I was diagnosed in June this year with bilateral breast cancer. Underwent 3 surgeries and had an infection . Finally got clear margins and waiting for radiotherapy which I’m told there’s it least 9 weeks backlog . I’ve been fine up to now . But now I’m thinking if I had cancer in both breasts then surely there’s double chance of it coming back? . I’m worried about this delay . I’m struggling to find anything about bilateral breast cancer online and my doctors say “just unlucky” . Anybody else had it ??
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Hello @tbanks. So sorry you have had the cancer diagnosis - it’s shocking for us all when it happens.
I was diagnosed end of June with an IDC in right breast, on further examination, they found an area of DCIS in both breasts. I had a bilateral mastectomy and sentinel node biopsy in July and got results last week.
There was the IDC we knew about but 50mm of DCIS in one breast and 60mm of DCIS in other breast but also two tiny IDC. Nodes were clear and it was grade 2.
I spoke to my surgeon about bilateral and it being rare but he reassured me it was not as rare as we might think and they aren’t hugely surprised when there’s a bilateral diagnosis. He said I was just unlucky.
Hope all your treatments go well xx
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You did not mention if you have gone through genetic testing. You should if you haven’t already. Bilateral breast cancer is associated with an hereditary predisposition to develop breast cancer more often than breast cancer in one breast.
Yes I was referred in June but haven’t heard off them yet .
That’s good. I hope you hear from them soon. It sounds like you’re in good hands though. Breast cancer is horrible but it happens often unfortunately which means we have good treatments for it.
Hi @tbanks
Sorry to hear your diagnosis and that you have had such number of surgeries and now a long wait for radiotherapy. My treatment went quite smoothly, even if it has took a long time to finish my treatment (except hormone blockers and bone strengthening)
I was also diagnosed with bilateral breast cancer in May 2023. I found a lump in my left breast which turned out to be invasive ductal carcinoma grade 2 20mm ER+ HER2+. Ultrasound and mammogram sizing differed so I had an MRI to decide if I had chemo or surgery first and they found something in the right. It was another primary invasive ductal carcinoma grade 1 0.9mm ER+. Clear lymph nodes in both sides.
I was told that it is uncommon, only about 5% of bc diagnosis are bilateral.
I had a bilateral lumpectomy in July, then Chemo and Herceptin from September, Herceptin continued after chemo, had radiotherapy in January for 5 days of high dose. I started Letrozole, Calichew D3 and have 6 monthly Zoledronic acid (bones). Last Herceptin next week after a year! I was told the outcome for lumpectomy and radio versus mastectomy was the same with my diagnosis. I’ve just had my annual mammogram, which you wouldn’t have if you had a mastectomy, and it was clear.
The oncologist referred me to the genetics team in June 2023, I didn’t hear anything from them until February 2024 and was to,d I was eligible for screening. They already had my blood due to another family issue and said it would be 3/4 months before I would hear. I opted to be phoned and they rang in May to say there was no genetic risk. Had there been a genetic link I would have probably had to have a double mastectomy and fallopian tubes and ovaries removed. It took a year to find out I didn’t need the extra surgery. I was told the risk of recurrence was lower without the genetic risk so I would control receive annual mammograms for 5 years and then revert back to 3 yearly screening. My daughter is eligible for earlier screening just in my bilateral diagnosis, they advised she contact genetics from age 35 for possible screening but it may not start until age 40, still 10 years earlier than standard.
I had no family history of bc, had my children in my 20s and breast fed which supposedly reduces your risk of bc and I get it twice! I think I’m just unlucky. I met one lady at a Moving Forward course who was also bilateral but was if I remember rightly invasive (IDC) one side and ductal carcinoma in situ (DCIS) which is less likely to spread and contained within the ducts.
Im happy to support you. But you may also like to consider Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers where you will be matched with a volunteer who has a similar diagnosis to you. I held off from contacting them as things kept changing and I thought how can they match me.
Again, if you think of anything and I can help I will.
Take care 
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