Hi - I was diagnosed with extensive high grade DCIS in late April and was advised that I would need a mastectomy to prevent the further onset of cancer. I find that there is little information about DCIS and would like to see this changed. Many people commented on how lucky I am though i know there intention is that I'm lucky I caught it early. Since diagnosis, I have since had a mastectomy (double) and elected to have reconstructive surgery at the same time. This happened last week. I had another operation on Friday following the surgery for a blood clot and will need to have further surgery next week to repair tissue that is not healing (that may require more extensive reconstructive surgery than initially expected delaying healing time). I also find out next Tuesday if my DCIS was more extensive then first thought and what follow on treatment or preventative treatment I may need. I find the process frustrating that there appears to be less information And support available for DCIS diagnosis and nearly feel like a breast cancer intruder. I currently see my newly constructed breasts infill as giant bruised lumps. Further as a result of surgery, I can't pick up my children one of them 1 years of age compounding the emotional scarring. The process is emotional and nerve racking as results are still pending and the healing process is extensive. I'm interested In hearing from others who have had similar experience particularly with DCIS.

I was diagnosed with wide spread high grade DCIS of the R) breast at 43 requiring mastectomy. I chose the have the L) removed also. I must say I have been very disappointed in the pre and post op counselling of my mastectomy and for my recon. Not requiring any chemo or radiation, I was sent home after my mastectomy with no follow up support. I became depressed, and felt I couldn't / shouldn't contact breast cancer services for help. I felt more like a surgical patient than a cancer one. I can't understand why I was not linked into a recovery or information program for how to cope, and what to expect post mastectomy. I was so naive with reconstruction, and wished I was made aware of of what to expect with implants. I really don't like the firm, immobile, rigidness of them. I expected soft n round! Having profession education and support would have helped me cope better. Having Invasive cancer is far more frightening, but having a mastectomy is a major emotional op and recovery. I feel my experience was not validated or recognised, that I had to be grateful and move on. I did finally access cancer services with telephone support. A support group didn't work, as I sat next to a woman with stage 4 cancer who wouldn't survive (a different situation altogether). With all the money that goes into breast cancer, I am surprised hospitals or BCNA don't run ongoing information seminars on a range of topics for people to attend. When u are depressed its hard to find help for yourself, I just thought I would be automatically linked in. I felt alone in my experience, and looking fit and well , so many people assumed I was fine. Rough road.

Hi Hbizza, I was diagnosed with high grade DCIS on the 28.05.13 and had a mastectomy on the 12.06.13 after being told that it was the only option. I struggled with the thoughts of why I had to have such a radical procedure. I searched and asked so many questions but I felt as if I had already had the boarding pass for the surgery train and with lack of information I went along for the trip. It is still to be decided whether or not I caught it early enough...what was only pre-cancer is now slightly invasive with HER2+ with no lymph node involvement. So now there is more decisions to be made in regards to treat with chemo and Herceptin or not. Again there does not seem to be a lot of accessible information for treatment of a 40 y.o. I understand fully about being an intruder, because even now I am not sure how to classify myself. The scars will heal, I only slightly regret not getting reconstruction but in the short time frame I could only deal with one issue at time. My children are older, but they are still not able to comprehend everything...but lots of cuddles help. Hopefully your results will be fine...the only thing I that I can offer is to find a good specialist that will listen to all your questions and hopefully they can shed some more appropriate answers than late night goggling. Not sure if any of this helps any..

I was diagnosed in Sept 2011 when I was 31 and underwent a bilateral mastectomy and reconstruction. I felt like I was in the same boat as you when I found out. DCIS is a type of breast cancer, just an early stage of breast cancer which has not yet spread or become invasive. The options feel drastic but the alternatives of not doing anything can potentially be worse. I was only diagnosed in one breast but based on family history I opted for both to be removed. I had the option of lumpectomy and radiation but radiation would affect my reconstruction options in the future. Likewise multiple lumpectomies and radiation also decrease the options of reconstruction. The decision was extremely hard to make and it took me a while to come to terms with my decision. I am extremely happy with my decision and am now looking forward to the next chapter in my life (having my first child in 2014). The 3-6 months after surgery and reconstruction are the hardest and most emotional but take each day as it comes. You will get there and everything will start to return to normal again. You will be able to pick up your children. Just give it some time. The expanders don't look or feel normal but after you get the implants you will start to feel more "normal". Don't feel afraid to ask questions. I had a really good, helpful and supportive plastic surgeon and breast surgeon who answered my questions (even when I asked the same questions several times in different ways). I also looked at all of the Australian Cancer sites to get a better understanding. I hope this helps you.

