Still struggling with the word pre-cancer after DCIS mastectomy

averi

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. 

brightspace

Hi Averi 
Thankyou for posting 
DCIS should never be under estimated
For me DCIS  is Breast cancer as for some in rare occurances it can reappear as Metastatic cancer
We are told that it is stage O and not a true breast cancer..apparently does not have Her2+
But it is the precursor to Breast cancer IDC..

We are advised that if a mastectomy is given and nodes are not involved we  dont need hormone treatment or chemo
For me I also had comedo necrosis on the path report..I feel this was one of the factor that contrbuted to the dcis developing into MBC
Advice is to be vigilant 
Bright in hope

primek

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

Dory65

Hi @averi,
It's a big deal, whatever you call it. Glad you found it early.
Professor John Boyages books might interest you.
http://www.breastcancertakingcontrol.com.au/

iserbrown

@averi

Not sure if you have seen this information from the BCNA website but hopefully it will help you to better understand your diagnosis and as @primek said, trust in this

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/types-of-breast-cancer/

https://www.bcna.org.au/understanding-breast-cancer/what-is-breast-cancer/ductal-carcinoma-in-situ/

The link on DCIS also has the link to the book that @dory65 referred to

Take care and best wishes

Poodle_Lady55

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

kezmusc

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

Afraser

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. 

averi

Thank you @brightspace and @Poodle_Lady55 for sharing your stories, it really pulled at my heartstrings and made me teary what you are both facing. All the best to you both. 
"Bright in hope" I love that

And to @primek, @Dory65, @iserbrown, @kezmusc and @Afraser thank you so much for your thoughts and advice, it has brought me much comfort. 

Ahnn

Best wishes @averi and trust your surgeons.  DCIS is as important as any other cancer. If ignored it continues to develop,  my diagnosis was a shock to me and my GP. no indications no symptoms and after the lumpectomy on both breasts showed no clear margins and an 8mm invasive tumour, double mastectomy was completed. It's very hard to deal with the shock and impact but there's always someone online to talk to here.

averi

Thank you @Ahnn it sure is hard. Multiple surgeries in itself are exhausting. I was hesitant to join and post my story but I'm glad I did because there's really no support out there like we have in here.

NewBoobsPLS

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.

Jwrenn

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.

Rabbit2020

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

Sister

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.

averi

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.