Lobular breast cancer just diagnosed

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  • arpie
    arpie Member Posts: 7,801
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    I hope the massage helped @Cindi - your specialist tomorrow should point you to a lymphodema specialist too, to take you thru all the different massage techniques, too, as an active part of your treatment - and you may be able to access massagers thru your Medical Benefits or 'health check' with your GP?

    Do you have a girlfriend or Sister in Law that can go with you as support/extra ears rather than your hubby?  You don't want to have to worry about him cracking jokes or what not ....  My hubby had dementia - so I usually went with my SIL who was wonderful.  Hopefully they can do the driving too & maybe a cuppa & some cake afterwards xx 

    All the best for tomorrow 

    I hope you are going OK @GinGin .... I hope your Onc is keeping on top of your pain symptoms too xx

  • GinGin
    GinGin Member Posts: 146
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    Hi @Cindi
    I have to do chemo every 2 weeks (AC) for 4 times and then I move to weekly taxols (12 of those).
    I have done two of AC and two more to go.it’s been tough. AC chemo is supposedly to be the hardest one. I haven’t had much side effects but today I felt nausea (first time) and I have meds for nausea. My nails were turning slightly grey/ blackish and I am now diligently apply oil (so if you are on the same drugs as I am, please ensure you oil your nails as prevention is better than cure). My hair has starting falling ( but I am not concerned about my hair dropping as it can grow again). With the chemo I am on, cold capping doesn’t help so I am happy to go without cold capping ( less time spent at the centre). My second chemo, the nurse inserted the néedle incorrectly and had to take it out ( I couldn’t control myself and cried on the spot and my hubby was extremely upset with the nurse 😅, dramas that wasn’t needed).

    with the lymphoedema specialist that Arpie mentioned, you can get your GP to prepare a care plan for you and you will get Medicare rebates. It’s works better for me as the Medicare rebates are higher than what my private health insurance pays me. However, it is only 5 rebates. I am still seeing my physio for my cording and after each session, I do feel much better and it has improved. However, with chemo, it’s 2 steps forward and one step back… 

    Please let me know if there’s any other questions 😊. Do you know what your chemo plan looks like?

    @arpie, thank you, I have told my medical oncologist and will tell him again when I see him next week.😊
  • Cindi
    Cindi Member Posts: 137
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    Hello my friends,

    I've come home from my appointment with my cancer surgeon now, and found that : good news, HASN'T traveled to lymph nodes!! :)

    However, bad news:  the cancers were more extensive than thought,5 in the left breast each 3cm,  right long Lobular and main one in right were over 3 cm. He said I have to have double mastectomy's and I probably will have to have to have implants as I don't have any fat on me to spare for using instead of implants, which I'm worried about as he said IF I need radiation after results back from remaining breast tissue it will make the implants hard.

    Sounds like maybe I really should consider having NO breasts?!
    I just don't know.

    Has anyone gone this way?

    I see the plastic surgeon on Monday, so I'll see what he says I guess.

    Got to look on the good side and think how lucky I am that it hadn't spread to lymph nodes :)
    xx
  • Aska
    Aska Member Posts: 73
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    Cindi I have no advice,  but just sending you hugs!
  • arpie
    arpie Member Posts: 7,801
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    @Cindi -GREAT that it hasn't spread to the lymph nodes xx

    Please consider joining both the Reconstruction Private group AND the Flat Chat Private group - even if it means putting off your decisions until after you see the Plastic Surgeon on Monday - so that you can chat with members about both options. 

    If you are 'small framed' - you may well suit going Flat - and many people don't even NOTICE!   I have triathlon buddies who basically have NO boobs anyway, due to their training - so they don't look 'that different' after going 'flat'  ....

    Many women are choosing this flat option (and I know that I would too, if I had to go down that path.)  Having implants means more extensive surgery and healing .... which includes the possibilities of infections & other complications .... whilst having an aesthetic flat closure .... should heal quicker & better.    There is no need to make a rushed decision in this - sadly, you won't be 'added' to the private groups probably til Monday (if you click on 'join' tonight) .... so do your homework, and make an informed decision xx. 

    take care - you'll have a busy weekend thinking of your options xx
  • Cindi
    Cindi Member Posts: 137
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    Thanks Aska. Thanks Arpie, yes I'm so grateful that the lymph nodes were clear.
    I was so amazed when he said this, I'd decided they would be affected.

    I am small framed and very into fitness, so the flat chest may be better for me, especially as I'm not so young anymore, if I was I'd go for the implants I think.
    But will wear bras out of the house , maybe get a prosthesis?

    I'll try to join those groups and see what their experiences have been.

    Try to make a decision.

    I wonder if I'll have to have the anti hormone drugs? probably will.

    xx






  • Cindi
    Cindi Member Posts: 137
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    Hi GinGin,

    I'm so sorry you have to have the chemo, it sounds hard, but you sound very strong, I hope you get through ok. 

