I am trying to get in touch with anyone who had a second diagnosis of a new breast cancer.7 years ago, I was diagnosed with Occult breast cancer. The cancer was diagnosed in my nodes on my right side but NO primary source was ever discovered despite numerous scans. It was very bizarre. I had all my nodes out, radiation to breast (although no lump was ever found) 11 rounds of chemo, and 1 year of Herceptin (Her2+). I survived, got stronger, walked, ate healthly and lived an amazing life…….until
5 years later (Oct 2019), despite having a CLEAR mammogram, upon clinical examination, a small lump was found on my LEFT breast. Biopsy showed cancer in lump, and also one node. I was in deep shock. This cancer was diagnosed as TNBC - a completely new (and in my mind worse) cancer than last time. I am still at a loss to understand how one can have 2 different types of cancers. Once my treatment was finished for my first diagnosis, I stopped worrying about it coming back after 5 years but this was pretty much spot on the 5 year mark. I had my chemo through the Virus pandemic as well as surgery. I am waiting for that to heal before I move on to radiation. I will not require any immunotherapy. The isolation of having chemo alone and going into surgery without a friend to hug me or be there when I woke up was so awful, and I have had to do a lot of care myself including blood thinning injections, bone marrow injections, change dressings and deal with side effects, in isolation.
Good news is that cancer has GONE. Side effects from chemo were so awful I have had to blank them out of my mind but it certainly did its job. I would like to hear from people that have had 2 different types of breast cancer on different breasts and how they have coped with it. I feel unique and angry that my body has caused this and why twice which is so unfair. But I am also grateful that my body has fought it and poisoned it so it has gone. I will never be able to stop thinking about it coming back in the future but that is something I will need to try and push to the back of my mind once I am through this.
2012 I found a lump in left breast…it was a benign hfibroadonoma … all good I thought , get it out and move on,…but the histology Results showed a 4mm area of DCIS ( stage 0 cancer) …it was low grade and I was told no radiotherapy needed.
Fast forward to 2018…I had been discharged from annual surveillance mammograms when I got a persistent pain in left breast. I got myself referred back to breast clinic…no lump , but once again DCIS, medium to high grade this time…as it was 34mm and I had already had surgery that side, I had a mastectomy… this time it was ER+ so I began tamoxifen.
My Screening mammo was due April this year, but cancelled due to Covid, got phone call May to go in next day, 2 days later got recall for biopsy’s and 9 days later diagnosed with Grade 2 ER+ PR+ HERneg 12mm cancer on right breast, new primary …I had surgery last week and now waiting on final results.
Covid just makes a bad situation worse but what can we do …
up to now I will be having radiotherapy unless I have any grade 3 not picked up in biopsy or any in nodes ( they took sentinel nosies although they looked clear on scan).
so I definitely feel your pain but I guess life’s not fair, some people get cancer Only once but with really poor outcomes…so I’m trying to take the positives from my own Situation and keep upbeat, but it’s hard I know.
I had a triple negative cancer in my left breast in 1992.I had a lumpectomy, chemo & radiotherapy. Now 31 years later I have a hormone positive new primary cancer in the same breast. I am waiting for results of a PET-CT scan to check some nodes in my collarbone and a large node on the side of my oesophagus. Very worried
Good luck. If you can’t get to Melbourne this year keep it in your things to do list. i managed to do a lot of globe trotting after my first diagnosis in 2003. Exciting holidays are now on hold but not for too long I hope.
How’s it going sissjg? I can see I have sent you two messages but repeated myself. That shows how befuddled my brain is these days. I can’t blame breast cancer though. Just older age.
Just reading your post 3 years on and I wondered how you have got on? I had triple positive BC in 2020 and triple negative on the other side in 2022. Nearly through treatment but still reeling in disbelief.
Nancy
Hi, I have just been diagnosed with a second primary breast cancer.
In March 2020 I was diagnosed and treated for Triple Negative breast cancer in my left breast.
At my 3 year mammogram I was called back fir biopsys and on 15th Sept was advised that I now have a new breast cancer in my right breast this time it is hormone receptive.
I had my surgery last week a lumpectomy and am mow recovering from that.