Thank you ladies for posting your stories I sooooo really relate to your stories. I was diagnosed with dcis 2 weeks ago after 6 years of doctors umming and aaahing over calcification on my mammograms. They removed 4.5 cm from my left breast and now I have major desicions to make regarding where to go from here. A mastectomy (or bilateral) seems so drastic but I know ultimately its inevitable. I need to get my head around it. My doctor is doing another excision next week to see the extent and whether any chance to save the nipple. I'm 45, a single mother with 2 kids and work full-time. I'm still in shock. Let me know how you are now a bit of time down the track. How are you feeling. ? I worry about depression post mastectomy. I wish all the lovely ladies here all the best in health. Chris xx

Hi Chris Once I saw the path results of what was going on inside the breast I was glad to have the whole thing removed...the DCIS was off and running so to speak and there was even Pagets Disease everything seemed to be involved. I am lucky that I am only a C/D cup and the prothesis looks great when I am dressed. I figure that whatever option I took there would be discomfort and it would feel unnatural, but the alternative of leaving the breast in place may have been a lot more uncomfortable later down the track. I have a great feeling that I have won the battle with cancer...I have left no opportunity for it to ever return followed by a short burst of chemo and herceptin it has to be gone. I think about the rollercoaster I have been on and then I look at my 3 girls and I know that I have done everything to ensure that i am going to be here for them for a long time. DCIS is still a tricky diagnosis...I feel as though I cannot class myself as someone with breast cancer, even though I am wearing a beanie to cover my bald head but it is still a diagnosis that will impact many areas of your life. I have found that there is so many suport mechanisms for when you have been diagnosised. This forum is one and also the counselling services provided by Cancer Australia. I found it really helpful to talk to someone with the same diagnosis and the service does try and match you with someone of similiar age of diagnosis. I might be still dizzy from all recent events that I haven't been depressed as such....I might have developed COD in keeping myself distracted. Not sure if any of this helps...good luck next week.

