I was diagnosed with low grade DCIS in my right breast in Nov 2019 and had a mastectomy in Jan 2020. I am 38 years old. I saw 2 specialist and both recommended a mastectomy because I am small breasted. Had an expander put in, awaiting for reconstructive surgery which has been postponed due to covid19. I am now clear without needing further treatment. My surgeon/breast care nurse/GP all refer to DCIS as pre-cancer and I struggle with this immensely because I need to feel that the choice I had made was justified and worth it. I lost my breast, it may be small but it was mine. This is not just about losing my womanhood, I felt I lost a part of me that made up the person I know myself to be. Because of this word I don't feel like I have saved my life, I didn't even have cancer. I know I should be grateful that I didn't have to go through radiation or chemotherapy or take any meds but to me a mastectomy is a very drastic treatment. How do you even explain it to other people? Nobody knows what DCIS is unless they have it, do I say I had pre-cancer? Is it wrong to say I had breast cancer? 5 months on and this is still keeping me from moving forward. At yesterday's Psychological Impacts webcast, someone asked Dr Tottman this very question and I was basically yelling at the screen "this is exactly how I feel!" So I now know there are others who are just like me. I hope to hear your stories and thoughts about how you are dealing with this particular issue.

Hi averi I totally agree with you and don't understand why something which has the word "carcinoma" in it is described as pre-cancerous. When I was told I had DCIS by the surgeon and it was "precanerous" I went away from the hospital appointment recently really relieved. I now need to have a mastectomy as after two lumpectomies there are "no clear margins" and this was "unexpected". The final straw came when my poor husband who had come to my appointments with me bless him, said "at least it's pre-canerous" and not really feeling in the mood for this I replied "Do you think I would be having a double mastectomy if this was pre-cancerous or words to this effect... I too was pleased when this issue was brought up on the Webcast the other night. As far as I'm concerned Breast Cancer is Breast Cancer whatever they decide to call it and if it's serious enough to lose a breast, its serious. Be glad you got rid of the breast, hard I know as I have recently shed many tears over having to lose both of mine soon but they have become a threat to my future and as far as I am concerned they have to go. Take care and all the best with your reconstructive surgery and healing x

hmmm...can't say too much but I overheard a conversation between a surgeon and a reg not too long ago. They were discussing calling a lady back for better margins on a dcis lumpectomy case. Surgeon wanted the person back sooner rather than later. Reg questioned surgeon regarding the urgency (during covid when non urgent cases were put on hold). The answer came back as "never underestimate DCIS. It is not to be trusted... ever" All the best lovely. xoxoxo

Ductal carcinoma insitu means cancer in the ducts. It has not yet infiltrated but at any time it can and become an enormous untreatable. It is ore invasive but not pre cancer. It is cancer. So many woman have it removed and find it has started to infiltrate. I went through chemo with women who had local infiltrating recurrence from dcis lumpetomy. They have since had to endure chemo and bilateral mastectomy.You considered and made your best choice based on information. Trust in this. X

Dear @averi i didn’t have your problem - I had a clear, aggressive tumour with what looked like a lot of affected lymph nodes. Turned out only one node was malignant but 17 went, along with my breast, with some long term side effects. Why? Because it was too risky to leave them there. Just as it was too risky to leave your breast. Absolutely no-one is expected to feel grateful for anything to do with cancer. But my own experience says you may, further down the track, feel lucky that you got the early warning light. You are still you. A little battered maybe but not diminished. Grieve the loss by all means but remember grief is a step on the road (to acceptance) not the destination. So much life still to live - look forward to it. Best wishes.

Thank you @Rabbit2020 for your story and what a journey you have been on. I am so glad to hear there are other women who feel the same way. I don’t feel so much alone now. @NewBoobsPLS will you please thank your dear friend @Elle_V92 for me? It was her question which had been heard by many that prompted me to finally join this network which I was encouraged to do but hesitated. Now that I have I think it’s one of the best things I did for my breast cancer journey. Thank you everybody including @Jwrenn and @Sister. I feel you all have given me the validation that I needed so much. Besides this war of words part, I do understand it is not their intent to make me feel what I had been through any less significant and I do feel very lucky to have found my medical team (another story there) as they have been wonderful in every other aspect and I am confident in my oncoplastic surgeon with my reconstruction which is now back on track. Hopefully I’ll be on my way to heal soon, physically and mentally.

