Hi everyone, just joined and so glad I did, I’m looking forward to being able to chat with everyone and get my feelings out.
Got diagnosed last Wednesday and was left in complete shock. Was diagnosed with DCSI Grade 11. Due to have a magnetic resonance next week then will have a meeting. I was offered at first a lumpsectomy but me being the worrier that I am I asked if a could have a mastectomy. She said that wasn’t the normal procedure but would ask the team. My reasons for wanting it is I have a 36f bust and have breast density C. In my left breast I also have a fibrodeoma that I can never feel, so my worry is if I don’t do the mastectomy how will I know that something is going on. I only found out about my microcalcifications through my yearly mammogram, still can’t believe they grew 3cm in one year!! Another reason I mentioned to the nurse was, I didn’t like the thought of radiotherapy and she replied, just because you have a mastectomy doesn’t mean you don’t have radiotherapy. Also the thought of having to do the worrying mammograms all the time is gonna freak me out , but my son says that’s a good thing at least you’re getting them checked out where as in a mastectomy he doesn’t think they are, I’m so confused, would appreciate any advice.
Statistically a lumpectomy followed by radiotherapy carrys equal outcome to a mastectomy. Would you be aiming to have reconstruction after mastectomy, or wanting to go flat? Bear in mind that mastectomy and reconstruction is nothing like having a ‘boob job’. Usually, the nipples are gone after, and even if spared, are numb and just for aesthetics. You usually don’t have a hidden scar under the bust, more often a long one across the middle of the breast.
It’s early days yet, better to wait until you have got all the information about what you are dealing with. So far it sounds like you have intermediate DCIS (not heard of grade 11, I’m guessing you mean grade2).
All DCIS is grade 0 in cancer terms and hasn’t developed ability to spread yet, so that’s a positive.
If the DCIS is contained within the breast then it can mean mastectomy avoids radiotherapy, but, if the DCIS happens to be growing up to the chest wall or up to skin resulting in poor margins of clear cells even with a mastectomy, then radiotherapy is also used, so it depends where your DCIS is situated.
There is a lot to consider, not enough is known yet to make a decision, all you can do is ‘hang fire’ in the meantime, which is why waiting for results is one of the hardest times.
Hi
Sorry you’ve had to join this group but welcome.
I can’t really help about mastectomy as I went for lumpectomy. I had two areas of concern one came back as a fibrodema and the other a hormone positive IDC but it had also spread to two nodes so had a second operation to remove them all which were clear.
I went onto have an onco test of 11 and 5 days radiotherapy, which wasn’t bad.
The ladies I was in with had mastectomies and I do believe they don’t have mammograms on the side that was removed, but I’m sure someone will correct me if I’m wrong.
Good luck on your journey and you will get loads of incredible responses on here I’m sure.
Take care
Xx
Only you and your doctors can make the decision about what surgery you have, but I would try not to get too fixed on one or the other at this time. You have only recently been diagnosed and it’s a lot to get your head around and until all the results are back you don’t know fully what you are dealing with.
With what you know at the moment, a 3cm DCIS in a F cup breast would seem proportionately small so removal of your entire breast may be considered excessive (I’m no doctor though). I had a lumpectomy of a 1.7cm tumour, couple of others tiny tumours and some DCIS in a C cup and, to be honest, it’s hardly noticeable.
Same as you, I have some other areas/lumps and bumps which are benign as well as dense breasts. I’ve just this week been recalled from my first mammogram because one of those showed up again. It’s been frightening, and my mind was in overdrive, but I personally would trade that temporary anxiety for removing my now healthy breasts any day of the week.
It’s a lot to think about but you’ll be able to make more informed decisions when you know more. x
Thank you for all your replies.
I have actually read that lumpsectomy followed by radiotherapy carries equal outcome to a mastectomy, but it’s the recurring that is bothering me especially with dense breasts. The thought of having to wait 6 months for more tests will make my anxiety a thousand times more than what it is now. In the 3 wks of having my diagnosis I have lost 4 kilos!!! As I said before I’m a complete worrier and know the anxiety will take over my life. But then I have heard you can still get recurrences after madtectomy
If it turns out from your mri that the dcis is over a wide area, mastectomy could become a sensible option anyway, so it might not be a choice you need to make, it could end up the best option.
We are all different, I’m not a worrier, but would only have a mastectomy as a last resort, and even then would probably feel like my life was ruined, even though plenty of people get over it, I would find it hard to deal with, but thats just my thing.
Hi,
I was diagnosed with 10cm of moderate DCIS, in Oct. I am a D cup and also have dense breasts. As the DCIS was so extensive I had to have a single mastectomy and nipple removal. Luckily, it had not spread to the lymph nodes, so I was able to have surgery, removal of one lymph node and no radiotherapy. I had reconstruction at the same time because I needed no further treatment.
I too had fibrodeoma in the other breast but very small spots. There was no discussion about removing both breasts.
I am 6 months post op now, and the surgeon did a great job. There is a small difference in the size of my breasts, but Ive been told there are further cosmetic treatments that can be done in time. I plan to see how my breast settles in time and decide then.
I have ongoing numbness and tenderness down the side of my breast where the lymph node was taken and have no sensation at all on the skin, which I’m told is normal.
If you have any questions feel free to ask 
. I hope that you get the support that your need to help you make the right decion for you xx
Hi @shesthebeat
You mentioned in your post that you have on going numbness and tenderness down the side of your breast where the lymph node was taken and have no sensation at all on the skin, did they tell you it will improve?
They have taken all of the tissue out of the breast, so it’s impacted all of the nerve endings. I dont think it’s likely any sensation will come back. Im relieved in a way that I still have one normal breast that hasn’t been impacted, and I didnt realise I would feel this way xx
Sorry to hear this, I was all for having a mastectomy now I’m having second thoughts, but obviously I won’t know my options until I’ve had my MRI.
Anyone else having problems with numbness and no sensation?
Also would like to ask if anyone has had acupuncture for anxiety. Since my diagnosis 6 days ago I am a nervous wreck, my brain won’t click off even for 30 seconds, lucky if I sleep 3 hrs a night, I just can’t carry on like this
I’ve had accupuncture for emotional stress during my divorce which was helpful.
There is a great herbal product called Ashwaganda I took at the same time too to take the edge of anxiety/distress. But check with your doctor if its safe to take.
Do have a look at the Sleepio app which includes several tools to quiet the mind if too tense for body to relax into sleep. Onboarding Sleep Test - Sleepio will give you free access. I also find yoga nidra for sleep to be helpful. If you down load the app called Insight Timer you will find many free yoga nidra meditations for sleep on there. Try the ones by Jennifer Piercy. Wishing you well. Xxx
Dear @2209 , I feel for you with so much going round in your head right now. Its overwhelming I know. As you havent had a reply from someone who chose mastectomy I can offer you my own experience… I chose mastectomy over lumpectomy. As a result I was not offered radiotherapy. I am in my second year post diagnosis so have had two follow ups. Each time I have had mammogram on the remaining breast and ultrasound on both sides. I insisted on the ultrasounds because my remaining breast is dense and because I wanted my mastectomy side to be checked. There is some loss of sensation which I was anticipating but only a little. I’m sure I read somewhere that nerves do grow back from the spinal cord but its a very slow process. Every case and every body is different but I hope my post is helpful. Love Tulip x
I had 2 lumpectomys and then had a masectomy as the cancer was quite deep and wasnt picked up in mammogram. I had chemo and radiotherapy. I continued to have mammograms every year.
I forgot about the nerves growing back! I am 6 months post op, so maybe there is some hope 