Hi Ladies, I was diagnosed with 9mm grade 1 invasive tumour, so had WLE 3 weeks ago in left breast. Tumour did not show up on mammogram and MRI said it was 6mm. I have dense breast tissue. At my results appointment this week turns out that 23mm was removed, and 5/6 margins showed DCIS and there was another small invasive tumour. This was all ‘imaging occult’.
I will have single mastectomy in May. I asked for double mastectomy to eliminate future risk, which was refused. Reasoning given was 5 year monitoring (mammogram and MRI) will identify any disease in the right breast - but as the DCIS and second invasive tumour were not picked up with the imaging, I do not feel reassured. I would rather have double mastectomy and be flat.
Has anyone else experienced this?
Also, I’m not suitable for abdo flap, and I don’t want dorsi lat flap as I’m very active (I’m 54). Discussed implant but I’m only an A cup so implant would be bigger and sit higher.
My lymph nodes are clear so I know I should be grateful that the surgery will hopefully be the end of my cancer journey but I don’t feel listened to and I’m feeling I’ll have to ‘make do’ with uneven boobs whether I go flat in left and leave right as is, or have implant in left and leave right as is. And to my mind the imaging on my right won’t be accurate.
Sorry there’s a lot here. My mind has been whirring and I don’t know what to do. Reply anytime because like many of you, I’ll be awake at 3am! Thank you.
Sorry to hear that you are in this difficult situation. I completely understand your reservations.
Its a wee while until May so youve still got options. You have the right to ask for a second opinion. Id see if you can speak to another surgeon & see if theyre saying the same thing. Its very possible they will but they may be able to explain it differently to the pwrson youre speaking with just now. Also possible they have a different opinion.
Good luck
Thank you for your reply and words of wisdom Luskentyre1.
Dear Gereba,
As you have said you have a lot going on at the moment but have time to sort other options. I think maybe a second opinion would be a good idea. This is your body and it’s for you to make the decisions what is best for you. However to have a double Mastectomy a big toll on you both physically and mentally.
Taking one day at a time, call your Breast Cancer team, who are there to help and support you, explaining how are you feeling at the moment, hopefully they will point you in the right direction.
We are all here to help you wishing you health and happiness going forward, please keep posting and letting us know how are you getting on. Fingers crossed for a good outcome.
Biggest hugs Tili 
Thank you Tili. I have emailed my surgeon today voicing my concerns and asked if she would take my case to MDT for further review. It was easier to order my thoughts in a coherent manner in writing. So I’ll see what happens …….
Hi gerbera,
So sorry to hear what a difficult time you are going through. Your story REALLY resonated with me. I had small dense breasts also. 16 years ago I found a lump, and a 1cm tumour was diagnosed on mammogram and ultrasound. After lumpectomy it was found to be 4.3cm and I had a mastectomy with several more satellite lesions plus 3 positive nodes found. All of this was ‘occult’ tumour not seen on mammography or ultrasound. Chemotherapy, radiotherapy and 10 years of anastrazole followed.
After initial treatment, just like you, I asked for a second mastectomy as I felt the screening was unreliable. This was deemed unnecessary and I had yearly mammograms and 2-yearly MRI scans (which do detect occult tumours I believe). After 10 years follow-up I was discharged.
5 months after discharge and mammogram, I found a lump in my remaining breast. This time it showed on both mammogram and ultrasound, a 2.5cm ductal tumour. I was offered a lumpectomy (the only time I have ever yelled at a surgeon!!) and proceeded to have chemotherapy, mastectomy and herceptin therapy.
The positive things in all this are:-
- 16 and 5 years after diagnoses I am fit and well and as far as I know cancer free.
- If you just have one mastectomy and stay flat on that side, there are clever prostheses that you can use to level up.(reply to this post if you want and I will explain more).
- If you do get a double mastectomy, as I have now, and don’t go for reconstructions the prostheses are really good and very comfortable. I have gone from my natural 34AA to a 34B.
I feel for you and where you are just now. I was 57 when I started this journey and I’m 71 now. It is horrible and difficult to go through, but there are loads of us who have survived it all and moved forward and life is all the sweeter afterwards.
