the ducts. Once I added this information with the message from Jodie Lydeker I felt I could confidently say and not feel like a fake while saying it, " I had breast cancer". My DCIS (diagnosed Dec 2019) was big enough that I needed a mastectomy, I chose a double with no reconstruction from which I have fully recovered and very happy with the decision I made. My only issue in this whole episode was, early on trying to justify a double mastectomy (to the handful of people I told) for precancer. Now I'm comfortable saying I had breast cancer as far as I am concerned I did and so did everyone else diagnosed with DCIS irrespective whether its high grade or low grade or what size it is (after all it's not a competition) . The emotions are the same and there is overlap in treatments, surgery (lumpectomy/mastectomy, radiation, hormone therapy.....). Lets hope BCNA can raise this issue and the emotional impact it can have on some patients, with the medical teams that on the whole do such a fabulous job of looking after us.
Take care and all of the best with your recovery.
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I work in a country hospital. Whilst I didn't have my surgery there I did have chemo. I had my surgery 500 km away in a public hospital.
I had bilateral with expanders also but I awoke with mine 3/4 filled. It was incredibly painful for around 6 weeks then suddenly it seemed better. It was the sewn in bra feeling that hurt and I think it was the stitches causing that issue.
My care at the public local hospital was very compassionate and caring. I think even more so being a nurse. Many other nurses have been through the same as me there too. In reality in small communities people know your business. I chose to share and bring understanding of what breast cancer takes from men and women. Whilst my personal struggle is confined to here, I do choose to share with many. Getting the message out there was my mission.
So...you'll be respected in public despite being people you know. I had many nurses whusper to me they were survivors and I'll get through this and I did.
The pain will get better.
Ask if you can exercise, I found going to the pool and doing arm rotations really helped and gave me distraction and relief. Talk to your boss and see if you can do alternative duties. I took some long service leave as I needed chemo.
Hope things improve soon.
Kath x3 -
I can't add much to what others have said except to stress what @primek has written. If 1 in 8 (or 1 in 7 as now is being said) Australian women will be diagnosed with BC, it stands to reason that most people around you have direct of indirect experience of it. I doubt that anyone is going to judge you or have anything but compassionate feelings for what you are going through. I don't work in the medical field but since going through my treatment I have since heard of a number of women in my workplace who have had BC too - they just didn't feel comfortable with others knowing and prefer to keep it quiet. I understand this but when it comes to treatment, you need to go for the best you can afford and it sounds like that means public. And your colleagues may want to look after one of their own that little bit more.4
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There is nothing wrong with the public system............if you can accept a looooooooooooooooooong . long wait to get things done! Sorry to say, but that is the truth. I wish you the best, but best to change to private if time is of the essence.
I have first hand experience of the public system, and I would always suggest if people want timely treatment, then go private. Unfortunately I don't pay for private cover, so I don't have the option, so I go public. i waited 2 months for surgery from my diagnosis. People need to be aware of the timeframe and the difference between public and private. We live, but we do have to remember the anxiety that is caused in the meantime. Just saying!
On the positive side, I am here to give my opinion.
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