DCIS - If it is not cancer than why I am so worried?

Wow I cant imagine how much your heads spinning so will try not to add further to it. I have had the dorso muscle  (with implant) recon which failed, then tram flap which hadnt healed completely when i started chemo so it is damaged and now i have 1/2 a breast. the radiation didnt seem to do any damage to the breast and i had no burning. I do have back probs from dorso with a bit of spine curvature.  i now suggest to anyone thats asks to have mastecomy, chemo, radiation then look at recon. I was 400kms from home too so just wanted to get it over with so i could get on with life, so I understand you situation. Having said all that I was recently at the 2nd conference for younger woman and spoke to a lady that had tramflap with a implant underneath it so has a full size breast. (something I wasnt offered) I was thinking if you check out the seminars from that conference (which is on this site) you may find more options that could suit you. I'm going to look into having the implant put in under my musle so i dont have to use a prothesis. Maybe the implant could be removed and then replaced if you ever had to have radiation as it sounded like a simple proceedure putting it in but maybe worth asking the question.  Also having the muscle over the implant may protect it a little??    Is your sister available to help you with these decisions? if not a problem shared is a problem halved, this site is great for sharing and I'm sure you will get others ideas too. Hope this helps and good luck, Kaz

Wow I cant imagine how much your heads spinning so will try not to add further to it. I have had the dorso muscle  (with implant) recon which failed, then tram flap which hadnt healed completely when i started chemo so it is damaged and now i have 1/2 a breast. the radiation didnt seem to do any damage to the breast and i had no burning. I do have back probs from dorso with a bit of spine curvature.  i now suggest to anyone thats asks to have mastecomy, chemo, radiation then look at recon. I was 400kms from home too so just wanted to get it over with so i could get on with life, so I understand you situation. Having said all that I was recently at the 2nd conference for younger woman and spoke to a lady that had tramflap with a implant underneath it so has a full size breast. (something I wasnt offered) I was thinking if you check out the seminars from that conference (which is on this site) you may find more options that could suit you. I'm going to look into having the implant put in under my musle so i dont have to use a prothesis. Maybe the implant could be removed and then replaced if you ever had to have radiation as it sounded like a simple proceedure putting it in but maybe worth asking the question.  Also having the muscle over the implant may protect it a little??    Is your sister available to help you with these decisions? if not a problem shared is a problem halved, this site is great for sharing and I'm sure you will get others ideas too. Hope this helps and good luck, Kaz

Wow I cant imagine how much your heads spinning so will try not to add further to it. I have had the dorso muscle  (with implant) recon which failed, then tram flap which hadnt healed completely when i started chemo so it is damaged and now i have 1/2 a breast. the radiation didnt seem to do any damage to the breast and i had no burning. I do have back probs from dorso with a bit of spine curvature.  i now suggest to anyone thats asks to have mastecomy, chemo, radiation then look at recon. I was 400kms from home too so just wanted to get it over with so i could get on with life, so I understand you situation. Having said all that I was recently at the 2nd conference for younger woman and spoke to a lady that had tramflap with a implant underneath it so has a full size breast. (something I wasnt offered) I was thinking if you check out the seminars from that conference (which is on this site) you may find more options that could suit you. I'm going to look into having the implant put in under my musle so i dont have to use a prothesis. Maybe the implant could be removed and then replaced if you ever had to have radiation as it sounded like a simple proceedure putting it in but maybe worth asking the question.  Also having the muscle over the implant may protect it a little??    Is your sister available to help you with these decisions? if not a problem shared is a problem halved, this site is great for sharing and I'm sure you will get others ideas too. Hope this helps and good luck, Kaz

Hi Kaz,

My sister (who is a physio) is strongly against taking tissue from the back as she has come across lots of problems.  She had a lumpectomy, radio, chemo and is now 4 years clear. With no other "lumpy" bits." This is where it is confusing as she had "breast cancer" but I have DCIS and most websites don't classify this as cancer, so I am not sure why I am so concerned.  This also impacts on how to talk to people.  Not quite sure which category DCIS fits into - preventative or cancer?   Interestingly, my sister was "triple negative", where as my pathology showed 100% positive to oestrogen and 50% to progesterone. 

I am sorry to hear that you have had so many problems. I have the understanding that if you have a mastectomy radiation is not required. Meantime I am still waiting and hope that the recent stress doesn't effect my cycle.

It is good to communicate with others - thank you for taking the time to respond.

Kind regards,
Rachel.

Hi Rachel

I was diagnosed with DCIS in 2003 and had a mastectomy.  It showed up on the mammogram as a 6cm area but when I had the mastectomy it was acutally 9cm (pretty huge considering I had had a mammogram the year before and it hadn't shown up at all!!). I was told at the time that DCIS is pre-cancer because it is fully contained in the milk ducts.  However in August 2010 I was once again diagnosed with BC - this time I had invasive ductal cancer (2.2cm) and it was recommended that, due to my history,  I have another mastectomy.  When I had the mastectomy this time they also found DCIS in the breast!  You can apparently have it there without it showing up on the mammogram as some DCIS does not show as calcifications.  I was pretty shocked.

