ILC and bilateral mastectomy

I saw my surgeon today and asked him what he thought about my second breast in terms of risk and he said if he was worried he would be having a strong conversation with me. He isn't. I think everyone's situation is slightly different and medically there are different scenarios. I have no genetic predisposition. 

Hi @Eily, I was diagnosed with ILC in my left breast and had a partial mastectomy in November of last year. The pathology results showed the cancer was larger than the MRI detected.I had no node involvement. Then I had 4 cycles of AC followed by 8 weeks of Taxol-I had to stop that because the PN was getting worse. I had the choice of doing another small surgery to get clearer margins and then have radiation therapy or have a single or double mastectomy.I opted to have double mastectomy and Lat dorsi recon surgery with expanders.I choose this because I wanted to minimize the chance of recurrence as well as Avoid the constant imaging etc plus the imaging didn’t pick up the extent of the ILC so that was a concern as well. That was 6 weeks ago and I am having expander fills till my surgery after 4 weeks. Although its a difficult surgery and recovery takes time I am happy with the decision I made. If there is anything else I can help you with,please let me know. Hoping that helps to make a decision.Its a tough one for sure. Best wishes x

Hi @Eily - so sorry to see you here - but welcome to the forum that no-one really wants to join!  :(    

Well done on almost completing your chemo!  Woohoo indeed!!

I was lucky - my ILC was just under the nipple with no node involvement, so I had a lumpectomy & 4 weeks of  radiation (no chemo) and am now on AIs.   My surgeon felt that a mastectomy was not needed & I went with his decision.  My boobs are also dense breast tissue & the tumours were also missed in the Mammogram 4-5 months before my GP found it 'by chance' when she checked me when I was having a pap smear!  Thank GOD for my 'on the ball' GP!

Some women choose to have precautionary mastectomies to prevent recurrence and I can understand why - Angelina Jolie would be one of the most famous, I guess!   It is a very personal choice.   I totally agree with the stress levels going up yearly with the Mammograms/ultrasounds/waiting for results - I had a call back on my 1st annual checkup.  :(  All clear, thank goodness.

As @Mazbeth mentioned - maybe have a chat with a psychologist who specialises in Breast Cancer to cover all the angles  - as the incredibly insidious nature of ILC (and BC in general) means that recurrences may still occur.  :(  

Take care & all the best with your decision making & ongoing treatment xx

Hi, I hope I can help in some way as I know how overwhelming everything can be. Great news that you are almost done with chemo. 😁

I am 53 and was diagnosed just before Christmas in 2019 with ILC. The MRI showed it was about 5cm. It was decided that I would have neo adjuvant chemo involving 4 x AC and 12 x taxol. I knew from the moment of my diagnosis that I wanted a bilateral mastectomy as I have dense breasts. I did not even ask if breast conservation was an option. I have had annual mammograms and ultrasounds for at least 10 years which caused me a lot of stress. I had a clear mammogram and ultrasound in February 2019 and was diagnosed in December of the same year. My surgeon fully supported my decision of a BMX and thought I had made a good decision.

I should add that I spoke with a psychologist about everything and I found that extremely helpful in giving me some clarity.

I finished chemo (no issues) and then had a 5 week break to recover. I had the BMX 6 weeks ago - the MRI was accurate, the tumour was just under 5cm and I had no node involvement and the surgeon got clear margins. I had expanders put in immediately. I could not have the DIEP reconstruction as I have had a previous abdominal surgery.

I got the pathology back a few days post surgery and it showed that I had abnormal cells in my good breast - not cancer, but cells that would have needed attention. These cells have never shown up on any imaging so I am guessing they would have become a problem further down the track when they were large enough to be picked up on imaging.

I have definitely had to recover, but everything has been very manageable and if I am very honest, I just feel absolute relief. I knew that moving forward I would have anxiety every time I had to have a mammogram and for me personally, I knew that was not going to serve me well. I will be starting on Femara and taking it for many years to come. 

This is a very personal decision. I am wishing you well. Take care of yourself. Whatever decision you make will be the right decision for you and I hope you are well supported. Mary-Anne x 

Hi, ive recently been diagnosed with ILC and had a single mastectomy. I believe the reason a mastectomy was recommended for me is because the cancer was thought to be largish and ILC. My MRI the cancer looked like 5.5cm. The position was also sort of 2 cm above nipple at top end but right under nipple. I suppose to get good clearance a mastectomy recommended. I did not have lymph node involvement. The pathology showed other sheet like cancer cells around the main tumor and in total was 9cm. So im glad a mastectomy was done. From what I can gather they try to be conservative whilst considering risk   I was surprised how physically traumatic a mastectomy was. 

I sat in a meeting with my surgeon and my husband post surgery where they discussed the merits of removing my other breast. A bit surreal. Surgeon said we could talk about later when I have recovered. I need more than 6 months of chemo and radio so its more important right now to zap cells. 

I guess your choice of surgery is personal and how you feel about what chance it has for recurring. I would ask about what follow up treatment or monitoring. I got a flap created so I could have reconstruction but surgery is abhorrent to me right now. I am 3 weeks post mastectomy.  I hope this helps.

Michele