Yes that’s exactly what I was told by the Oncologist when I went to get my
results at the hospital on Friday.
Following a mastectomy and reconstruction I had to get the historical results
which where all good. No cancer showing behind breast or in the lymph nodes
which was good news to my ears.
This was after she had got my age wrong, asked which breast I had done, I
then realised she obviously had not read my records before she called me in.
I was told waiting for one more cell result to decide if I need Tamoxifen or not
when she came out with “of course you didn’t have cancer as such” then what
I have been living with since March when screened and April when told by
a very uncaring Doctor, biopsy results back and its cancer. I was also told
I was lucky to have taken the route of mastectomy as there was no chance
of anything spreading. I was not given a choice in this matter as I was told
a wle was not a feasible option as it would leave me too badly disfigured this
was not my choice but their recommendation. Please don’t get me wrong
I am very happy with the outcome and do not for one minute think I made
the wrong decision.
If I were not such a strong individual I felt I could have come out of that meeting
thinking what have all the last few months been for.
Please Doctors think on before you come out with these remarks as we all
act differently and the outcome could have been very different.
Still coming to terms with the recon to settle down but getting more energy
every day and hoping to return to work in a few weeks.
Sorry for the long post but just had to get this off my chest
Love and Best wishes to all
Keep the positive vibes going
Carol xx
Hi Carol
Know exactly what you mean you go through all these major ops and then you feel they are just saying ‘oh well it wasn’t a proper illness nothing to worry about!’ But you could have pointed out that as it is ‘ductal carcinoma in situ’ the carcinoma part gives it away.
Hope you continue to get stronger and are back to work soon.
Love
Beverley
Hi Carol
I too had DCIS in aug 2005 and had tohave a mastectomy.
My treatment went form one nipple duct removal, all ducts removed, nipple removed then breast removed and my head was all over the place. I lost my best friend to breast cancer at the age of 45 in2001, so this was a real slap in the face to me. When my friend died I tookout critical illness cover with my bank, as thought if I ever had to have a mastectomy I might want to take it easier work wise and so pay off some of my mortgage. You’ve guessed, the bank and the banking ombudsmen did not class DCIS as ‘invasive’ cancer. May not be classified to them as such, but has definitely invaded my life.
Hi Carol
I know all breast cancer is hard to some to terms with. However, I’ve had difficulty getting my head around why I have to have a mastectomy for DCIS, which I had never even heard on before I was diagnosed on 28 June. Mine is high grade and covers a large area so I have been told mastectomy is my only option. Yet like susieangel I’ve also discovered that because it’s non-invasive - I’ve been repeatedly told that I’m ‘lucky’ - my critical illness cover is useless. I’m 42 and am determined to get on with my life, but this seems like such a huge blow at the moment.
Love to you all.
Deborah
Hi Deborah,
My diagnosis was high grade DCIS, too. I also had problems in coming to terms with the first surgeon’s recommendation of mastectomy when, during the same appointment, he corrected me when I referred to DCIS as cancer. He said “let me make it clear, you do not have cancer”. It troubled me so much that I delayed the operation date three times, while I found out more information.
After a while a different surgeon was recommended to me by two separate people. I had my operation performed by this second surgeon. He did a partial mastectomy, WLE, but warned me that I might have to have mastectomy at a later stage. However, he managed clear margins, and I am now going through radiotherapy.
I do no know if you are in a position to ask for a second opinion at a different hospital? I believe that everyone is entitled to a second opinion. If you do, try to find a Breast Surgeon rather than a General Surgeon. It may well be that the second surgeon will also recommend a mastectomy, depending on the information that he has. However, then it would be easier to come to terms with, although it will still be a huge shock. To bonus about mastectomy would be that you probably would not need radiotherapy. Please ask.
Good luck.
Love,
Elena
Hello ladies
I was dignosed with DCIS intermediate grade,cribiform type,in a small area of one breast.
I had a WLE only and as they got clear margins I am told I will not need Radiotherapy.
I am not suitable for Tamoxifen due to a clotting problem and Arimidex is out due to my athritis in the spine. In my case the risks outweigh the benefits.
It is just a matter of regular checkups of both breasts and hope for the best,they will do a mammogram after a year.
Thanks Elena
Have actually had a second opinion at another hospital as I was diagnosed a few days before I moved 300 miles away from Leics to Cornwall. Mastectomy was recommended again. Have opted for DIEP as was told I wasn’t a good candidate for the other flap procedures (don’t have enough fat on my back) and don’t want an implant. Plus, my weight fluctuates and I think DIEP will give better long term result. Have also opted for reduction on unaffected breast as I’m 34 HH. Unfortunately DIEP can’t be done in Cornwall so will have to be done in Devon. Am meeting the consultant tomorrow.
Deborah x
Hi everyone
Couldn’t agree more. No , you’re lucky, it’s not actually cancer. Well, excuse me but it’s serious enough to need a mastectomy. How lucky is that!! Yes, it could have been an awful lot worse and I’m sure we all realise that but please, doctors, don’t tell us we’re lucky - have respect for the fact that its still really difficult to accept and come to terms with.
Love to all.
God bless.
Christay.
Hi there to you all who have posted on this thread. I would urge anyone who is diagnosed with DCIS and recommended that a mastectomy needs to be done to take it seriously. I was diagnosed in December 2006. What a journey! I was told I needed to have mastectomy but offered reconstruction to be done at the same time and chose to use the LD recon using muscle from my back. I changed hospital’s after the diagnosis to go to one that had a “proper” qualified plastic surgeon. This delayed the surgery a little. I saw the consultant at the new hospital, who informed me that I had all three grades of DCIS (news to ME!) low intermediate and high grade. He told me when I went to theatre he could not guarantee that I would wake up with the recon done. That was scarry for me!!! The breast surgeon was going to perform the mastectomy and take lympth glands and breast tissue for diagnosis while I was on the table. Depending on the results that came back they would either stitch me up or continue.
Good news the surgery went well and seven hours later I was out of theatre rebuilt and feeling pretty positive.
I too had critical illness cover and was amazed to find out that DCIS was treated with such a flippant attitude about not being REAL CANCER !!! excuse me, well you be mutilated then for “Nothing”.
When the recon was done, I thought everything was fine and that I was well on the way to getting back to my life. No such luck. Unfortunately for me, when the rest of the breast tissue went for pathology it had turned to be invasive, only by a small amount 3mm but grade three aggresive and HER 2 positive. So quite an angry Rottweiler! The news floored me. I have just finished Chemo and start herceptin next week. My oncolgist told me I’d been very lucky to have found the cancer. (I originally went to the Doc’s with a swelling in my right boob and knew that was not normal for me so got it checked out. By the time I went for results the swelling had gone but DCIS had been found. If I hadn’t acted on that swelling the story would have been very different, because of the aggressive nature and also HER 2.
On a plus note (if there can be one) because it turned out to be invasive my policy paid out.
I am doing ok and remain positive and focussed. I’m 42 and got a beautiful daughter who I treasure and nothing is going to rob me of our life together.
Stay positive,
Hope that settles peoples minds.
Loads of love to all xxxxxxxxxxxx