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riehrieh Posts: 9

Hi all

I was diagnosed with breast cancer (triple negative) in October 2019, to say it was a shock is an understatement as I had had a mammogram only 4 months prior that showed no evidence of breast cancer. Initially I was told it was treatable albeit advanced however following a CT scan I was advised the cancer had spread to multiple lymph nodes in my chest and neck, no spread to any other major organ but they staged it as a stage 4 and my only option was palliative chemotherapy, I am only 57 and this is not the news I wanted (I know none of us want this news). I am now on cycle 4 of 6 cycles of chemo. I am due to start docetaxol this week providing my neutrophils pick up sufficiently, having read all the information about this drug I am rather nervous about all the side effects, have any other members had this drug that are able to share their experience? I have also had neutropenia after every cycle so far. They started me on GCSF injections prior to this cycle which has helped but not enough at this point, I am going back for a rebleed today in the hope I have reached the cutoff otherwise this cycle will be deferred too. Has anyone else had this diagnosis that could offer me any hope as my oncologist gave me a prognosis of 1-2 years? I am devastated. My first progress scan showed a reduction in the size of all the affected lymph nodes but I'm having difficulty convincing myself this is a good thing as I don't want to get my hopes up only to have them dashed again. I am trying to stay positive as I'm a firm believer it helps but it is becoming increasingly difficult given the prognosis I was given. I so don't want my life to be cut this short as I have too much to live for particularly my daughter getting married next year and grandchildren in the not too distant future. I am getting lots of support from family and friends and could seriously not have got this far without them, I am however a little disappointed with the support from the hospital, I'm not sure if I was expecting too much from them but I do feel quite brushed off. Any positive information anyone can provide would be appreciated.

Comments

  • SunshinedaffSunshinedaff Posts: 1,286 ✭✭✭✭✭

    @rieh

    Hi, good morning to you.

    I am so sorry to hear about your diagnosis, I can understand how shocked you must be feeling. It is so devastating.

    It is great you have support from your friends and family, I would also suggest you contact the Macmillan Cancer Support group in your area, as they may be able to help you in other ways where your family and the hospital can't. I know many people find their support invaluable. I think sometimes the hospitals are so focused on the physical aspects, which is what we want actually, but the other factors involved in a cancer diagnosis can fall by the wayside. The emotional and mental impact the diagnosis and any treatment has on us is enormous, sometimes it can take months before it filters through and we are able to process any of it. You must feel as if you are in the middle of a whirlwind. I would also ask your medical team about any possible trials that you may be eligible to be considered for?

    I just want to encourage you by saying that although the doctors may have given you a prognosis, it isn't an end date, there are many, many people who have been given such prognosis and are going way beyond their expectations, defying the prognosis and cancer. There are some really inspiring, encouraging stories from some of these people. I encourage you to read the positive stories, of those who refuse to give in to a prognosis and are determined to continue living each and every day.

    Lucie O'Donnell author of Cancer is my Teacher, she did a Q&A here, the thread is closed but the posts are still available to read, I will put the link below.

    https://community.livebetterwith.com/cancer/discussion/137/i-am-lucy-odonnell-author-of-cancer-is-my-teacher-ask-me-anything/p1 (hope the link works!)

    Many of our members here in the community are also in this group of people. You do indeed have so much to live for, looking forward to events like weddings, holidays, etc, can provide some strength to keep going through the tough treatments you are having to endure. I can understand how difficult it is to remain positive, and it is completely understandable that some days are very dark and just getting through the day takes everything you've got. It is great you found the site, the community is a lovely friendly group, and you will find a lot of support and understanding here. We also have Karin Sieger, @KarinSieger , who is a Cancer specialist counsellor in the community.

    As for the Docetaxol, I had this as part of the FECT-T chemotherapy treatment I had when I was diagnosed with breast cancer. It is a tough part of the chemo treatment, I too had GCSF injections after each round. I am sorry to hear the chemo has caused you to be neutropenic so far. How did the bloods go on Tuesday, has your blood count improved?

