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Chemo and Guillain Barre Syndrome and r there any groups on Sunshine Coast, Coolum to Noosa Region?

SirrahSirrah Noosa Sunshine CoastMember Posts: 77
edited September 2018 in Newly diagnosed
Hi, I was only diagnosed with Breast cancer on 1 Aug and had a mastectomy plus 2 lymph nodes on 10 Aug with a further op on 16th to remove 15 more lymph nodes.  Was diagnosed with Gr 3 multi focal DCIS, 5 tumours, largest 22mm in a cluster. total area 6 cm. Initially tested as triple negative but retesting shows 20% oestrogen dependent on one tumour and one lymph node. All that after having a negative breast screen exactly 12 months prior!  It has been a frightening whirlwind of appointments, scans, biopsies, operations with the added fun of finding I was allergic to fentanyl and Cyclozine given during surgery.  I am now facing the prospect of 6 mths chemotherapy starting on 13 October which I am not sure how my body is going to respond to as I had Guillain Barre Syndrome when I was 23 and it is a neurological shutdown of the nervous system in response to a virus in the body. Even having the flu shot can trigger it again.   Has anyone else had Guillain Barre before chemotherapy or know of anyone who has? Am not sure if groups of people get together in certain regions? If so are there any groups or individuals who would like to link up on Sunshine Coast, especially Coolum to Noosa region?  I would be grateful for any comments, Sirrah
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Comments

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,360
    @onemargie
     are you up that way can you give Sirrah any help with support groups in the area. 

  • primekprimek Broken HillMember Posts: 5,407
    Absolutely no idea about chemo and GBS but I'm sure the oncologist will only recommend what they believe is safe. I'm gathering positive nodes as unusual for chemo with dcis. 

    My thoughts are the chemo might not be an issue but we are normally given a medication (neulasta) to promote white cell response after round 2 so neutropenia time is shortened. It is that medication they may be cautious with.

    http://chemocare.com/chemotherapy/drug-info/Neulasta.aspx

    Looks like so far no reported issues and its not listed as a caution.

    https://www.ehealthme.com/ds/neulasta/guillain-barre-syndrome/

    They may be cautious with taxane class chemo drugs due to affects on nerves. But please discuss all worries with your oncologist who I'm sure will speak with an appropriate specialist in GBS if there are doubts.

    Looking at this link there isn't any current recommendations.

    https://www.cancertherapyadvisor.com/hospital-medicine/guillain-barré-syndrome-acute-inflammatory-demyelinating-polyneuropathy/article/600035/

    I hope all goes smoothly with your treatment. Kath x
  • SirrahSirrah Noosa Sunshine CoastMember Posts: 77
    [email protected]
    does your statement 'I'm gathering positive nodes as unusual for chemo with DCIS' mean that it is not normally given, only radiation therapy and hormone blocking tablets is the usual treatment?
  • primekprimek Broken HillMember Posts: 5,407
    Sometimes with dcis all that is done is removal and no other treatment. If they are looking at further treatment it may well be considerd IDC not dcis as it has gone beyond the ducts. So then it is treated as other breast cancer is. I think your description fits more with idc...invasive ductal carcinoma...particularly if nodes are involved. It's totally confusing.
    Dcis is classed as stage 0 regardless of size. But I'm no expert..
  • primekprimek Broken HillMember Posts: 5,407
    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/ductal-carcinoma-in-situ/

    https://www.bcna.org.au/understanding-breast-cancer/types-of-breast-cancer/#early

    The links describe the difference .
    It may be they disgnosed dcis initially. But with positive nodes and then further axilliary clearance I think you'll find it is now considered idc. It's common to have a different result after surgery...hence why retested and then chemo being offered etc. 

    It doesn't alter your treatment plan. My Doctor never discussed stages etc with me...just saying it's small but aggressive treatment was offered due to its grade. I think they don't like to get caught up on the stage and grade too much with us as it isn't particularly helpful (for our heads). 

    Do you have copies of your pathology following surgery?

    This link describes the diffetent aspects of understanding a report.

