New diagnosis, have had mastectomy

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Comments

  • Shellbelle_75Shellbelle_75 Member Posts: 65
    Hi @Suzi_S61 your words in your post certainly struck a cord with me in being able to relate to your feelings and your physical description as well as that’s where I am at also 
  • Shellbelle_75Shellbelle_75 Member Posts: 65
    @Suzi_S61 re your comment I also have been told reconstructive surgery is not on option for 18 months to 2 yrs re my diagnosis 
    I found this to be a big shock as I thought it would be about 6 months....
  • TeePeeTeePee PerthMember Posts: 31
    @Suzi_S61 @Shellbelle_75 I haven't been told anything about recon at all.
  • Suzi_S61Suzi_S61 Member Posts: 68
    @Shellbelle_75 glad we are here sharing this together albeit not the best circumstances. I agree I was pretty disappointed that recon wasn't an option for quite a while. The Specialist did say because of the type of cancer and the risk of it returning in my right breast he wanted to make sure I am completely healed and well before doing recom. He also said you only get one tummy tuck so might as well make sure we use it for the best advantage and if the right breast needs to come off at a later date we should sort that first. It left me with a bit to think about but I believe he is right and I just have to put up with things for now. 18 months goes very fast.i just want to get through the next 6 months first.
  • Shellbelle_75Shellbelle_75 Member Posts: 65
    @Suzi_S61 totally get what your saying I have been told the same info and it makes sense just seems right now to be a long time,your right I also just want to get threw the next 6 months x
  • Suzi_S61Suzi_S61 Member Posts: 68
    I had my visit to the oncologist today. My brain is fried. I wasn't feeling particularly good this morning. The last 2 days I have been feeling a little nausea. Not overwhelming but just there in the background. I have been told I have to stop taking Arimidex before commencing chemo. Then start when I finish treatment. I am to have 6 cycles. 3 on FEC and 3 on Doxytaxel. He mentioned having the Doxy weekly at a lower dose which reduces side effects. So I start on 10th October and finish 23rd Jan I believe. Does anyone have any info about FEC and Doxy. Symptoms or advice please. The oncologist told me nausea, aches and pains in joints. I am glad I had the breast nurse there cos my partner and I got hit with dates appointments and info, afterwards I couldn't remember half of it. Why did my brain have to be so foggy today of all days. I asked him if this was the best chemo for what I have and he said No tongue in cheek. I know it was a bit of a stupid question but I meant as far as the other types. He said he didn't know which one was better thats why they will change it half way through. Somewhere in the process my brain forgot to tell me he had explained that already. I felt a bit foolish. I am having my port put in next Wednesday. Here's to the beginning. 
  • TeePeeTeePee PerthMember Posts: 31
    My brain was fried after oncologist appt too, though I already had a migraine and was vomiting!
    Dont feel foolish, it's your treatment so ask as many questions as you need to to be able to understand. It's such a shock combined with a lot of new medical information - it's a lot to digest. The news usually hits me hard but I usually wake up the next day and get on with it. Hopefully you'll feel better about it all tomorrow. Bring on 10 October I say!!
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,175
    Hello @Suzi_S61
    I agree with TeePee, dont feel foolish, its so much information to take in and is like information overload!
    Great that you had your partner with you and that the BCN was able to assist with all the follow up dates etc.
    A notebook is a great idea to take notes if you have to, taking someone with you and asking whatever questions your need to that will help you process.  Take care of yourself and wishing you all the best with your upcoming treatment.  Also, dont hesitate to call our helpline on 1800 500 258 if you need to chat with any of our cancer nurses.
  • TeePeeTeePee PerthMember Posts: 31
    Spiv1803 said:
    Wow @TeePee, I'm just about one year ahead of you  
    Very similar diagnosis, and I'm in Perth too. Message me any time 
    Hi @Spiv1803, sorry I missed this, would love to hear how you are going! I think we might be on. Perth FB page together?
  • onemargieonemargie queenslandMember Posts: 1,240
    Hi there @TeePee you have the same diagnosis as I did but I didn’t have any lymph node involvement and my scans were all clear.  there’s been a few more of us TNBC gals popping up since I was diagnosed may 2016 aged 43. I had a left side mastectomy no recon yet and took the other boob off too as a preventative. My choice as my guts told me too. But don’t think at all this is what you should do. It was just the right decision for me as I had lumpy cysty boobs and didn’t want to be always stressing about the other side. I had dose dense chemo too 4 rounds of AC and 4 of paclitaxol 2 weeks apart. I also was tested for the gene as I was under 50 with no family history. I was negative for it. So I didn’t need my ovaries removed. Id already had a previous hysterectomy. 

