Hi, first time posting, after some late night doom googling I decided probably better to get some better advice from you guys!
I have recently been diagnosed with initially
A 9mm Invasive Ductal Carcinoma (IDC) Grade I ER8 PR8 HER2 negative . Was due to have a lumpectomy and radiotherapy.
However MRI then revealed a 5mm Invasive Lobular Carcinoma Grade 2 ER8 PR8 in the same breast
So I’m now having a single mastectomy in a few days time with reconstruction. Won’t know if I need radiotherapy or chemo until after sentinel node biopsy
I wanted a double mastectomy, but was refused due to not fitting NHS guidelines.
However they had not realized I was Jewish, and I should have had gene testing weeks ago. I’m now going to have to wait 6 weeks for gene testing., if positive I can then have right breast removed.
Has anyone else had 2 different types of cancer at the same time, and do you think it’s likely to be connected to a BRCA gene defect?
In which case I might have to get over one surgery, only to go through it all over again a few weeks later.
Really hoping that Im not unusual, as I’m now lying in bed worrying about getting ovarian cancer, and I haven’t even dealt with the breast cancer yet!!!
Hi Caron
I had 2 types triple negative and high grade DCIs it is a shock at first but with help and support you do get through it I am past the menopause , just concentrate on the hear and now and not worry about anything that hasn’t happened yet good luck x
Welcome to the forum @caron
I am sorry to hear what you are going through and it’s now wonder you feel worried with so much uncertainty. The forum is full of kind, helpful people and I hope you find the support you are looking for.
Please know that our nurses are here for you any time to chat through any worries at all. You can contact them here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.
We’re thinking of you,
Lucy
Dear Caron,
So sorry to read, how anxious you are feeling this is quite understandable and normal I think you’ll find in most cases once an MRI has taken place. your diagnosis can change.
I’m not medically trained to give you advice, but I’d like to wish you well. Going forward with health and happiness. Take one day at a time. I know this is always easy to say, meeting up with that special friend for a nice cup of tea (or something stronger) a good old chat hopefully will make you feel better
With the biggest hugs my brave lady, please come back and let us know how your getting on.
Love Tili 
Thanks so much for your kind words, it’s something about the dark hours that makes the mind go to the worst places! I took my dog for a long woodland walk today and watched him play in the river and somehow everything seemed a lot more manageable!
Sending you lots of love and wishing you well in your recovery.
Hi Caron
I referred myself for pea-sized lump in my ‘better behaved’ breast in May '22. It was invasive mucinous bc (quite rare but not aggressive). 21mm Grade 2 Er+ Pr+ Her2-
Diligent surgeon had thorough investigations made on my other, historically troublesome breast of calcification, cysts, lumpiness and tenderness - long term symptoms and I’d been having annual mammograms for about 20 years. The more serious invasive lobular was found lurking there, only after biopsies (not seen on mammo or ultrasound): 11mm, Grade 2, Er+ Pr+ Her2-
Opted for (and surgeon agreed) a double mastectomy (staying flat) re strong fam. hist. Sister was tested for BRCA1 and 2 genes but was negative so it wasn’t considered necessary to test me too. Had axillary clearance after one dodgy node spotted (not a sentinel one) and found to have extracapsular spread, followed by radiotherapy on chest wall that side. (Oncotype DX score indicated chemo not considered beneficial.) Took Anastrozole (AI) and zoledronic acid infusions (bisphosphonates) over a period of 10 months but decided they were having too great an impact on my life so gave them up.
I don’t think it’s that unusual to have 2 diffferent cancers simultaneously, but we are special 
(Sorry, Caron - maybe too much info at this stage. Have faith that you will manage once you’re on the treatment track, but yes, the hours of darkness are a torment. Try not to assume the worst … although we’ve all been there !)
Hi Misty, thanks so much for sharing your experience with me, and no it wasn’t too much information…I’m hoovering up everything I can find right now! It’s been very reassuring to realise its NOT that unusual to have 2 types of cancer.
I think I was quite naive at the beginning of my diagnosis, and it then hit me quite hard. But I’m coming to terms and hopefully, with the help of the lovely people in this forum, learning to take each day as it comes and not disaster scenario.
I really hope you are starting to feel better in your recovery journey. Thanks for including me in your special club!!!
You’re very welcome, Caron, and thanks for your good wishes. The very best of luck to you x
@caron
Have you read anything about dr Liz o’riordan who was breast surgeon, diagnosed with breast cancer. I think she had distal and lobular cancer in same breast… she does blogs and videos so easy to find via google.
Laura
Thanks Laura, I’ll have a look at her. Xx
I just wanted to pop a note on here to say that you can fight for the surgery you want. Even if it means stating that you want a second opinion from a different hospital.