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

  • onemargieonemargie queenslandMember Posts: 1,261
    Hi there @sirrah. I’m bris north so I’m not sure of the support groups on the sunny coast. There would be some up there for sure. I’ve had triple neg 2016. No lymph nodes (8 taken) involved stage 2a grade 3. I had 8 rounds of chemo and @primek is onto it with the info she’s given perhaps there is a support group for GB syndrome or perhaps a specialist in that area could advise you further. .?  Please keep us posted. Biggest hug. Margie xxx
  • SirrahSirrah Noosa Sunshine CoastMember Posts: 77
    @onemargie and @primek I honestly can't believe how wonderful you have both been, so helpful and supportive in my first 24 hours on the network!!  Thanks so much for setting me straight on the difference of IDC and DCIS, which my surgeon was not clear on she just said it was Ductal.  I will certainly take more time to read the references you included @primek, that will be good to have more info I'm sure.  Thanks @onemargie, I know Caboolture etc is often called Sunshine Coast for some purposes but am still hoping to find someone I might be able to have a cuppa with or at least message with who is close to where I live. I don't hold out much hope of a GB group as it is relatively rare and I believe I was the first person in Australia to have it while pregnant with my daughter in 1978.  I would guess and hope that there is no one else in Australia to get GB and Breast Cancer!!
  • primekprimek Broken HillMember Posts: 5,407
    edited September 2018
    @SoldierCrab can you put up your wonderful links to assist also.

    A breast care nurse should be able to help you with support groups in your area. Have you been linked with one of those yet?


  • kmakmkmakm MelbourneMember Posts: 7,973
    edited September 2018
    Hi Sirrah. Welcome to the forum! I'm sorry you find yourself here but I hope you find it as warm and supportive as I have.

    Give this link a try to see if you can find a support group:

    https://cancerqld.org.au/get-support/

    The learning curve at the beginning is vertical eh? You'll soon be across everything but don't hesitate to jump on here anytime you've got a question.

    Hope you've had a good weekend. Big hug, K xox
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,360

    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    Navigating the online community formerly the what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258. BCNA’s helpline will now be open from 9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

     

    How to understand your pathology reports

    https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

  • SisterSister Adelaide Hills, SAMember Posts: 4,938
    Welcome @sirrah Yep! Sometimes the doctors aren't as clear as they should be and sometimes we think we're listening but don't catch everything.  Have you got someone you trust to take to appointments?  It's always useful to have a second pair of ears and not just to hear what is being said - sometimes, someone else will think of a question that you may not have picked up on.  The other thing that I find useful is to keep a record of the side effects of any treatment (I print it out and give it to the doctor) and also jot down questions as I think of them, otherwise I would not remember at the time of the appointment.  As for stages, many doctors don't find it particularly useful - to be honest, I'm still not sure if I'm on the upper range of 2 or the lower range of 3, as diagnosis changed for me after the path report.
  • kmakmkmakm MelbourneMember Posts: 7,973
    Do you think you'll ever ask @Sister? I found the same thing with my doctors, the stage was never mentioned until I asked. They went on about the grade and tissue pathology much more.
  • DeanneDeanne Sunshine Coast QldMember Posts: 2,150
    edited September 2018
    Hello @Sirrah,
    Here is a link to a support group in Noosa.
    https://www.bcna.org.au/services-and-support-groups/support-groups/noosa-district-breast-cancer-support-group/

    I have not attended the group myself but have met the lady who runs it at the BCNA conference last year. I live on the Sunshine Coast and had bc, mastectomy, chemo and radio in 2013. I do not attend any support groups but have found terrific support through the on-line network over the last 5 years or so.

    As the other ladies have suggested, your breast care nurse may have some more support group info.

    So sorry you find yourself in this situation and I wish you all the best with your treatment. Take care. Deanne x


  • onemargieonemargie queenslandMember Posts: 1,261
    I’m happy to chat anytime @Sirrah. Just PM me and ill send you my number. Margie. Xx
  • SirrahSirrah Noosa Sunshine CoastMember Posts: 77
    Thanks @[email protected]@Sister and @primek for all the support.  I am a fairly recently retired Japanese Teacher who was enjoying time with my husband in retirement.  The last couple of days I feel like I have a job again, so many telephone calls, notes to enter into the My Journey notebook and so much to research!!!  I made it crazier by pursuing two different chemo centres, so double the number of appointments with Doctors, oncology nurses and breastcare nurses. Have decided to go with the one that provides the cool cap to see if I can preserve some hair!  Good news today when I was told I will not need radiotherapy. Bad news today newly formed seroma may delay the start of my chemo, maybe that's a good thing, haha.  Thanks so much @Deanne for the local group info which I will investigate tomorrow and also thanks @onemargie I will pm you.
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