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

Star
Member
12 years ago
Yes, it is a strange predicament. I do feel let down that the education pre and post op seems to be so poor. Ash-lee were you not offered a skin sparing mastectomy? Poor form if you weren't. Everyone should be offered skin sparing, unless there are skin issues from radiation etc. I would have liked more info on nipple sparing in hind sight. Some times I feel doctors think women are dummies and wouldn't understand the info, so they keep it simple and basic. I am annoyed at the lack of info, and lack of encouragement to take more time to seek all the info I needed to feel truly comfortable. It all happens so so quickly.
Ash_lee
Member
12 years ago
Hi! I was also diagnosed with high grade DCIS after a mammogram picked it up mid august, two days later a VAB, Dr rang that night to see my GP for a referral to a surgeon who got me in the following day to see my surgeon who suggested a wire assisted lumpectomy. My surgeon said all went well although the wire was not in the right position for surgery so my surgeon cut more than expected which resulted in a finding of LCIS. So in hindsight I was thankful for the mistake that was made as LCIS can only be picked up my an MRI. I was told in my follow up appointment I had the weekend to think about either more surgery followed by radiation and chemo, always to be monitored, or a mastectomy. The DCIS and LCIS were 7mm away from joining up, and told within 3-6mths I would be looking at invasive. I went ahead with the mastectomy 3 days later 27/8 and have recovered really well but I totally agree that the support wasn't what I was expecting as I feel not enough information is out there on DCIS and even harder on LCIS. I feel as though I didn't have enough time to investigate my options as I've been told that it was contained DCIS and had time to look into options like skin saving surgery, keeping the nipple and recon at the same time, so now looking back my emotions are up and down, now waiting on MRI results for my left breast, at least I am more knowledgable now and am blessed it was caught early but it seems a catch 22 situation in that it's not invasive cancer yet we end up with the same treatment as though we have invasive. x
Ash_lee
Member
12 years ago
Hi! I was also diagnosed with high grade DCIS after a mammogram picked it up mid august, two days later a VAB, Dr rang that night to see my GP for a referral to a surgeon who got me in the following day to see my surgeon who suggested a wire assisted lumpectomy. My surgeon said all went well although the wire was not in the right position for surgery so my surgeon cut more than expected which resulted in a finding of LCIS. So in hindsight I was thankful for the mistake that was made as LCIS can only be picked up my an MRI. I was told in my follow up appointment I had the weekend to think about either more surgery followed by radiation and chemo, always to be monitored, or a mastectomy. The DCIS and LCIS were 7mm away from joining up, and told within 3-6mths I would be looking at invasive. I went ahead with the mastectomy 3 days later 27/8 and have recovered really well but I totally agree that the support wasn't what I was expecting as I feel not enough information is out there on DCIS and even harder on LCIS. I feel as though I didn't have enough time to investigate my options as I've been told that it was contained DCIS and had time to look into options like skin saving surgery, keeping the nipple and recon at the same time, so now looking back my emotions are up and down, now waiting on MRI results for my left breast, at least I am more knowledgable now and am blessed it was caught early but it seems a catch 22 situation in that it's not invasive cancer yet we end up with the same treatment as though we have invasive. x
Hbizza
Member
12 years ago
Hi star - this is exactly how I felt with regards to my high grade DCIS and to this day ( after having a bilateral mastectomy and reconstruction that didn't go well do 6 ops down and implants removed all in the last 3 mths) I still don't know if I say to people I had breast cancer. This is why I started the thread DCIS and like you, I feel like a surgical patient and have little support from said breast care services. I've also called out to BCNA that a. More info on DCIS is needed and 2. Broader support for different emotional dealings associated with breast cancer matters would be great. I think we should call this out - change only happens through communication! In the interim, I'm gearing up for part 2 of reconstruction but doing better than i thought without implants. My plastic surgeon was very transparent as to how I would feel with implants, but again I agree there is litte readily available information for different stages of this emotional roller coaster. Finally - for those of us out there who have struggled with DCIS, are we and is it appropriate to say we had breast cancer??? What do u say? I know I didn't elect to have a mastectomy by choice....
Hbizza
Member
12 years ago
Hi star - this is exactly how I felt with regards to my high grade DCIS and to this day ( after having a bilateral mastectomy and reconstruction that didn't go well do 6 ops down and implants removed all in the last 3 mths) I still don't know if I say to people I had breast cancer. This is why I started the thread DCIS and like you, I feel like a surgical patient and have little support from said breast care services. I've also called out to BCNA that a. More info on DCIS is needed and 2. Broader support for different emotional dealings associated with breast cancer matters would be great. I think we should call this out - change only happens through communication! In the interim, I'm gearing up for part 2 of reconstruction but doing better than i thought without implants. My plastic surgeon was very transparent as to how I would feel with implants, but again I agree there is litte readily available information for different stages of this emotional roller coaster. Finally - for those of us out there who have struggled with DCIS, are we and is it appropriate to say we had breast cancer??? What do u say? I know I didn't elect to have a mastectomy by choice....
Star
Member
12 years ago
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.
Christiania
Member
13 years ago
Again thank you for your comments. It's really good to hear that you are happy with the decisions you made regarding treatment. I hope I can look back and also feel that i made the right desicion and can also help others who are feeling so shocked and confused regarding diagnosis and treatment.

Chris
Christiania
Member
13 years ago
Thanks Wendy, you're email is really helpful. I know it's a tough road ahead and I'm really not looking forward to facing it all but I know I have to for me and my kids.

i hope all goes really well for you with 2014 stay and really appreciate you sharing yosot experience with me.

chris
Christiania
Member
13 years ago
Thanks for your email. Hearing your story does help me. You are really positive and an inspiration.

i guess most of its it's about getting my head around it. The mastectomy (or bilateral) still feels so extreme.

Thanks for your tips re Cancer Council counselling. I think I'll take up that option.

thanks again

chris
Hbizza
Member
13 years ago
hi all - thank you for ur note. It has been a journey. I have had the bilateral mastectomy and immediate reconstruction. Though I picked up an infection and recently had my newly reconstructed breasts (aka implants) removed about a week ago, I'm coping fine. I was sad to lose the implants as they made the confrontation of a bilateral mastectomy easier to deal with. So Christiana, if immediate reconstruction is an option, consider it. However, I'm just happy to be on the mend and know that I have done all I can to beat cancer and be with my children. My battle is now further reconstruction in January via a TRAM (tummy fat) and/or TDAP(back tissue) and fat grafting etc. I won't lie and say that you are in/ot hospital as you will need time to heal. and i now know that family support is critical particularly if you have young children as I do. So call out and request the help you need for day to day, talk to your employer and see how they can help you, but know that your health is of the upmost. Everyday I'm grateful for the help I have received from family and my patient surgeon/s so also ask questions you need to get comfortable. Good luck.

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DCIS

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