I remember searching on here for positive posts. So here is one.
I’ve been cancer free for 5 years (ER grade 2, 35cm, zero nodes, treated with lumpectomy,
radiotherapy and Letrozole).
Had a ultrasound today due to being recalled after my 5 year mammogram but it was just a gland. Very traumatic.
I hope someone gets some comfort from this post. Stay strong.
Thank you - that’s great news and helpful . So glad that the recall led to nothing as I think that’s something we all dread . Hope you get chance to do something lovely in the next few days to make up for the stress. Xx
This is great to hear. I’m bilateral er+ 32mm, 6cm DCIS and two micro 3mm. Double mastectomy, no recon, letrozole 10 years.
Just had six month check up, still panic at every bone pain, but hoping this lessens over time. xx
Great news for rdz and others who are doing well. I’m five years on too and doing well.
Lynnc123, I read your post with interest.
I’m usually pretty positive but still get all panicky when the bone pain gets worse. How would we know if it was anything worse? I’ve just had 12 month check up and will see oncologist in 12 months then hopefully be discharged.
Best wishes to all.
So difficult isn’t it.
I had three counselling sessions when we spoke specifically about this and how no one can ever give us 100% reassurance, and we could be scanned every year and still panic in the times in between.
I think I just try and allow myself that panic and then the rest of the time reassure myself that all the tests they did showed no spread and to try and enjoy each day.
My daughter’s friend was killed in a car crash aged 17 - and I think about this often how you can be perfectly healthy and then something happens and nothing is guaranteed for anyone.
Hello everyone
I’ve been reading these positive posts and it reminded me of my situation 17 years ago. I was visiting my very ill, hospitalised. Mother in NZ, far from husband and family, when I was diagnosed with breast cancer. A small town, word spread, and I had four visits from women to tell me how they had breast cancer 12, 15, 20, and 30 years previously and were all disease free. It gave me huge encouragement at the time, and still brings tears to my eyes thinking back
So here I am 17 years after a 43mm, grade3, lobular tumour with 3 positive nodes, and also now, 6 years after another 25mm, her+ tumour in the other breast. I’ve had a lumpectomy, two mastectomies and pectoral muscle ‘shave’, two lots of chemotherapy, 5yr arimidex, 5yr tamoxifen, radiotherapy, a year of herceptin injections and 3 years of zolendronic acid infusions. I just got discharged from all follow-up.
As for recurrence worries, yes the issue is always at the back of my mind. I try to rationalise new symptoms but I do ask my GP to investigate when things don’t settle in a reasonable manner. The 4 weeks of headaches were hypertension, the ongoing back pain was a slipped disc, the 6week cough was sinus problems… what next I wonder?
So here I am, currently on a lovely skiing holiday (and yes, everything is aching:joy:
) but I feel healthy and well, and enjoying a nice rest day.
I love volunteering for BCN and keep an eye on the forums because I feel for everyone starting out on, or immersed in their various ‘journeys’. These stories can seem overwhelming sometimes, but it is important to retain that long term perspective and to remember that for each of you currently immersed in all the horrors of diagnosis and treatment, there are THOUSANDS of us who have been there and are living long, healthy lives thanks to all that treatment.
If there isn’t a separate thread of positive stories perhaps there ought to be, by way of encouragement.
Good luck to you all
Eily
Love the idea of a positive thread
Thank you for your reply. Do peple get regular scans etc? Ive only had one, that was when i visited GP for something and can’t even remember what it was now!!!
My check ups are a physical examination. If i have routine blood tests i ask them to check cancer markers.
To visit the GP or not with anything, that is always the question! I manage to ignore most of it but the fatigue and bone pain really get to me sometimes. Other than that i cant complain and am so grateful for the treatment and care I’ve received .
I haven’t had a scan yet, beyond the initial mammogram and ultrasound after finding the lump.
My six- month check up involved the consultant feeling along scars (double mastectomy, no recon), in lymph nodes and saying all was fine, see you in six months - adding come back if you need us at all. I’d literally be there every other day if I let my mind wander too much!
Absolutely, I would never be away either!!!
I’ve always told myself not to worry, I didn’t before so why should I now? Easier said than done.
Just going on a bit and thinking about other posts, there are 3 on my mum’s side and 2 on my dad’s who’ve had breast cancer. My mums older sister (mum is 97 now), had it in her 30s I believe, so a long time ago, and people didn’t talk about it. As far as I know she only had surgery and lived into her 80s. A cousin same age as me had it about 10 years ago and had surgery and chemo. Another cousin 76 had it in her 30s, surgery only and then tamoxifen, she’s spent her life worrying.