Good luck with it all. I will look out for your posts as you go.
Sending hugs
Eily
Hello Eily, ooooh it’s good to hear your experiences, though I am very sorry to hear of your cancer journey for 16 years. It’s weirdly comforting to know someone else feels like me and had the same thoughts, and that I’m not going mad.
Yes please explain about the clever prostheses.
Anastrozole is another topic for a different part of my journey, but how did you find it?
And thank you for being there and taking the time to reply so thoroughly, with so much encouragement.
I feel a little better - might even manage some sleep tonight now.
Take care x x
Hello again.
I hope you got some sleep. It is amazing how we get used to life changes, so things will get easier as you go along. Big learning curve for us all at the beginning though. I’m thinking you must have a lobular tumour because they tend to be more the occult ones and multi focal ??
My remaining breast was too small to match with a normal prosthesis so I used two. The breast forms I used were a Nicola Jane (online) product called equitex silicone shell. I used a hollow one over my existing breast and one filled with the lightweight packing on my flat side. For swimming I used foam prostheses, hollowed out for the existing side. It worked well for me. There’s also a product called recover shell with removable layers and other shells but I haven’t seen them There are padded T-shirt bras which can help smooth any discrepancies. Since the second mastectomy it is all much simpler.
Your breast-care nurses can refer you to a prosthesis fitter and they are generally fantastic. You can get prostheses and bras free on the NHS. They couldn’t supply the equitex for me so I bought my own but they are costly. Every area probably different
About Arimadex. It gave me pain in small joints and very stiff in mornings. I found taking co-enzyme Q10 virtually abolished this. Vaginal dryness was an issue but again there are moisturisers and lubricants to help. I actually stopped arimadex after 5 years because I got osteopenia even though I took fosamax. i changed to tamoxifen for next 5 years and found it much easier to tolerate and no ‘leaching’ of my bone calcium. They seem to use letrazole more commonly now though.
I hope you have some good support around you. It must be a lonely journey for those on their own. Remember you can phone the BCN nurses, or use the “someone like me” service. Also when treatment ends look for a moving forward course in your area or online. They are great.
Well that will give you something to think about. Just take one step at a time and I really hope you avoid needing chemo. Not nice 
but definitely survivable. Let me know if you have more questions. That’s what the forum is for and who knows, my ramblings may benefit others too.
More hugs
Eily. Xx
Hi Eily, thank you for your reply. It’s good to have you by my side, especially as our body shape and experiences sound so similar.
Thanks for all the prosthesis info. Ooooh a new topic for me to start researching and getting familiar with. Thanks for the head start.
It’s been a gorgeous sunny day today. It makes a huge difference rather than all the relentless rain (which is due back tonight, sigh).
Stay well, with love x x
Hi gerbera
I went for a walk this morning and the sunshine made me think of you 
. I hope you are getting some rays too, for this Easter weekend. They are definitely therapeutic. I know the waiting phases are always the toughest so my “stay strong, stay positive” thoughts are with you and anyone else out there in the ‘waiting phase’.
Love
Eily
(An Easer egg or two would do no harm either) 
Hi Eily, YES THE SUN IS OUT!!! We have had a 4 mile walk today, followed by a pub lunch. Then I finished a jigsaw puzzle that I’ve been working on.
My surgeon telephoned me on Wednesday and we discussed options. She had actually properly listened to my concerns which was very reassuring. I have a plan that I can accept and I’m happy. I’m also researching private clinics for a PET-CT scan so I can get the reassurance that I need for my ‘good’ breast.
I’m also going back to alternative duties at work next week, while I’m waiting. That’ll keep me occupied and happy because I love my job.
Take care and enjoy the sun x
Hi your story sounds so familiar to mine.
I have extremely dense breast only the 8mm invasive tumour was found on MRI not seen on mamo.
Grade 1 Invasive 8 mm Tumour
Surgery lumectomy 8mm removed its now Grade 2. then they found another cancer called Mucinous it was everywhere plus a 23mm DCIS plus another 3/4 smaller DCIS my report says DCIS found extensive.