Still struggling with the word pre-cancer after DCIS mastectomy

averi
Member
5 years ago
Thank you @MBall
So after one year, do you still think about the trauma of the bilateral mastectomy even though it was the absolute right thing for you to do? Certainly there are times I feel glad mine was caught early and a mastectomy was something I had to do to secure my future. One of those times was recently when I heard about the passing of Kelly Preston. I felt really sad. You can have some of the best doctors in the world and the best care in the world but still die within 2 years! How can this happen in 2020?
I am a private person, I am not on any social media and definitely not one to make announcements. I work at a large company, considered as a big family and there’s a Facebook page with almost 300 members. I wrote a message to share my news and asked a friend to post it for me after my mastectomy when I was off work because I’d be an emotional wreck if people were to come up to me. Why did I do that? The real reason was to publicly thank a friend who had been and continue to be there for me every step of the way. She deserves to be acknowledged. Of course, she doesn’t know this was the real reason. I didn’t say much about myself, just that I was diagnosed with breast cancer and I’m taking time off work to get better. The response was amazing and filled my heart. When it was time for me to go back to work I questioned myself if I had done the right thing by sharing because I was extremely anxious about seeing all my friends and colleagues again. I felt exposed. Everyone was really respectful and I found out some of my female colleagues had their first mammogram as the Breast Screen van was at our workplace and they said it’s because they heard about my diagnosis. What I’m trying to say is, it really is scary to share something so personal so only do it when you’re ready and do it for yourself or someone you love like I did. You may feel unsure afterwards but I can guarantee someone will hear about your story and consider having their breast checked.
MBall
Member
5 years ago
Hi @averi
i totally get where you’re coming from and have been through the same thing. I was diagnosed 1 year ago today with DCIS at the age of 36. My surgeon said to me that in Australia DCIS is considered cancer however anywhere else in the world they class it as a pre cancer. Saying that since then I have still been told by others that it is a pre cancer 🤷🏼‍♀️ it is definitely confusing and hard to know where you stand. I had a lumpectomy and re excision but still had cancer cells on the margin so was told I needed a mastectomy. I chose to have a bilateral mastectomy and immediate reconstruction with expanders. They also did a sentinel node biopsy where they took 2 lymph nodes one of which they found 8 tumours in. I am now on tamoxifen for 5 years.
I actually wrote a post to put on my social media to raise awareness but am yet to post it. I’m not one to shout these things to the world but at the same time if it can help even one person to get checked i would be happy. Now to be brave and actually post it haha
One thing I’m not sure of is DCIS included in the 1 in 7 stat? And is it 1 in 7 or 1 in 8 women that will be diagnosed with breast cancer??
I wish you all the best in your journey @averi. You’re not alone. If only things were clearer xx
Afraser
Member
5 years ago
Brave battler - a lazy, supposedly empathetic description that makes me cross. For many, ‘winning the battle’ involves a bit of luck, as in you found out early, the medication works for you, the side effects aren’t too severe etc. Brave? I have always adopted the Bravery Council’s definition of bravery - ‘taking yourself from a place of safety to a place of danger to assist another’. It’s the conscious volition that marks bravery - I don’t know anyone who chose cancer, or who might not dodge it given an option! Tagging you as ‘brave’ (or, worse, a hero) may make the speaker feel better but doesn’t do much for the object of the description.
ddon
Member
5 years ago
@Sister I hate that word ‘fight’ too, and ‘battle’. This is not a battle or a fight. That implies there’s something that we have control over and something we can physically do to overcome. It infuriates me every time I hear it. I do what my doctor says, I endure the treatment and the meds, I eat well and exercise and I try to live. That’s it. What else can I do? How can I fight? 😤🤬
Sister
Member
5 years ago