DCIS | BCNA Online Network

26 Replies

Frenchbee
Member
2 years ago
Hello. I'm not sure if this thread is still active - but I'm so glad to have found it! I've just posted my full story under "newly diagnosed". But it's so comforting to find other people who feel the same way that I do. A breast cancer "imposter" but one who has to have the most radical surgery. It's such a hard ask to have this surgery with the cost/benefit NOT being that it is lifesaving. I also find the classification of DCIS to be, frankly, awful. Pre-cancer or not "real" cancer is so dismissive - I also call it Stage 0 Breast Cancer or pre-invasive cancer which I think is much more accurate.
Olivegreen
Member
3 years ago
@June1952 thanks for sharing - I’m sorry you weren’t given any other options. I’ve got high grade and it’s 64mm which is large compared to my breast size. I feel incredibly fortunate that I can have skin sparing even though I’ll lose the nipple.
June1952
Member
3 years ago
Yes, @Olivegreen - diagnosed in 2014 with high grade extensive DCIS I was given a mastectomy which did not spare nipples or skin. No other options were given. DCIS does have the 'C word' in it and whilst it may not kill you immediately if left untreated it could spread outside the ducts. Mine was so close I was fortunate it was stopped in its tracks. Yep, let the surgeons whip off our breasts for the fun of it ! All the best.
lrb_03
Member
3 years ago
@Olivegreen, it is cancer, it's just that it has not invaded outside the ducts. That's not my story, but I hear you. For some people, DCIS is far mor "scattered" through the breast, making mastectomy the only option
Olivegreen
Member
3 years ago
@Hbizza thanks for sharing your thoughts. I know what you mean about feeling like a BC intruder. You’ve got cancer cells but it’s not cancer. But you’re going to still need a mastectomy. It is surreal!! Even though it is not ‘real’ breast cancer I think we qualify as being able to say we have very early breast cancer (stage 0). Otherwise when you are explaining it to someone it is too confusing and minimises what you are going through. I have had someone say oh stage 0 it’s not even cancer. Wtf? Let’s just whip off our breasts for the fun of it shall we??!
Ash_lee
Member
12 years ago
Hi annamodeL I can't answer as I am not on tamoxifen, but I have heard it will bring on early menopause, which is not desirable if you would like a baby. I'm 42 with a 3yr old and have a right mastectomy, I've written previously in this thread, I am in the process of deciding whether to have another baby before I go ahead with a reconstruction, as I would rather have the recon done on both sides after bub and breast feeding which I have been told by a plastic recon surgeon is not a problem to breast feed with one side but def do the recon after, due to a better result. I also am currently finding out if becoming pregnant what is the likelihood of DCIS or LCIS appearing in my left breast during pregnancy or afterwards due to raging hormones as my DCIS was positive but my LCIS was negative. In the end if I do have another bub or not I m seriously considering having my left side removed with a skin sparing and nipple saving mastectomy and recon at the same time, as I currently have to be monitored very closely every 6mths-1yr with screening; MRI, mammogram and ultrasound, as LCIS does not show up in mammograms only MRI. Even though I can't answer your question on tamoxifen I would strongly recommend you contact the Kim Walters choices program at the Wesley BC they are a mountain of advice who I think will be able to help you in that area. All the best xx
Ash_lee
Member
12 years ago
Hi annamodeL I can't answer as I am not on tamoxifen, but I have heard it will bring on early menopause, which is not desirable if you would like a baby. I'm 42 with a 3yr old and have a right mastectomy, I've written previously in this thread, I am in the process of deciding whether to have another baby before I go ahead with a reconstruction, as I would rather have the recon done on both sides after bub and breast feeding which I have been told by a plastic recon surgeon is not a problem to breast feed with one side but def do the recon after, due to a better result. I also am currently finding out if becoming pregnant what is the likelihood of DCIS or LCIS appearing in my left breast during pregnancy or afterwards due to raging hormones as my DCIS was positive but my LCIS was negative. In the end if I do have another bub or not I m seriously considering having my left side removed with a skin sparing and nipple saving mastectomy and recon at the same time, as I currently have to be monitored very closely every 6mths-1yr with screening; MRI, mammogram and ultrasound, as LCIS does not show up in mammograms only MRI. Even though I can't answer your question on tamoxifen I would strongly recommend you contact the Kim Walters choices program at the Wesley BC they are a mountain of advice who I think will be able to help you in that area. All the best xx
Ash_lee
Member
12 years ago
So glad you were offered and took the MRI, and yes it shows the full story, takes the guessing game out with numerous surgeries not needed, don't understand why it's not part of the treatment and covered or part if it? I guess it will one day! No chemo for me either, very thankful for that and didn't need medication, my LCIS was negative but DCIS was positive. I really hope the tamoxifen settles down for you, can I ask if you had a double mastectomy why do you have to take tamoxifen? Even though I had my mastectomy 7 weeks ago tomorrow I'm still trying to absorb so much info which is something I didn't have time before the op, may seem strange in that why get the knowledge now after the fact but I want to know as much as I can to learn from it.
Star
Member
12 years ago
I was offered a MRI, but doc said if you choose a bilateral mast, dont waste your money (not a claimable scan, cost of $500 out of pocket). Hubby and I agreed that we wanted to know the full disease process despite going for double mastectomy. MRI showed another undetected area of DCIS not found on Mamo. This info was so very reassuring to know having a double was the right path for me. Mammograms simply are just not 100%, MRI gives different information. I shudder to think women have a Mamo with undetected cells or areas of suspicion, then wait another 2 yrs for their next scan. Thank goodness for the mistake, it certainly went in your favour. Do you still need chemo? I don't need chemo but was put on tamoxifen. (Which has really messed with my mood and emotions).
Ash_lee
Member
12 years ago
No I wasn't Star, I was left with a layer of skin padding if that's what you call it? So I'm not completely flat to my chest wall. I think you should be given names of surgeons that specialize in breast cancer, that being their main concern then that way they are on top of what new techniques are around, my surgeon said no to nipple sparing as it has only been around here in Australia for 3 years and you still have a 3% chance of it coming back but I would still have liked the option. I know that my surgeon did what he thought best especially on finding by accident LCIS, lobular carcinoma in situ, which is always the case when finding it, so he had no idea if it was anywhere else or invasive as it turned out I had no other pre cancers in my right breast and nodules were clear. MRIs should be offered as part of the process once DCIS is found as then LCIS would be picked up too, even though it is uncommon it puts you at a higher risk for developing breast cancer. In that case I still would have had a mastectomy and will probably go again on my left breast if the MRI shows any signs of LCIS as I don't want to be worrying if and when it would turn invasive at least now after the fact I know I have options.