My First Blog!

Hi Erin,

So sorry that you are going through this at such a young age.

I did not have to have radiation or chemo, as my cancer was different to yours and had not gone to my lymph nodes. I had a mastectomy of both breasts and I am on Femara. 2 years on.

One thing I have learnt through this, is to speak up. My surgeon said I did not need any ultasounds or MRI as only a small amount of breast tissue was left. I asked my oncologist how will I know if the cancer comes back, was told if I felt unwell for 6 weeks see your GP. Well not good enough for me, my life is far more important. I went to 2 GPS , who did not listen to my concerns. After the 3rd attempt, found the most amazing GP, who agrees that you do not leave things to you feel unwell and was shocked I had nothing done apart from check up in 2 years. I have just had a ultrasound and then MRI , which she will do every 12mths and every 3mths does blood tests ( cancer markers ) and liver and kidney tests, as well as full blood count. My GP told me liver tests are good indication  if something is not right. When I told her my surgeon said I did not need any scans or other tests, she said it is your right if you want them,they should do them. I told her I only have a small amount of breast tissue left in both breats and she said it only takes a small amount to have cancer.  I am just so lucky I have found a GP, that  says you need to be on top of this and do not wait till you are unwell before you get checked out. 

It is 2 years for me and I still worry about the cancer returning, but I know I am doing everything I can .

Take care Debbie

Thank you ladies! I am so overwhelmed by all your touching meassages and are forever grateful to you all! After having read your comments I made an appointment with my local GP. Having now seen her I am feeling a lot more relaxed to say the least! She was more than understanding and is now coresponding with my oncologist to make a plan of attack. I look forward to keeping in touch with you all through this network and wish all of you the very best with your journeys. Love and hugs, Erin xxx

Thank you ladies! I am so overwhelmed by all your touching meassages and are forever grateful to you all! After having read your comments I made an appointment with my local GP. Having now seen her I am feeling a lot more relaxed to say the least! She was more than understanding and is now coresponding with my oncologist to make a plan of attack. I look forward to keeping in touch with you all through this network and wish all of you the very best with your journeys. Love and hugs, Erin xxx

HI erin

I won't bore you with my story but never, ever feel you are paranoid.  You are a young woman who has her life in front of her.  You drive the bus.  If you want a scan yearly - it is your right to ask for one.

I don't want to scare you but my story does is real and I think serves as a reason for vigilence post cancer treatment - particularly for young women with Her2 or triple degative disease. I do have secondaries - have had for nearly 2 years now - my only symptom was a funny spot on the skin of my breast that even the drs ignored for a few months, and this was while I was on treatment for early breast cancer.  Further scans detected numerous lung tumors (so many they didn't bother counting) - I had no symptoms of them at all - even now when some of them have grown to a significant size I have only developed a slightly annoying, infrequent dry cough which if I didn't know I had lung tumors I would blame on the weather.  They don't scan because there is a belief that it doesn't alter the outcome (i.e. the disease is incurable once you have secondaries) - however, I believe if the disease is more contained then surely the impact on quality of life and the ability to manage the disease must be significant. My disease has been contained in y lungs and the occasional lymph node so far.  I often wonder if we had let it go much longer assuming all was ok if it would have spread to my liver, brains and bones before anyone noticed. I am grateful for drs that saw the need to investigate further despite lack of symptoms.

Yes, it is important to relax but there is still a hell of a lot to be said for vigilance and learning to know your body and being assertive in your treatment and management.

I wish you well.

A x

Hi Erin,

I too am so sorry to hear of your diagnosis. There never is a 'good age' to get BC but at 28 your life is just beginning.

I was diagnosed at 38 with grade 3, ER-, PR- & HER2+. Had a lumpectomy, sentinel nodes removed, chemo, radio and Herceptin. That is considered aggressive treatment for an aggressive cancer. I had the same conversation with my breast surgeon and oncologist. Many times. Don't be scared to keep asking them the same questions until you are satisfied and comfortable with the treatment options.

The whole HER2+ diagnosis had me freaked out and I was sure it was a death sentence even though my odds of surviving this were pretty good (I would have been happy with a result of 85% at school!). I was considering having both breasts removed to clear my mind from worry but I was advised that, in the short term at least, my biggest risk is not a new breast cancer but that the cancer they treated will spread.

Every ache and pain sent me rushing to Dr Google and I told my oncologist of every ache and pain that I felt. She helped me have a bit of clarity and to take a common sense approach that, if it is a new and fairly constant pain that lasts for more than 2 weeks it needs to be investigated. You will find that you will be much more aware of your body now and will get to know it on a whole new level. Trust yourself.

I asked for scans when I was first diagnosed to put my mind at rest which luckily were all clear. After my treatment, in my case at least, they considered more scans unnecessary unless symptoms are present. If you have persistent symptoms, keep mentioning them to your doctors every time you see them and they will address your concerns.

I also thought waiting 12 months between ultrasounds and mammograms was too long too, until one of the nurses spread new light on my thinking. She said, "but you found the cancer in the first place, not a scan, so have faith in yourself and be vigilant about checking." Since then my mind has been a little more at ease. Also, as time goes on you do get a little more comfortable with things.

Go easy on yourself and try to ease your stress by doing things that get your mind off worry and relax you. But don't let things linger either. Be straight onto those doctors if you think they need to check you out again!

Good luck my dear. You have come so far already so be proud of getting to where you are today. Keep seeking the answers you need for peace of mind!

Take care of yourself.

All the best xx

Hi Erin,

Welcome to this site - I'm glad you found your way here. If you haven't already ordered a free BCNA My Journey Kit, you can do so online or by calling us on 1800 500 258. It's a fantastic resource with many helpful tips from others who have also been diagnosed.

All the best

~ Annie

Hi Erin,

Welcome to this site - I'm glad you found your way here. If you haven't already ordered a free BCNA My Journey Kit, you can do so online or by calling us on 1800 500 258. It's a fantastic resource with many helpful tips from others who have also been diagnosed.

All the best

~ Annie

Hi Erin,

I am so sorry to hear that you have joined us, I was diagnosed on 16 April 2012, right Mastectomy- Grade 3, ER and PR+, Her2-, the BC was found in my sentinal node and like you I had one internal mammary node involved. I have just completed my treatment, which was Chemo and radiation and am now on Tamoxifen for the next 7 years at least! I was 37 wehen diagnosed with three young children and remember thinking how unfair this all is. I am paranoid like you are and have been told the same by my specialists, 'we don't scan until there are symptoms'. I have learnt a great deal about trust throughout this journey, trust in my body, my family and my medical team. I am here to chat if you ever need.

Jo

Hi Erin,

I am so sorry you are going through all this at such a young age (and you too, Louie!). This is what I was told about having post-treatment scans.

I saw my breast surgeon yesterday after a scare with an infection (scar swelled up and was very red and sore - first time ever in 12 months) - and I asked him the same question. Should I have a PET scan to locate any cancer cells anywhere in the body? What if this was recurrence?

He said that at present, with the infection, I would "light up like a Christmas tree", and that any "hot spots" could raise the blood pressure without actually being cancerous. He recommended having a scan if anything was unusual or really worrying me, or if the oncologist found my tumour marker levels had gone up considerably after each blood test. At present they were in the normal range and had come down since treatment.

I had a bi-lateral mastectomy, so mammograms/US didn't come into it, but if I had concerns I would ask for a scan in a minute. I believe our intuition is as good as a symptom any time, so if you are worried, run with it.

Wishing you both all the very best - big hug - Michelle xx