Hi Phoenix58

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Hi Phonenix58. I would just like to introduce myself & tell you a little about me. I am currently 60 years old. Like many of you this journey has not been easy. In 2019 l was diagnosed with a particularly aggressive breast cancer. After the initial chemotherapy was unsuccessful, I was prescribed further chemotherapy & subsequently under went a mastectomy & radiotherapy. Lymph nodes were also removed as my cancer had spread to them.  All which had an a effect on my heart. Which lead to referral to cardiology. Fast forward 2022/2023. I'm still undergoing treatment but each blood test is showing extremely low blood counts. This has resulted in many scans & blood transfusions etc (we know the drill folks!). I'm now just over 5 stones, having started at 8 stones. I'm was noticing distinct deterioration & changes. So after all the tests l was recently informed l have secondary breast cancer in my bones. I don't know whether l was just trying to avoid the possibility, but l was completely shocked. Should have known something was up when a breast cancer nurse took me into my appt (that had been made as an emergency & remained). All of it is challenging, but one of the most challenging was how and when do l tell my 23 year daughter. She is an only child, so no sibling support. Eventually it was taken out of my hands. She had noted the intensity around hospital calls etc. Unfortunately although l could give her the facts it was worse than her fears.

Thank you if you have taken the time to read my story. I've noted that not many people respond on this forum and l fully understand why we are in a similar place of fear & sadly pain. However it has been a huge benefit to express where l am at in a forum where l know others will understand. I wish you all the very best 

  • Hi Phoenix58

    Weldome to the forum and I am sorry to hear that you have been diagnosed with Secondary Breast Cqncer in your bones. You might also find it useful to join the Breast cancer forum and the secondary breast cancer forum as they are a bit busier than this forum. 

    Wishing you the best of luck with whatever comes next.

    Best wishes

    Daisy53

    Community Champion Badge

  • Hi Phoenix , Iam sorry  to hear  that you have all these problems.  I am in a similar  situation  to  you.  I am 78 and have had a double masectomy,  2017/2018 and decided against a reconstruction. I thought  I was clear then in 2021 I found a swelling in my sternum and after investigation  and scans I was told I  had bone cancer in several places, and this April they found a brain tumour.  I have had in total 90 chemo sessions. I go for regular PET scans and in some areas it has reduced. Phoenix  I think you have to stay positive.  . I know it is very hard   for the family . I go to my appts myself   that is how I deal with it. I wish you all the best.

    • Daisy can you forward this reply on to phoenix. I don't  know how to do this. Thanks
  • Thank you so much for your response Daisy. I will definitely follow up on your recommendations. 

    Best Regards

    Phoenix58

  • Hi Marybernadette, l am so thankful for you reaching out. Particularly while so much is also going on with you! l I am in awe of you, please share your secret of staying positive. Do you have a close knit supportive family? That is something l am lacking and l think it makes a difference. l also prefer to go to appts myself. I would love to hear from you again. Just press reply at bottom to respond to me      

  • Hi Phoenix lovely to hear from you. I have always tried to sort my problems  out myself. I have been married for 51 years and been with my husband for 57 years.  I have son and daughter  but try not to worry them. My daughter  had DCIS  6 years ago and had a masectomy.  She goes for regular  check ups. I have alot going on  but I stay positive  and go for all my treatment.  I have been  on Paxitaxel  iv for  1st time 6 months and now for the past  2 years . I go every week 3 weeks on 1 week off.i get very tired but it is what it is.  There is new treatment all the time and clinical trials.just take everyday  as it comes. For pain I am on morphine and Gabapentin  and it works for me. What are you taking?

  • Hi Marybernadette, we are quite similar in that l have l always just got on with things by myself. Wow! obviously met your soulmate at an early age. Not many are that lucky. I hope that your daughter remains clear. You must be an inspiration to her. I sense that you are an individual that has given your children the skills to cope with life. At the moment l'm at the early stages of us trying to work out the best treatment. Had hospital appt today. Lots of blood transfusions over last few months. Currently total body scan & bone biopsy next week. If the markers remain the same will probably be prescribed my previous chemo with add ons. It's a wait & see scenario regarding long term treatment. They are focussing on pain management until they have a more informative plan. Been prescribed codeine & morphine. Interestingly my last scan showed l have a healing rib fracture. I have had a few falls, but sometimes all pain just becomes pain and l didn't separate it from everything else. After tests next week, next appt 19th Jan when they should have received all the results and we can move forward. I agree a positive attitude is the only route to take.

  • Hi Phoenix  I do hope that your appt went well. My daughter  is  just  like me she is getting on with it , also she goes for regular checkups. It is hard for them being young. I don't  understand  why there are so many youngsters with cancer. Your  cancer treatment is it tablet form or iv? Have you had radiotherapy at all. I did ask about it,  but they said it was not in one place only its  in a few places. I will keep trying. With regard to your pain have they offered to refer you to the pain clinic that is my next move. How is your walking and balance? I don't  walk very far and my balance is not so good. I have now purchased a walking stick unbelievable,  in the last 8 months everything  seems to have happened. . I have fallen down many times we just have to be careful Waiting for results of tests is a nightmare, but you can't change the results so I try to put it out of my mind. I find it so strange  how many people  especially  young  one have cancer. It must have something  to do with what we eat. I have started  to change my diet. Less sugar or totally  cut out completely.       

  • Hi Phoenix did you receive  my last message?

  • Hi Marybernadette, It really is a blessing communicating with you. I am in agreement with you, l do think it has been all the foods changes etc that has led to a lot more younger people being diagnosed. The same with autism etc. My treatment has been a combination of oral tabs & iv. I've had radiotherapy previously but not recently. I  haven't been referred to pain clinic, thank you for the heads up l will pursue that. Regarding my balance wow, not good one of my things was going to the local sainsburys weekly & getting a bunch of flowers (l love flowersSmile). A few months ago it was a truly horrendous & scary experience. It's interesting how people can see you in distress & just walk on by. I am really cautious now having fallen outside & indoors. I hope you got a really pretty walking stick, there are some quite decorative ones out there. Thinking l may need one soon! The waiting is what can really mess with your brain. I know it's in my spine. The questions is how further has it spread? It feels like strange territory. I've been here before but not quite like this. Before l was making decisions based on research etc ( l'm that person that doesn't buy a kettle without research!). But for some reason l feel all at sea with this. I am putting into the universe a better year for both of us!