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My First Blog!

Erin BErin B Member Posts: 4
edited March 2013 in General discussion

I am new to the BCNA blog. I was diagnosed at the age of 28 with grade 3, ER and PR negative, HER 2 positive and 2 positive internal mamory nodes involved. I have just completed my 6 months of chemo and now have 9 months of herceptin treatment to go.

I am finding this a very daunting time in my life as having now completed chemo I am just so scared of the cancer returning. I have just had a review with my breast surgeon which all went well. My only concern is my routine scans only involve having a ultrasound and mamogram. Does anyone have CT scans yearly to see if it has spread? My surgeon advises me he relies on symptoms only! But how far do you let a symptom go before you run to the doctor? I am trying not to stress myself about it but can't help being a little paranoid!!!

Comments

  • LouiseTurnerLouiseTurner Central Coast NSWMember Posts: 1,610
    edited March 2015

    Hi Erin,

    Like you, I have just completed 6 months chemo also and have Herceptin till November. I read about a typical response from women who when they complete chemo might have some anxiety resulting from the shock of previously having had so much medical attention through treatment to a feeling of being cut loose when it finishes. Even worse for those i think not having herceptin.

    I feel like this, I also feel like I want a CT scan now just to check, and I have this pain in my spine....could it be? It is a very weird place to be in, on one hand im feeling silly and paranoid, but on the other hand, its the feelings of thinking something is not right that took us to the doctor in the first place.

    Im still tossing up whether I will appraoch my GP to discuss how Im feeling. But i thought that after all the treatment and surgery is over we have CT scans or MRI yearly for Im not sure how long. I guess I have unanswered questions too.

    You being so young, you poor thing, to being going through all this. I thought 40 was bad enough! They must have thrown everything they had at you re treatment and surgery, and so many things for a young women to consider/plan with having a family etc.

    I have learned through this BC experience so far, that sometimes we just have to trust our medical team....but sometimes we need to take matters into our own hands and insist on whatever it is to settle our fears. Maybe its a second opinion, maybe its just a chat with a GP, maybe a session with the breast care nurse, maybe just blogging here on the network.

    maybe i'll make that appointment with my GP......

    Take care

    Louise

     

     

     

  • Michelle_RMichelle_R Gold Coast QldMember Posts: 900
    edited March 2015

    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

     

  • Michelle_RMichelle_R Gold Coast QldMember Posts: 900
    edited March 2015

    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

     

  • Joey_36Joey_36 Member Posts: 51
    edited March 2015

    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

  • Melindak75Melindak75 Member Posts: 8
    edited March 2015
    Hi Erin,
    You sound like me.. I had chemotherapy, radiation, hercepton, double mastectomy, all the rest. I think they really give you everything when you're young. I was diagnosed at 34.
    After all of my treatments finished, I was scared of everything. Every time something didn't feel right I would think here we go again.. But so far so good. I am back to good health, I won't say that I'm back to my old self, because that girl is gone. However even though my oncologist says that most people don't want all the tests on a regular basis, I insist.
    It really does help me feel calmer that if there was something going on I would know. So I go back and get the MRI, bone scans all that stuff. Even though it is
    depressing to go back into that patient mindset, it's worth it for the reassurance that it brings.
    You will naturally feel scared and paranoid, most people won't understand. But you need to insist on getting whatever you feel that you need for your own peace of mind. Especially that you have just finished chemotherapy you will feel the most vulnerable right now. Your mental strength will start to come back with your physical strength and it will get a bit easier.
    I'm having all mine redone next week, even though I'm sure all is good...
    Good luck with the herceptin I did it for a year and it was
    fine, didn't notice any side effects. I hope it's the same for you. Xx
  • Annie GayedAnnie Gayed Member Posts: 204
    edited March 2015

    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

  • Annie GayedAnnie Gayed Member Posts: 204
    edited March 2015

    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

  • PinkMumPinkMum Member Posts: 2
    edited March 2015

    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

  • MandaMooMandaMoo Member Posts: 500
    edited March 2015

    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

  • Erin BErin B Member Posts: 4
    edited March 2015

    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

  • Erin BErin B Member Posts: 4
    edited March 2015

    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

  • Debbie JDebbie J Member Posts: 322
    edited March 2015

    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

     

  • Debbie JDebbie J Member Posts: 322
    edited March 2015

    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

     

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