My surgeon told me she was doing a single flat mastectomy! She got a shock when I outright refused the single, and being flat. I was a 30JJ and have a few medical conditions, so a single would have left me so lopsided and in a lot of pain. I was never going to entertain a flat closure at 36 years old, and, I wanted to be able to use the resources (my big boobs) if I could. It took 3 weeks of me sending fully medical referenced emails, phone calls, apts, etc., but we eventually agreed on a bilateral goldilocks mastectomy with full node clearance. Im honestly so glad I stood my ground, as so many people I have talked to wish they had an alternative surgery. Im happy with the outcome, but its definitely worth pushing if thats whqt you want!
I’m so pleased you found the strength to push for what you wanted. I did know I was entitled to a second opinion, but tbh the more options I was given the harder I found it! I would have liked to push for the double ( I fall into the lopsided category of 32 E) but was just too fearful to wait much longer in case of delays / cancellations.
I’ve just had single with tissue expander implant on Monday. I’m in a lot of pain, and not sure yet if I’ve made the right decision…only time will tell.
I wish you all the best in your recovery, and really admire your strength and fight. Xx
Its so hard, and when you’re in the midst of it all, just too much. I really hope the pain eases for you. You got this 
xx
Hi caron
I was diagnosed with LCIS,DCIS,Invasive lobolar and invasive ductal. I had it in the exact same position in each breast, felt like an oddball and took me a long time to get my head round it.
Hiya, I’m sorry to hear about your diagnosis. I hope you’re doing well at you stage of treatment.
I’ve since met a fabulous woman going through treatment alongside me who has 4 different cancers, all requiring 4 different types of treatment! Now she really is special!
One thing I’ve learned on this messy old cancer journey is that every day is a school day !
Dear Caron
So sorry to hear what you are going through. Troubling and uncertain times indeed. If it helps I had a triple negative 30 years ago at 38 and have recently been treated for an HR+. As others have shared, the cancer journey is rarely smooth and the early hours of the morning can be very tough. It helped me to know I was not alone in the dark hours - I hope knowing you are not alone and others will be thinking of you helps lighten the load a little. Also as treatment progresses and real life takes over bit by bit the cancer/(s) might move a little more into the background of life.
All the best -
Just wanted to say I really understand what you’re going through. Originally diagnosed with Er+HR+HE- ductal cancer.As it was so close to my nipple chose a mastectomy. After the op the results came back Lobular cancer too which hadn’t been picked up on mammogram scan or biopsy. To say I was shocked was an understatement. Still coming to terms with it but getting better.
Love this group. So helpful. Wishing you all the best on your journey too.
Dear Clobo1 and. WBM1711,
After reading both your posts, I would like to wish you both a happy and peaceful weekend, let’s hope with lots of sunshine.
We are all here for you, anytime day or night keep posting, unloading any worries you may have, feel sure you’re get a great response from many lovely ladies.
Wishing health and happiness going forward with the biggest hugs.
Tili
Hi Caron,
I recently diagnosed with two types of breast cancer: A triple negative high grade In Ductal Carcinoma (IDC), which was bigger than 2mm on November 2023, and grow to near 3 mm on April 2024, and a double Negative Carcinoma. (note that it has been seen in my routine Mammogram on Sep 2023 but my American doctors didn’t tell me anything until the end of the March 2024!). I am going through an aggressive treatment for it at the age of 42.
I had my gen test at 2021, two month before I received the Covid_19 vaccine (Moderna) and I didn’t have any mutation in any genes to any diseases (They test 47 genes). I showed sever reactions to COVID Vax and I am registered Adverse Event of COVID_19 vaccine. Now I have these types of cancers. Awful! I talked to several Oncologist in my home country, Iran, they stated these recent years the prevalence of TNBC got increased. Also, articles say the same thing is happening in the US.
- The research shows that “About 10 to 15% of triple-negative breast cancers in Caucasians test positive for mutations in the BRCA1 gene. In the African American population, about 35% test positive.” It stated “the study find mutated genes that are linked to an increased risk for TNBC. They are: BARD1, BRCA1, BRCA2, PALB2, and RAD51D.” “ The team also found strong support that 3 other mutated genes (BRIP1, RAD51C, and RAD51D) moderately increase the risk for TNBC, when they were previously thought to only be associated with ovarian cancer.”
You can find the article here:
Thanks for your lovely reply, it really is a bit of a shock readjusting to different stages of diagnosis.
I feel so much calmer than the initial stages now, and far more informed.
You’re absolutely right, that knowing others are going through similar situations helps so much and with time comes acceptance and perspective!
Wishing you all the best xx