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Topic: Severe pain and fatigue

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Dec 2, 2018 08:27AM - edited Dec 2, 2018 08:34AM by Andersong1

Andersong1 wrote:

hi all. I am wondering if anyone is experiencing the same kind of pain as me?

I was diagnosed with BC June 2015 due to oestrogen. I had surgery to remove and 3 lymph nodes. 2 wks later further surgery to remove all lymph nodes in left arm as cancer had spread. It then transpires I have the Brca 2 gene (breast and ovarian cancer) I was advised that I need hystorectomy and double mastectomy as the cancer will return.

So I started chemo October worked all way through it until 4th treatment I was rushed to Beatson 12 days with sepsis. I then finished chemo December 15. Jan 16 to Feb 16 radiotherapy. I commenced treatment to shut ovaried down until April 16 full hystorectomy. I then commenced Letrozole (10 years) it causes me intense joint/bone aches. I also get severe flushing from menopause to the point im going to collapse then Sept 16 double mastectomy with latissimus dorsi flap and reconstruction with implants.

My lungs collapsed in surgery and my skin broke away so they had to take more skin from my back and put spacers in. The pain was and still is unbelievably intense. From Oct to Dec I got injections to stretch skin. The whole time I struggled with walking due to pressure on my back and spasms on my front and side.

April 18 they removed spacers and I got implants. I had haematoma and got rushed back to Surgery. I was then overdosed with meds which affected my liver so I was kept in for 10 days. I then took small infection but once cleared I went back to work 4 months later. I used holidays to work part time but i struggled every day sue to pain on bones and also severe front and back ache. I've had physio just keep doing exercises (don't help) pain clinic cant advise anything further. Acupuncture didnt help. I've now been diagnosed with fibromyalgia I also now need b12 injections 3 monthly and have muscoskeletal aches and neuropathic pain. I was sent to breast cancer place for massage I went for ist appt and after 15mins light massage my back and side had sever spasm my implant moved. It has now detached from muscle and is moving under my arm. I now need surgery to stitch under my good arm to stop it moving again and to reposition the implant.

I have now put in for ill health retirement as I struggle on a daily basis with tiredness and pain. I bubble quite a bit for no reason (not about cancer as im not that bothered about that) it's because I'm not me. I was a worker done everything. Now I can't even pull myself off floor or chop carrots etc. I'm a shadow of what I was and I'm getting worse not better.

I wish I never had ops but it wasn't an option. I've to go back to occ health Jan 19 to see if I qualify after getting new pain and anti depressant meds started oct. This is now dec and I'm still the same. I'm not bubbling every 2 mins though but still not same.

Im 41 hand 8 year old and 12 year old. My mum has moved in with me as I struggle with everyday things.

The occ health was initially dismissive as she said your too young to retire but it was my go that adv me. He sent report so I'll wait until Jan.

I would really prefer if I wasn't in pain and forgetting everything at work (senior who gives advice) as I would never have pursued this but I'll wait and see. Is there anyone else in same sort of position

Dx 6/3/2015, DCIS, Left, 2cm, Stage 0, Grade 2, 1/15 nodes, ER+, HER2+ Chemotherapy 10/7/2015 Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/11/2016 Zoladex (goserelin) Surgery 4/15/2016 Hormonal Therapy 4/15/2016 Surgery 9/18/2016 Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Targeted Therapy 10/10/2016 Surgery 4/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/10/2019 Reconstruction (right): Silicone implant Hormonal Therapy Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel Surgery Lymph node removal: Left, Underarm/Axillary Surgery
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Dec 2, 2018 04:02PM Moderators wrote:

Hi Andersong1-

We want to welcome you to our community. We are so very sorry for all of the pain and complications, reading your story broke our hearts! You have been through so very much. We just wanted to tell you that we're all here for you, and you will find support within this community. We hope some of your pain and issues begin to resolve, and that you and your team can find better solutions when you see them next.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 2, 2018 06:09PM - edited Dec 2, 2018 06:10PM by Andersong1

Thank you so much for your kind words but not sure I hold out much hope I have tried everything on letrozole another 8.5 yrs and cant get anything else this causes severe aches. Just continue to plod on gx


Dx 6/3/2015, DCIS, Left, 2cm, Stage 0, Grade 2, 1/15 nodes, ER+, HER2+ Chemotherapy 10/7/2015 Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/11/2016 Zoladex (goserelin) Surgery 4/15/2016 Hormonal Therapy 4/15/2016 Surgery 9/18/2016 Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Targeted Therapy 10/10/2016 Surgery 4/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/10/2019 Reconstruction (right): Silicone implant Hormonal Therapy Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel Surgery Lymph node removal: Left, Underarm/Axillary Surgery
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Dec 2, 2018 06:24PM CBK wrote:

Hi there - Andersong1

Some of your stats and look very similar to mine. I’m brca2 Can you include stats?



Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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Dec 2, 2018 08:05PM Andersong1 wrote:

hi I have updated everything to the best of my knowledge gx

Dx 6/3/2015, DCIS, Left, 2cm, Stage 0, Grade 2, 1/15 nodes, ER+, HER2+ Chemotherapy 10/7/2015 Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/11/2016 Zoladex (goserelin) Surgery 4/15/2016 Hormonal Therapy 4/15/2016 Surgery 9/18/2016 Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Targeted Therapy 10/10/2016 Surgery 4/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/10/2019 Reconstruction (right): Silicone implant Hormonal Therapy Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel Surgery Lymph node removal: Left, Underarm/Axillary Surgery
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Dec 4, 2018 08:43PM CBK wrote:

Andersong1-

You need to change your Settings under diagnosis to Public... that will enable us to see your history and comment better...

Make sense?


Dx 3/26/2017, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2- Surgery 5/11/2017 Mastectomy: Left, Right; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/22/2017 AC + T (Taxol) Surgery 1/25/2018 Prophylactic ovary removal Hormonal Therapy 2/18/2018 Arimidex (anastrozole) Surgery 4/9/2018 Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 9/28/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 4/3/2019 Reconstruction (left): Nipple reconstruction, Silicone implant; Reconstruction (right): Nipple reconstruction, Silicone implant
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Dec 9, 2018 06:12PM Andersong1 wrote:

yeah thanks I think I've done it now gx

Dx 6/3/2015, DCIS, Left, 2cm, Stage 0, Grade 2, 1/15 nodes, ER+, HER2+ Chemotherapy 10/7/2015 Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/11/2016 Zoladex (goserelin) Surgery 4/15/2016 Hormonal Therapy 4/15/2016 Surgery 9/18/2016 Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap, Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Targeted Therapy 10/10/2016 Surgery 4/29/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 1/10/2019 Reconstruction (right): Silicone implant Hormonal Therapy Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel Surgery Lymph node removal: Left, Underarm/Axillary Surgery

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