Forum Discussion
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!
11 Replies
Hi, sorry I never got back to you. The week before the operation was such a whirl wind of appointments and last minute things to organise I never got back online before I went in.
I'm still in hospital and hopefully being discharged tomorrow so will have been in five days in all. Yes the first few days were hard, my operation went for 8.5 hours and I was only in ICU for 1.5 hours. But it's still been a tough few days. I'm finally starting to feel a little bit normal again today and less foggy in the head. I've been taking some slow walks around the ward (bent over) and sitting out of bed,going to the toilet and showering without assistance. But I get so tired so quickly.
So glad I'll be home for christmas but still a little anxious of anything going wrong when I get home. Just take it a day at a time. Thank you very much for checking in on me xx
Hi checking in to see how surgery went, I assume you are still in hospital.
Hope all went well, hope they are looking after you the first few days are the hardest, take carexx
Hi checking in to see how surgery went, I assume you are still in hospital.
Hope all went well, hope they are looking after you the first few days are the hardest, take carexx
Iam in Melbourne and if you let me know what hospital yu are going to I will try and visit. It can be lonely in hospitalx
Hi all,
I have high grade DCIS in my right breast. I had a lumpectomy and they took out 3.5cm but margins weren't clear. Sentinal node test was clear. For several reasons I have decided to have both removed.
I have been on a waiting list for a right completion skin sparing mastectomy and left prophylactic skin and nipple sparing mastectomy with immediate diep flap reconstruction. I've just found out I'm going in on the 15th of december. Although I am really pleased I can get it done so soon and before christmas I am also terrorfied!
I have been doing alot of reading from this site over the last few months and it's been so helpful. I now have a recliner ready to sleep in for when I get home if need be. I also read that some of you found it helpful to sleep on the medical sheepskin so I bought one of those to take with me. I have button nighties and 3/4 pajama bottoms if I need them. Can anyone recommend any thing else I may need or give me some extra advice.
The decision to keep my left nipple hasn't been finalised yet. I was happy to keep it originally but it was recently explained to me that if kept if would need to be lifted at least 4cm. They have lost there perk since breast feeding! I also want to minimise any extra risks that come with keeping it. I was also told it would be easier to match up newly made nipples than a newly made and old nipple. I think that the decision is mine at the end of the day but I now have a week and a half to decide and feel a little torn! Any advice would be greatly appreciated.
I'm in country Vic and have to travel close to 4 hours to get to my hospital in Melbourne. My parents will be looking after my children but unfortunately it's just to hard for them all to come down and visit. I will miss them all so much. I will be relying on lots of phone calls. Might seem like a strange question but can anyone who has had this done tell me how long after the operation they were 'with it' enough to be able to make or receive calls?
I do have a sister down that way who will be able to visit me which is brilliant.
Feeling very anxious but looking forward to it all being done and hopefully being back home for christmas with my family. Your all welcome to come and hold my hand before and after the operation!
Hi all,
I have high grade DCIS in my right breast. I had a lumpectomy and they took out 3.5cm but margins weren't clear. Sentinal node test was clear. For several reasons I have decided to have both removed.
I have been on a waiting list for a right completion skin sparing mastectomy and left prophylactic skin and nipple sparing mastectomy with immediate diep flap reconstruction. I've just found out I'm going in on the 15th of december. Although I am really pleased I can get it done so soon and before christmas I am also terrorfied!
I have been doing alot of reading from this site over the last few months and it's been so helpful. I now have a recliner ready to sleep in for when I get home if need be. I also read that some of you found it helpful to sleep on the medical sheepskin so I bought one of those to take with me. I have button nighties and 3/4 pajama bottoms if I need them. Can anyone recommend any thing else I may need or give me some extra advice.
The decision to keep my left nipple hasn't been finalised yet. I was happy to keep it originally but it was recently explained to me that if kept if would need to be lifted at least 4cm. They have lost there perk since breast feeding! I also want to minimise any extra risks that come with keeping it. I was also told it would be easier to match up newly made nipples than a newly made and old nipple. I think that the decision is mine at the end of the day but I now have a week and a half to decide and feel a little torn! Any advice would be greatly appreciated.
I'm in country Vic and have to travel close to 4 hours to get to my hospital in Melbourne. My parents will be looking after my children but unfortunately it's just to hard for them all to come down and visit. I will miss them all so much. I will be relying on lots of phone calls. Might seem like a strange question but can anyone who has had this done tell me how long after the operation they were 'with it' enough to be able to make or receive calls?
I do have a sister down that way who will be able to visit me which is brilliant.
Feeling very anxious but looking forward to it all being done and hopefully being back home for christmas with my family. Your all welcome to come and hold my hand before and after the operation!
- Hi there I had extensive DCIS in right breast and only had clear margins on 3 sides too... Also had sentinal node biopsy which was clear .. And I went public. I was advised as it was extensive and high grade that mastectomy was the best treatment. I elected to go bilateral as I have a family history of breast cancer. Whilst I did do skin sparing I did not do nipple sparing as this exercise was about risk reduction and I was glad I did as there was DCIS behind the nipple. Whilst my first preference was for tram flap I ended up with expanders for my immediate recon. I am happy with my choices so far. I think the biggest piece of advice I can give you is there are a lot of variables and every one is different - information and weighing up all alternatives and work out what is best for you.... Things like, surgery time, hospital stay, recovery time, follow up treatment all play a part in your decision and you need to feel like you are in control of the decision making. A good doctor will give you all the options, pros and cons of each and then allow you to make the choice. What ever choice you make it can be a long process and this is a great place to come for information. All the best Chris
- Hi there I had extensive DCIS in right breast and only had clear margins on 3 sides too... Also had sentinal node biopsy which was clear .. And I went public. I was advised as it was extensive and high grade that mastectomy was the best treatment. I elected to go bilateral as I have a family history of breast cancer. Whilst I did do skin sparing I did not do nipple sparing as this exercise was about risk reduction and I was glad I did as there was DCIS behind the nipple. Whilst my first preference was for tram flap I ended up with expanders for my immediate recon. I am happy with my choices so far. I think the biggest piece of advice I can give you is there are a lot of variables and every one is different - information and weighing up all alternatives and work out what is best for you.... Things like, surgery time, hospital stay, recovery time, follow up treatment all play a part in your decision and you need to feel like you are in control of the decision making. A good doctor will give you all the options, pros and cons of each and then allow you to make the choice. What ever choice you make it can be a long process and this is a great place to come for information. All the best Chris
- I also meant to say that mastectomy with immediate reconstruction is definitely the way to go. Nipple sparing and skin sparing definitely help with the emotional recovery as you still feel as though you have breasts even though you have chosen mastectomy. I hope this helps. Xx