I was told by my surgeon that I was unlucky (you're not kidding Genius!!) to have had breast cancer twice.  Therefore I call DCIS a form of breast cancer.  After all, if it is left to its own devices it will most likely escape from the milk ducts and become invasive ductal cancer.

I am 42 now (first diagnosed at 35 and then again this year) and the first time I had a tram flap reconstruction (which took a lot of recovering from).  This time I have had a lat dorsi reconstruction.  I haven't noticed any problems with my back as yet (and in fact hadn't heard of anyone having problems before this post!).  I am only 6 weeks post op though and don't start my chemo until 27th October.  It hasn't been particularly painful - I was only taking panadols in the hospital after the PCA was disconnected.  I would more say it was a bit uncomfortable.  I have already got pretty good arm movement again so I would certainly recommend it based on what I have been through (I know you have back problems though so I guess your doctor would be able to advise you best).  I don't have to have any radiation therapy because of the mastectomy.

I hope this helps and good luck!

Louise x

Hi Rachel

I was diagnosed with DCIS in 2003 and had a mastectomy.  It showed up on the mammogram as a 6cm area but when I had the mastectomy it was acutally 9cm (pretty huge considering I had had a mammogram the year before and it hadn't shown up at all!!). I was told at the time that DCIS is pre-cancer because it is fully contained in the milk ducts.  However in August 2010 I was once again diagnosed with BC - this time I had invasive ductal cancer (2.2cm) and it was recommended that, due to my history,  I have another mastectomy.  When I had the mastectomy this time they also found DCIS in the breast!  You can apparently have it there without it showing up on the mammogram as some DCIS does not show as calcifications.  I was pretty shocked.

I was told by my surgeon that I was unlucky (you're not kidding Genius!!) to have had breast cancer twice.  Therefore I call DCIS a form of breast cancer.  After all, if it is left to its own devices it will most likely escape from the milk ducts and become invasive ductal cancer.

I am 42 now (first diagnosed at 35 and then again this year) and the first time I had a tram flap reconstruction (which took a lot of recovering from).  This time I have had a lat dorsi reconstruction.  I haven't noticed any problems with my back as yet (and in fact hadn't heard of anyone having problems before this post!).  I am only 6 weeks post op though and don't start my chemo until 27th October.  It hasn't been particularly painful - I was only taking panadols in the hospital after the PCA was disconnected.  I would more say it was a bit uncomfortable.  I have already got pretty good arm movement again so I would certainly recommend it based on what I have been through (I know you have back problems though so I guess your doctor would be able to advise you best).  I don't have to have any radiation therapy because of the mastectomy.

I hope this helps and good luck!

Louise x

Dear Tanya and Louise,

Thank you for taking the time to read the post and respond. 

I am now scheduled for the Breast MRI on Wednesday followed by meeting with surgeon on Thursday.

You all sound so brave.  Considering what you have been through.. and so recently. 

I am swinging from "Go for a mastecomy" and then change my mind and think I should avoid it if I can.  How are you coping psychological after such major surgery?

Best wishes for your recovery and chemo.

Rachel.

I agree with Tanya.  I wish I had had a bilateral mastectomy the first time!  Unfortunately I ended up with BC in the other breast after having a mastectomy in one side 7 years earlier.  If I had had both done at the same time I would have saved myself from having to have chemo this time around :(  However, it wasn't right for me at the time and I think that is what you need to keep in mind.  Make sure that whatever decision you make is the right one for you.  Your surgeons will tell you what they think is the right way to go. 

I'm certainly not saying "Get a Mastectomy" but just remember that you don't stop being a woman if you do decide to have a mastectomy.  My husband still loves me even though, now, I don't have any of my original breasts!  I will be the perkiest one of all my friends as we grow older!!

I truly don't know what decision I would have made if I had had the choice to have a lumpectomy at the time I was diagnosed the first time.....my children were only 5 and 8 at the time and I was only 35.  It would have been a huge decision to make and luckily for me one that I didn't need to make.  This time I did have the choice but didn't hesitate in opting for the mastectomy as for me it was important that I was sure that it wasn't going to come back again (I didn't want to go through it a third time!).

I hope you can find peace with your mind and make a decision that you are comfortable with :)

I have a breast MRI on Wednesday and meet with surgeon on Thursday to go through results and plan for next surgery. 

Medicare will give a larger rebate if three or more relatives have had breast/ovarian cancer.  I have been chasing details up with relatives overseas and have found that I can now maximize the benefit. I wondered how I would validate my claim as my relatives were not in Australia.  Apparently Medicare have never questioned or done any audits to validate verbal claims.  This will save approx $400, but only at a Medicare approved facility such as at Greenslopes Hospital in Brisbane.

The breast MRI show upto 95% of high grade DCIS that might not be detected on mammogram or ultrasound.  I wonder why this is not more readily available?  I will have both breasts checked to determine the extent of the DCIS and to determine if it is already present in the other side.

Perhaps there will be a special offer "two for the price of one?"

Any recommendations on cup size??

Good to see that you've still got your sense of humour Rachel!!  Best of luck with everything,

Louise :)