Decision
I have been diagnosed a second time the first was DCIS 3.5yrs ago, had a lumpectomy without radiation or chemo. Cancer has now returned in the milk duct 2mm. I am having surgery soon was given choice of total mastectomy or total nipple and aerola removal. His recommendation was mastectomy, I have chosen the later. Now wondering if I was offered radiation after the first surgery would I be in this situation now. Also not recommended for radiation after this current one. Not sure if I have made the right decision.
DCIS, mastectomy with immediate reconstruction advice please.
Hello all, This is my first blog as I have only recently been diagnosed with DCIS, high grade. I had been getting strange pains in my right breast and my doctor sent me down for an ultrasound and mammogram. From there I was sent to a general surgeon who told me that they had found a very small area of calcification in my right breast. I was then sent on to have a stereotactic biopsy. It was only a few days after this that my surgeon had wanted to see me again, this made me worried. This is when I was told that they had discovered I had DCIS, high grade. I went straight on to have a lumpectomy with sentinal node(s) removed. I was still quite positive because in my mind it was only small and hopefully they would get it all out and I may only have to worry about following up with radiotherapy afterwards. Within a week I had my results. Thankfully my sentinal node results were clear and there were no cancer cells found within my breast. Unfortunately though the area was bigger than they had thought and they removed 3.5cm. Three sides had clear margins but one side didn't. This was when the reality of it all really kicked in. We touched on my options, another lumpectomy followed by radiotherapy, mastectomy or mastectomy with immediate reconstruction. I was quite numb at this point and thought I'd just go ahead with the lumpectomy. However being small breasted I knew that after two lumpectomies and radiotherapy my breast was going to be different. After spending some time researching my options I now feel that a mastectomy with immediate reconstruction is possibly the way I want to go. For several reasons I don't want to have an implant. So I have been researching flap reconstruction, mostly DIEP. I understand this is a major operation that can have a lengthy recovery period. I have been blessed to be able to read many stories from this site and have already read over all the reconstruction links that have been posted. They have been wonderfully helpful in my decision making. What I really wanted to discuss with you all was my options. I will be going through the public system and I am really worried that I am going to be persuaded into implants particularly considering I haven't had radiotherapy (and possibly because my breasts are small). At the end of the day will I get to make the choice of what I feel is best for me or will I not have that option? I can be quite intimidated by doctors/specialists and scared I'm going to be talked into something I really don't want to do or that they wont listen. The next choice I need to make is do I do both breasts at the same time. Oh so many decisions! I would be ever so grateful for any advice on all of this. I would also love to hear from those who have had mastectomy with immediate reconstruction, followed by flap reconstruction - TRAM flap or DIEP. Also from any one who has had bilateral mastectomy with immediate flap reconstruction-how long was the operation, recovery time etc. I am a 39 year old singly mummy to two beautiful young children. I live in country Vic and would need to travel 3 hours to melbourne to be able to do any of this. Thank you for reading my 'very long' story :) I hope it all makes sense!
Being sent to surgeons who don't do skin sparing mastectomy!
I was diagnosed with early breast cancer - DCIS (at age 38) and was advised to seek a referral from my GP to see a surgeon. My initial referral led me to a general surgeon who told me that My first option was mastectomy. He stated that he would complete a traditional mastectomy whereby the nipple was removed and I would have a scar across my left chest. He never offered skin sparing surgery, nipple sparing surgery or the option of a reconstruction at the same time as mastectomy. My other option was to have the DCIS removed and be left with very little breast tissue and then radiation therapy. When I left his office I was devastated. I have two small children who depend on me and I was willing to do whatever it took to treat what I had. Two days passed and I got another referral for another surgeon as I was given 3 weeks to make up my mind. This time my GP sent me to a oncologist breast and endocrine surgeon. She stated that she would recommend a mastectomy only as most of my breast tissue would be removed as I had 3 areas of DCIS. She showed me pictures of a skin sparing mastectomy and also stated that I was a candidate for nipple sparing surgery. I was told that reconstruction was a definite possibility at time of mastectomy and arranged an appointment for me to consult the plastic surgeon who would assist if I went ahead. I was also explained the risks associated with keeping the other breast. I sit here 4 weeks later after having a double mastectomy skin and nipple sparing surgery wondering if there are many women who are not being educated about their options. I was so desperate for a resolution at the time of diagnosis that i could have easily not gone for a second opinion. Not once did a breast care nurse or diagnosing doctor mention these types of surgeries to me. I received my breast cancer information pack and none of these surgeries are in any of of it. I've since discovered that there is only approximately 6 surgeons in Brisbane who are offering this type of mastectomy. There is little assistance on the net when trying to find these surgeons and I don't understand why. I know that this type of surgery is not advisable for all diagnosis. However, As women facing something so serious do we not deserve to make an informed decision regardless of our diagnosis?
Extensive DCIS with ITC
hi, I was diagnosed with high grade DCIS following a MRI late last year (showed as ~2.5cm), not picked up on US or mammogram. I had a lumpectomy, which didn't get clear margins at 7.5cm so based on that & the initial pathology (HR negative) I elected for a mastectomy which turned out to be the right choice as they found a further 8cm, so it was extensive. But they also found ITC in one of the sentinel nodes, which I believe is fairly rare with pure DCIS. They haven't found any evidence of invasive cancer elsewhere in the breast tissue. I'm waiting to see what (if any) further treatment the MDT is going to recommend, but it seems like it can go 2 ways (treatment or monitor only) and the guidelines for this vary by country. Wondering if anyone else has had this diagnosis and what treatment option they went with?
Side Effects of Radiotherapy - What to expect
So, I've had 19 treatments with 6 more to go for breast cancer. I had a lumpectomy so my breast is still mostly intact. So far apart from being tired my skin has held up well with regular application of Sorbolene and a couple of days of of Elocon for itchiness. In your experience out there in breast cancer land is this as bad as it gets. I am not having the 5 focused boost treatments as the radiologist doesn't believe it is necessary because of my pathology results so I'm just have the wide area radiation.
Seeking Qld DCIS-diagnosed women to interview
Hello everyone, I am a journalist with Qweekend magazine, the Saturday colour magazine of The Courier-Mail, Brisbane. I'm putting together a responsibly researched article about the efficacy of mammography, and in particular whether women are over-diagnosed through detection of DCIS, which might otherwise remain in situ, and not cause any grief during a woman's lifetime. Obviously, once DCIS IS detected, most women opt for treatment -- either surgery or radiation or other drugs. Since there is at the moment no sophisticated diagnostic tools which will tell precisely WHICH DCIS will progress into invasive cancers, very few women opt for no treatment, and are willing to adopt a wait-and-see approach. I'd be keen to talk to anyone who wants to talk about the course of treatment they took following a DCIS diagnosis. Does anyone regret going down the surgery course? Is there anyone out there who has the nerves of steel to adopt a wait-and-see approach? (I don't have figures yet, but the vast majority of women choose surgery). I can be contacted at susan.johnson@news.com.au or on 07 3666 6607. Many thanks Best wishes, Susan Johnson