It's so important to be heard @averi. I sometimes feel that there's some sort of veil that gets draped over the reality of breast cancer (and quite possibly, other cancers, too). What can start out meaning to be reassuring can often have the opposite effect as in your case. Another term I loathe when talking about cancer is "fight" - what happens if treatments don't work - did the person not fight hard enough?.. are they some sort of failure? That's what I liked about Charlotte Tottman's manner - she comes across as straight up. Understanding and empathetic but no sugar coating. Fluffy words are something I no longer have time for.
averi
Member
5 years ago
Thank you @Rabbit2020 for your story and what a journey you have been on. I am so glad to hear there are other women who feel the same way. I don’t feel so much alone now.
@NewBoobsPLS will you please thank your dear friend @Elle_V92 for me? It was her question which had been heard by many that prompted me to finally join this network which I was encouraged to do but hesitated. Now that I have I think it’s one of the best things I did for my breast cancer journey.
Thank you everybody including @Jwrenn and @Sister. I feel you all have given me the validation that I needed so much. Besides this war of words part, I do understand it is not their intent to make me feel what I had been through any less significant and I do feel very lucky to have found my medical team (another story there) as they have been wonderful in every other aspect and I am confident in my oncoplastic surgeon with my reconstruction which is now back on track. Hopefully I’ll be on my way to heal soon, physically and mentally.
Sister
Member
5 years ago
I am rather bewildered hearing that women are being told that carcinoma-in-situ is pre-cancer. It's very name says it's cancer that hasn't gone travelling yet. Early pre-invasive cancer is really what it is. I understand that it's probably become a way of delivering news so that it doesn't scare the patient too much but it's bloody patronising and clearly incorrect, particularly if it gives a false sense of security. As @Afraser said, hopefully you come to feel how lucky you have been to get an early warning but to diminish the reality of cancer is to send you back out into life without the understanding of what has happened to your body. Not that I wish this understanding on anybody but if it's happened, you've got to be aware.
Rabbit2020
Member
5 years ago
Hi @averi and others, thank you for sharing your stories. I was also in the webinar and had the exact same reaction. I also share the experience of @Poodle_Lady55 where my husband was more than happy to be led by the BreastScreen doctor who looked me in the eye and said "You don't have breast cancer. You have pre-cancer". Even though the pathology report she gave me said 'high grade...probable microinvasion'. And the next line says "Definitive Treatment for Cancer:" This was the head consultant for St Vincent BreastScreen - I expected to 100% believe her because of her position. I was so confused about how to explain it to family and friends. Did I have cancer? I felt I did, but when a head consultant at a specialist service for breast cancer tells you you don't, well, it's reasonable to doubt yourself. I was so glad it was discussed in the webinar. A lady at my work had been through DCIS, and as she is a professor of nursing I discussed it with her and was validated in my thoughts that yes, DCIS is cancer.
In a matter of under 2 weeks I went from 'you don't have breast cancer', to a lumpectomy with (thankfully) clear margins and no sentinel node involvement, but the diagnosis was invasive and HER2+. So my 'pre-cancer' then required not only a lumpectomy and sentinel node biopsy, but 12 weeks of chemo, 12 months of herceptin injections and 3 weeks of dose-dense radiation, thanks to COVID. A massive shift in my thinking to come to terms with it all, and trying to get my husband to understand it in a way that was supportive to me.
I have since written to the BreastScreen consultant to explain how her approach to delivering my diagnosis impacted my journey in a very negative way.
Regardless of whether you lose a breast, have a lumpectomy, whatever it is, you have cancer and that's that. I really hope BCNA are able to fulfil the promise made during the webinar, that they are working on 'educating' medical professionals in how to communicate diagnoses to patients.
All the best to you ladies in your journeys xxx
Jwrenn
Member
5 years ago
Hi @averi my cousin had DCIS and a lumpectomy then one year later had LDIS and then had a double mastectomy so I would never have said she didn’t have a cancer. Your surgeon is doing what is the best thing for your health.
NewBoobsPLS
Member
5 years ago
Hi Ladies, i believe the lady you were reffering to from the webcast was my dear friend @Elle_V92.
I think @Poodle_Lady55 said it best, DCIS: the C is for carcinoma which means type of cancerous cell!
People really have no insight into what and or how the things they say could effect others.