    I don't know what I'll have to have after bilateral mastectomy, don't know if he will want me to have chemo or radiation or pills, won't know till after surgery.

    More waiting.

    But the more I think about it the more I think Ill go flat as I'm now 69, so flat is probably less risky for me at my age, so whatever comes after?.... what will be will be, and I'll just have to face that when the time comes.
    XX
  • GinGin
    GinGin Member Posts: 146
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    Hi @Cindi,
    Like you, I just have to take one day at a time. It’s hard as there’re so many side effects which one tries to take preventative measures.
    I couldn’t agree more that waiting is hard. I tried not to think about it when I was waiting for results as well.. now I am doing count down on how many chemo sessions left.. lol.

    I was initially told I may need mastectomy as well. I am 58, and at that time, I decided that I will go flat as well (I don’t like the idea of having more surgery and my hubby supported my decision). You do what makes you feel comfortable and happy. I have met a couple of ladies who went flat and they haven’t regretted their decisions. Take your time to decide. Sending you virtual hugs as I know it’s tough decision.

    xx
    Gin


  • Cindi
    Cindi Member Posts: 137
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    Hi,

    Well  I've decided defiantly on going flat.
    Saw the plastic surgeon today and I don't think I can put my body through it all, my husband came with me and didn't joke around, he supports me in this so that's settled it.

    I think I go in for double mastectomy next Wednesday week, will see my surgeon next Monday and find out more.

    I still have no idea what follow up I'll have? chemo/ radiation? I forgot to ask all that :s

    Anyway, I feel relieved I've made the decision  :)
    x
  • arpie
    arpie Member Posts: 7,801
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    @Cindi .... just making that decision & feeling comfortable with it will allow you to sleep better tonight.

    I am glad hubby was supportive & not jokey xx  The final chemo/rads usually depends on the actual tissue samples tested after the mastectomies .... xx. Sometimes, as most of the flesh has been removed, you may not be required to do one or the other xx.  take care, sleep well tonight xx
  • June1952
    June1952 Member Posts: 1,897
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    You have gone with you gut feeling so that is the right one for you.  Great news that hubby has shown a sensible side !  😉
    All the best for your next appointment and decision.
  • Cindi
    Cindi Member Posts: 137
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    Thanks Arpie and June, it's good to know I have support here, it's really helped me <3
  • arpie
    arpie Member Posts: 7,801
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    All the best when you see your surgeon on Monday @Cindi xx ....  I caught up with a buddy last weekend & she'd had an 'double aesthetic flat closure' some years ago .... and she asked her surgeon for 'no tags or dags' (lumpy bits) and he did an amazing job. 

    She showed me hers (and I showed her mine - but mine was just a lumpectomy!) and now I wish I'd asked for a photo, hers was SO tidy!  

    You can see some pics here (and they also have pics of women who've had tattoos done too, over the scarring):
    https://notputtingonashirt.org/gallery/

    take care xx
  • Cindi
    Cindi Member Posts: 137
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    Wow Arpie, some of those tatoo's looked  good on the women's chests! however don't think I'd go that way.

    I feel it may take a while to get used to looking at myself boobless.

    But I'd rather that than going through what the plastic surgeon explained to me, if I was fatter it'd be easier, but the weight's just dropped off me in the last 6 months. I'm too skinny.

    At yesterday's appointment I asked my surgeon if I'd be having more lymph nodes removed and he said "I don't see why" !! I hope there's no cancer in remaining ones though, so I said to him to "scrape as much out as he can on my chest" and he almost cracked a smile (but not quite) saying "Hmmmm not sure that'd be appropriate, we don't "scrape" ! " he's very hard to drag anything info out of.

    I am quite upset now, as this morning I got a call from my surgeon's secretary early this morning telling me he's sick and having covid testing so my op tomorrow's cancelled :s

    But I wouldn't want him operating while he's not 100%.

    So another week's wait......


  • arpie
    arpie Member Posts: 7,801
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    Oh what a bugger your surgery has been postponed @Cindi xxx. I can fully understand that that will be SO upsetting (I'd be in tears, but have always been a cry baby!) - having to build yourself up for it & then ..... Darn!!  Try & enjoy the next week then - do something SPECIAL with your reprieve xx .....  Take care xxx

    Maybe consider to take some 'before pics'?  I did!! (My brother suggested it!)   I took 'after' ones before the dressings came off & then continued taking 'healing ones' too .....  They don't have to be 'fancy' .... but if you want to do some poses & your better half is good with photos ..... give it a go!! You can delete the funny ones!  ;)   Some people even get professional pics taken - as did Charlotte Tottman .... (BC Psychologist who had a double mastectomy after being diagnosed about the same time as me.)  Check out her podcasts - they are REALLY GOOD!  

    For Series One - start at Episode 13 & continue down, then go to the top for Series 2 xx