    Hope to chat to you soon,

    Lou x

  • riehrieh Posts: 9

    Hi Lou

    Thank you for your reply, my bloods on Tuesday just scraped in within therapeutic limits so I had chemo cycle as planned yesterday. The hospital has advised me in future to go for bloods a day later than normal as I seem to need that extra day for the neutrophils to pick up sufficiently which I'm pleased about as it saves an extra trip to the hospital and one less blood test. Feeling really good today which I wasn't expecting but I've come to accept that I can feel great one day and not another - just another joy of the cancer journey.

    Initially the prognosis did floor me and it took me a while to deal with it however after a week or so and long chats with my husband and daughter I decided to take it as a challenge, I will do everything in my power to be around a lot longer than they initially told me. I really wanted to hear from other who have triple negative and have done well to give me that extra boost as everything I read online about it says prognosis isn't great and I'm sure there must be people who do longer than the short term prognosis. I was referred to a psychologist when I was diagnosed in October as I wasn't coping with the diagnosis and what the future held, I became very withdrawn (which isn't me normally) and couldn't talk about it without ending up in floods of tears, this has passed now thankfully and I'm finding it much easier to discuss. I received a call a week ago to tell me I should get an appointment around April this year - I joked with my daughter it was a good job I was coping better and not suicidal...

    Thank you for the suggestions above I will certainly check them out, the more information we have I believe is power.

    Rie

  • rickydrickyd Posts: 19 ✭✭

    Hi Rieh,

    I, too, had problems with my Neutrophil Count. After my 2nd cycle of Docetaxel I got some sort of infection and ended up in hospital for 3 days with Neutropenic Sepsis. As a result, I was then put on FILGRASTIM which I had to self inject for 10 days after each session of chemo. This apparently stimulates the bone marrow to produce white blood cells quickly. I must say, self injection was no problem and it seemed to do the trick as I had no more problems after that.

    If you are concerned about your Neutrophil count, it might be an idea to ask your Oncologist if Filgrastim might be an option for you.

    Sorry to hear you are having problems accepting what is happening to you. It is a hell of a shock when you first find out and it is difficult to accept. But you are a lot stronger than you think and you can deal with this. Just believe in yourself and your family around you.

    I have stage 4 and deal with it by trying to maintain a positive state of mind. I thought about it long and hard and came to this conclusion.

    Cancer is just a word - it does not define you.

    I really hope any of this helps.

    Take care

    Rick

  • riehrieh Posts: 9

    Hi Rick

    thank you for your reply, sorry it's taken me a while to respond I have been quite unwell post chemo, the side effects hit me like a ton of bricks and lasted for about 10 days. I'm feeling much better now thankfully.

    I have been having the Filgrastim since cycle 2 due to the neutropenia, it has helped however it appears that I am still slow at getting to therapeutic levels hence why they advised that I go for pre chemo bloods a day later than normal.

    I think it was truly the realisation that my prognosis was so poor at the beginning and no one at the time could give me any hope, I have in the last couple of weeks received emails from other ladies who have the same type of breast cancer and who too were given a bleak outlook, who have advised that they are several years down the track despite the initial prognosis. This has given me the additional boost I needed to continue fighting as I now know it is possible to surpass what I was told. My family have been amazing throughout and constantly remind me that I am strong enough to beat this demon and I do believe I can just sometimes it all gets a bit overwhelming and I have a wobble about the future and what it holds.

    Thank you for your support

    Rie

  • riehrieh Posts: 9

    Hi all

    Thought I would provide an update on my progress, I haven't been to the site for some weeks now as the last three cycles of chemo (Docetaxol) really knocked me for six, I seriously could have given up, the side effects were hideous. I do want to thank you all for your support with your responses, I was at a very dark point in my cancer journey when I wrote my original post.