My dad’s sister had it age about 55, went into remission but then it went into her lungs. Daughter of a different sister had it same time as me, but just a partial mastectomy.
I hope I’ve inherited my mum’s genes!!
Sorry about the ramble.
Stay well.
My mum is 20 years post mastectomy and tamoxifen and has never given it a second thought. Yes, hope to have inherited her genes too xx
I think the general follow-up is a yearly examination and mammogram for 5 or 10 years and then back to normal screening. I managed to wrangle 2 yearly breast MRI scans as my first lobular tumour was mostly occult so invisible on mammogram. Even so after normal yearly mammograms and biannual MRI’s my second primary appeared 5 months after my 10th yearly mammogram, just when I had been discharged! (Perhaps it was the celebratory bottle of champagne that did it😂) This one was a fast-growing ductal tumour.
It just goes to show that the best checkup you can have is your own vigilance.
I think the aromatise inhibitors cause a lot of aches and pains. I found co-enzymeQ10 (a supplement available from most supermarkets/health food shops) was very helpful for the joint pains. Also when I swapped from arimidex to tamoxifen it was much easier.
Eily xx
I’m finding these stories of peoples journeys so helpful. To hear positivity and hope in the face of adversity is so uplifting. When treatment is finished and healing is still incomplete the void of silence from the clinical staff can make you feel insecure of the future. I think we all know it’s a wait and see and be vigilant but that’s as much as we know…. These stories lady’s are encouragement… thank you so much for sharing.
I was ER grade 2, zero nodes, lumpectomy, intraoperative radiation, chemotherapy and letrozole (still on letrozole). Cancer free for 10 years now. I’ll never forget my oncologist using the word “cure” with me. That’s something most doctors are loathe to do. But I had an aggressive form of cancer - my oncotype was over 40. He said “if we have any hope for a cure, you should do chemotherapy” - that was due to my oncotype results. But his use of the word “cure” gave me such hope! I know my cancer could come back anytime, but just that little bit of hope was so uplifting! And, by the way, he was a world-renowned senior oncologist.
Hello fellow members. I just joined today because I just got my biopsy results in MyChart and won’t be getting a call from anyone until Monday (it’s Friday, biopsy was done on Wed). I’ve been scouring the internet to find out how bad my results are and what is my next step.
I’m turning 70 this year, very active, normal weight, and a mother of 4 kids, breastfed them, no family history of BC. and BRACA test was negative.
Mammogram in Dec 24 showed a spot so dr. wanted a follow up with ultrasound. Jan 30 Found a 6 mm spot near the chest wall so scheduled a core biopsy with ultrasound. Feb 19, biopsy where they placed a pin at the sight where they took the core samples. Had another mammogram right after to make sure they could see the pin. The spot is so far back it is hard to get a picture of the pin (thought the technician broke my rib trying to squeeze me into the vise). Biopsy results came in as Invasive ductal carcinoma with apocrine features. HER2 and hormone results pending. I am still in shock and I haven’t learned much from the internet.
Has anyone had anything similar and any advice?
Thank you!
Hi @boilergirl
I am sorry that you have found out your results via your hospitals patient accessible records and that you now have a weekend to worry and make sense of what the results mean. I’m not surprised you are in shock. It’s shock enough being told by the Consultant in the usual way but at least you have the opportunity to ask questions and are provided with a plan and written information to take home with you.
I’m not familiar with MyChart so have done a little research. I’ve found the following:-
‘Results are not always available on MyChart. You will never see sensitive results, and others are only added if the clinician feels it’s appropriate or has already discussed the results with you.’
This obviously isn’t the case for you so I’d be inclined to raise it when you next see/speak to someone.
Have you been offered a follow up appointment to discuss the biopsy results? If you haven’t, ring the Breast Care Nurse/Team and inform them you’ve been able to access your results online. Hopefully they will be able to answer your questions and if you haven’t got an appointment date, they will be able to sort one out.
Hope that you have someone to support you over the weekend. X
When they took the biopsy they asked if I wanted to see my results in MyChart and I said yes. I messaged my doctor that the results were in and the nurse called me today to let me know that they are referring me to a breast specialist and the doctor’s office will call me next week by Tuesday to set up an appointment. I also have primary hyperthyroidism and have an appointment with the surgeon for that on Monday to schedule that surgery! I’ve been healthy all my life but since October 2024 things have gone downhill with bilateral pulmonary embolisms and now I am on Eliquis. Then they found the hyperthyroidism bc my Calcium level was too high so checked the parathyroid hormone which was also very high. Waited 2 months to get into an endocrinologist only to find that my right lower parathyroid gland is enlarged. Now this breast cancer diagnosis!!! When it rains it pours!