Hopefully I will not need chemotherapy this time but I will have radiotherapy and hormone therapy.
Anyone going through the same ?
Take care.xx
Hi Sparkle54
Just wondering how you are doing?
I have just had a 2nd primary diagnosis, Estrogen +, same as in my other breast 2 years ago.
Was picked up on my 2nd yearly mammogram.
I have been advised that a lumpectomy with rads again and then Zoladex amd Letrazole.
So scared, I’m 46 with children.
Hi cazb1,
Thank you for your message.
I am doing ok thank you my only demon at the moment is my severe menopause symptoms which I am finding very debilitating. This also helped me shape my treatment or lack of.
I like you am on my 2nd primary BC journey but I am grateful that I am in control of my treatment this time,it really amazes me how treatments are pushed/suggested that offer very little benefit to the patient.
I was due to start letrozole but due to my menopause symptoms put this on hold.
I saw an oncologist 22nd Jan to discuss hormone inhibitors,when I asked what %benefit 10 yrs on Letrozole would give my survival/non reoccurance rate it was only 8% so for me going through what I am experiencing at the moment it was a definite no thanks from me.
I am aware and fully accept possible consequences but after my first cancer journey where I felt like I was on a conveyer belt and had no input I am happy with my choices.
My children are in their 20’s but my decisions were also made with them in mind.
I hope you are doing ok and have minimal side effects from all aspects of your treatments.
Thank you Sparkle for your reply.
I feel more scared this time around, just can’t seem to dampen the dark thoughts.
My youngest child is only 9 so I feel at rhe moment that I will do what is suggested re hormone therapy.
Although I have been taking Tamoxifen for 2 years and it would appear that it didnt work that well for me, given my new circumstances.
I’m happy to hear that you are doing well and I admire your decision to choose your own treatment.
Wishing you well also
Take care xx
I totally get it, when you get diagnosed again you automatically think the worse.
My new primary was different to my first. First time round I had TNBC in left breast,this time it was er+ and pr+ in right.Not sure the fear ever really goes away we all just develope our coping mechanisms. I have started to do couch to 5k. I have to do it on my treadmill previously known as an expensive coat stand, as I am not up to running around outside because I sound like I need a defibrillator but TBH it is the only 30 minutes 3 times a week where I can really forget everything,be on my own and totally focus on the programme while listening to music I love. Honestly the time flies by.
I have also decided to start cold water swimming this year as well,just waiting for the weather to improve a bit.It is supposed to be great for mental wellbeing and physical health.
TBH if I was younger with younger children I would have chosen to take all the treatments but being a lot older my hormone levels are so much lower than in younger women so the benefit to me isn’t as high.
Hi,
just thought I’d share my experience with the caveat that ultimately we all have to decide what treatment we are prepared to accept and then hopefully be able to live with our decisions without regret.
I was diagnosed with a small er/pr positive tubular breast cancer and some low grade dcis in right breast in 2017. After considering all treatment options, in particular that tubular is considered low risk, I opted for radiotherapy after surgery but declined Tamoxifen. Oncologist was supportive of this but I never even considered the risk of a second primary and it was not discussed with me. Recovered from treatment quickly and moved on.
Fast forward to my last surveillance mammogram in 2022 before being referred back to the national screening programme and I was diagnosed with a 30 mm er/pr positive primary in my left breast. Lucky that although it was stage 2 was low grade so avoided chemo.
This time Oncologist strongly recommended hormone therapy.
I have been on Anastrozole since November 2022 and living with some pretty unpleasant side effects. I have many days when I am very tempted to stop it but my fear of a another primary stops me. I never want to have to deal with a cancer diagnosis again.
I often think back to my decision to decline hormone therapy the first time round and wonder if I could have avoided the second primary. For me living with the what if’s has been the hardest part. Of course non of us can turn the clock back and hormone therapy reduces but does not eliminate the risk so all we can do is make sure we’ve educated ourselves with all the available information and decide what feels right for us.
If u asked me do I regret declining the Tamoxifen first time round I’d probably say yes but of course that’s with hindsight . Hope wherever you are on your journey you are coping and being supported xx
xx Sparkle.
. Hope wherever you are on your journey you are coping and being supported xx