    However, I am now 7 weeks post my last cycle and feeling much better in myself. During the time I have been away things have changed dramatically, the chemo as hideous as it was has had an excellent effect on the cancer to the point that following my last staging scan I was advised that the tumours and lymph nodes had shrunk so much that surgery was now an option (I was told at diagnosis this would never be an option and treatment was merely palliative due to the spread of disease), so 2 weeks ago I underwent a mastectomy and axillary node clearance. I'm not sure at this point whether I will have to have radiotherapy to the remaining nodes in my chest and neck until I speak with my oncologist again in a couple of weeks. I am beyond ecstatic with the response, not sure if it will change the overall prognosis but I am taking it as a very positive sign that I may now have a much less bleak outlook, given the NHS have used valuable resources to undertake surgery on me particularly during this unprecedented time we find ourselves in.

    thank you again for your support

    Rie x

  • LizzyB73LizzyB73 Posts: 112 Oncology Specialist Nurse

    @rieh

    Hi Rie

    I am so glad that you are feeling much better after your docetaxel and how fantastic that the cancer shrunk sufficiently that you were able to have a mastectomy and node clearance.

    This is just testament that what can start out as very bleak picture can change and the bosy does amazing things and kicks itself into action when you need it to.

    sending my best wishes for your recovery and wish you well


    Take care


    LIz


    😍

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • RobertARobertA Posts: 1,175 mod

    @rieh

    Hi Rie

    What a relief that you managed to cope with the dreadful side effects you suffered from your chemo treatments. It is wonderful to hear that it was all worth it and that you have been able to undergo appropriate surgery.

    It does sound like a really positive sign and I hope that you will feel able to keep in touch and let us know how you get on going forward.

    Rob x

  • SunshinedaffSunshinedaff Posts: 1,286 ✭✭✭✭✭

    @rieh

    Hi Rie,

    It is so lovely to hear from you again.

    Thank you so much for updating us with your news. I am so glad the chemo has been effective allowing you to have the operation afterall. I know Docetaxel is a fiend to contend with. It is very tough. But it is so good to hear you have come through it. I hope you are recovering well from surgery, wishing you the very best in future days.

    Please keep in touch, we are all routing for you, here anytime you feel like a chat.

    🤗🤗

    Lou xx

  • riehrieh Posts: 9

    Hi Lou

    Thank you, it is good to be out the other side of chemo. I think I have struggled more with my psychological health which I feel made the chemo side effects feel twice as bad. Even though I have had lots of support from family and friends I felt so alone, I have recently started sessions with the psychologist and that combined with the good result from the progress scans has improved my mental health considerably, I now feel like I am coming out of a heavy fog and the outlook is much brighter. The surgery went well and I believe I am recovering well, minimal pain apart from the nerve irritation (which I believe is a by product of the axillary clearance) it is rather bothersome but a small price to pay as I'll take that over not being able to have surgery at all. The biggest thing I am struggling with recovery wise is not being able to do much, I have been tempted as I feel so well but I don't want to set back my long term recovery so I'm trying to be good lol although it is amazing how you can adapt doing things so that technically it fits in with what I've been told I can and can't do.....

    thank you all again for the support it is appreciated

    Rie x

  • SunshinedaffSunshinedaff Posts: 1,286 ✭✭✭✭✭

    @rieh

    Hi Rie,

    It is completely understandable you have felt this way, I am so glad you have been able to get some professional support to help you get through this, and now hopefully in a more positive way. The mental and emotional fallout of a cancer diagnosis is often huge, and also quite often overlooked when we are concentrating on the physical aspects we are dealing with. It can hit us later on down the road. You are definitely not alone in finding yourself in this way. You are always welcome to contact Karin , @KarinSieger . Karin has a lot of understanding in this area, and is available in the community for anyone.

    I know at this time when you are recovering it can be frustrating when we want to do more than we ought! Carry on taking it easy, taking care, to maximise your recovery progress.

    Have a good evening,

    🤗🤗

    Lou xx

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