    My best advice for you is. Everyone has a bloody opinion about how they “think you are going to feel” , many of them haven’t had bc and really wouldn’t know, take advice from your team and the crew on this forum. Try not to google anything either. Everyone one is different with chemo,  for me it was shitty but doable. I still managed to run a household and get shit done I just rested in between. I didn’t work during chemo as I’m a nurse and would of caught something no doubt that would of delayed treatment but some of the crew on here have it just depends. 

    Listen to your body, delegate if needed, yes it is all about you for the next few months, take help if family and friends offer, whether it’s cooking some meals or helping with the kids or even financially, you have to learn quick smart it’s OK to accept help if you need it, you will soon find out who your true friends are.

    People don’t offer to help if they don’t want to believe me! I had ones that stepped up that I never expected too, and on the other hand had a friend of over 30 years who didn’t even text to see how I was going at all. 

    It’s hard for those around you to watch you going through chemo that’s true but they will all adjust to your treatment plan and you will get there in the end, it is doable and treatable and TNBC responds really well to chemo too. Big hug. Margie x
  • TeePeeTeePee PerthMember Posts: 31
    Thanks @Onemargie, I've read some of your other posts and noticed that our diagnosis are similar, other than node involvement.

    I'm almost 4 weeks post surgery for right mastectomy. It's still quite sore (not sure if that's normal) but am getting some physio tomorrow so hopefully that will help. The thought of recon scares me a bit but in my head im thinking I'll take the left one off as well at the same time. I'm a single Mum to 9, 11 and 16 year olds and I don't want to always be wondering and scared.

    I've already had several people tell me how I should be thinking or feeling and it has pissed me off a bit. I'd like to think I am fairly resilient and strong - my second child was still born and then I had a cheating husband and a messy, nasty divorce - I survived that and I can survive this, and I don't need people to tell me how to feel or act because they have a friend if a friend of a friend who had breast cancer.

    My past experience losing my son cleared out all of those friends that couldn't cope with unpleasantness so I am lucky that I am surrounded by supportive friends and family. Having said that - I have no parents - my Mum died 4 years ago from early onset Alzheimers - and no partner means that I do feel incredibly alone through this, but this forum has been very helpful.

    I start 4 rounds of AC dose dense chemo in 15 Oct. Not sure about the 2nd part but seems most on here have 12 weeks of paclitaxol if they have node involvement.

    I have got lots of comfort from reading your posts on here and hope that I can offer the same comfort to others here in years to come.
  • kmakmkmakm MelbourneMember Posts: 7,530
    @TeePee My heart breaks for what you've been through. And I'm in awe of your resilience. You're amazing.

    Pay no mind to the nonsense people say. It's bullshit. Apart from the rare exception, it's only the people who've gone through this, or a similar trauma who 'get it'. You're not alone here. We've got you. K xox
  • Suzi_S61Suzi_S61 Member Posts: 68
    @Shellbelle_75 hi just wondering how you are getting on?. 
    Hope things are going smoothly for you at the moment. 
    Take care xx
  • Shellbelle_75Shellbelle_75 Member Posts: 65
    @TeePee sending you love and healing and a shit load of understanding from one very resilient sole parent mumma to another x
    Hey @Suzi_S61 Thankyou for your kindness in checking in on me :) 
    some good news yesterday after 23 nodes removed only one had a very tiny .2mm cancerous cell in it all others where clear. I meet with the radiologist Thursday and oncologist Monday re treatment which I am glad about but also very nervous..... 
    the surgeon I saw on Monday was my surgeons business partner but he is away currently 
    she was lovely but not convinced the what was previously deemed a .8mm swollen lymph node in the remaining breast is just that.She had requested another breast ultrasound in two months and core biopsy as a second opinion,this worries me but I understand she is being very proactive and cautious 
    @TeePee I am seeing a Physio on Friday as I am only two weeks post surgery but I have a lot of pain from the auxiliary node clearance and they think odema so I am totally hearing you on that one my friend.
    so the journey continues..... kindness helps from those who understand Thankyou ladies xx
  • Suzi_S61Suzi_S61 Member Posts: 68
    @Shellbelle_75 that sounds very positive about the nodes. It's understandable they want to be cautious and good too. It's better if they are thorough. Don't worry about the oncologist appointment. If you can ask the breast nurse to go with you they are great because they understand whats being said they link you in with whatever is necessary and give you heaps of support. How have you been going with your arm exercises or is it too painful?. I was told the exercises help enormously with the fluid but you may have a seroma?. I had mine drai b ed 3 times in 3 weeks. It doesn't hurt but feels so much better afterwards. Just a wild guess no gp here lol.  Hope the physio helps. Stretching exercises but stop if there is pain. Take care xx
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