Nothing came up on my screening
I’m now having a double Masectomy on 16th April as my left breast has to go and I wanted the right to be removed. They agreed to this for my peace of mind as I was worried about more DCIS not beimg picked up or even more invasive due to my dense breasts.
They also said because I do not want reconstruction it would allow me to be flat. I do however have to have a psychological assessment before my op to get signed off to say I’m good to go.
If you are that determined to have a double then i would fight this. You have a right to choose. Its your body and your life.
Speak with your Cancer Navigator and explain your situation. Tell the hospital you will have a psychological assessment to prove you are ok to do this.
If you are only after a simple double Masectomy with no reconstruction then they should listen to you.
I was a very loud voice about this constantly. I also wrote to the unit with all my fears concerns and clear reasoning behind my choice.
Good Luck xx
Hello kat-Jack, thank you for sharing your story. It sounds very similar to mine.
This is a blinking minefield isn’t it?! I’ve seen my GP today who will write to the surgeon asking for further clarification around how she can be sure the imaging will pick up any potential tumours in my right breast, when it didn’t pick up the DCIS and second tumour in the left.
I also then spent over an hour on the phone with the BCN asking questions. I’ve got an appointment with the reconstruction specialist on 15th to look at implants and also learn more about simple mastectomies. I am waiting for an appointment with the clinical psychologist. The jury is still out for me - I really don’t know which way to turn.
I hope your psychological assessment goes well and hope you feel supported with your decision. Good luck on the 16th - I hope you are pleased with the result.
Take care and hope you are looking forward to the end of the waiting game.
With love and best wishes x x
I’m sorry you are having to deal with this . It sounds very similar to me . Initially seen with pain . Told it was a cyst in mammo and US . Drained then and there and left the department skipping . Two years later more pain - told 18 mm tumour on Mammo and US . Biopsy identified mixed lobular and ductal. This led to further imaging . MRI suggested 12 mm and 18 mm multi foci tumour with possible area in between being involved - possibly up to 55 mm. Infact after mastectomy I had. 70 mm Grade 2 and 2 pos LN . I was due to have recon at the same time but it didn’t make sense bc the surgeon said she would not do diep flap immediately if radiotherapy anticipated as it can destroy the flap . I was concerned that there was possibly up to 55 mm of tumour due to the MRI findings . So had mastectomy with no recon Oct 23. Had to go back for axillary clearance Nov 23 and radiotherapy Feb 24. Now have lymphoedema in my chest wall and burning pain . Worse every day . Don’t know who to go to . So pleased I did not have double mastectomy . But now have new lump right remaining breast . Have had US - says cyst . Didn’t feel v reassured . Have just had MRI . Waiting for result . So this occult tumour thing is a real problem. And mastectomy is not without its problems . I have dense breasts . I am considering being put forward for a trial where they do a blood test for circulating tumour DMA . This becomes apparent before tumour is visible on imaging .
I am pleased your team is listening . They will work hard to do the right thing for you . I was worried about being flat but after the surgery I was so preoccupied dealing with the wound ,seroma ,burning pain I was relieved not to have had reconstruction . I am content with my prosthesis.
Not sure if this is helpful but don’t worry about being flat . If everything goes well you may well be able to have a delayed reconstruction.
I had a “cyst” September 22. I felt a lump , referred , no mammo as I’d had one in jan 22. Ultrasound said cyst , aspirated . Coujd still feel lump . Had private check on ultrasound . Said was sure was a cyst .
Fast forward 18 months . Went to GP with a lipoma , she found a lump inside.
ILC 2cm grade 2. Same place as “cyst”.
Hi and thank you for your reply. Gosh you’re going through it aren’t you? I’m really sorry to hear about your pain and not knowing where to turn for advice.
Yes occult tumours seem more common than I had appreciated. Perhaps one day advances in research will remove this doubt.
I was interested to read about the DNA trial you mentioned. I will do more research on that.
I find the waiting each time is the worst part. Good luck for your results. Xx