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

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

Thanks @Sister do I understand it correctly that u didn't take any medication? I would prefer not to, although the Amiltriptyline has a sedative in it, so that is helping me sleep more than the previous 2-3 hours a night. I want to try to put the least amount of medication into my system as I begin 6 months chemo next week. Yes, we r so lucky here at our place as we can see the whales migrate north from end of May and from now, south until early November. Someone asked me if I have been meditating to calm myself since my diagnosis but I said I just watch the whales!

@Josephine66 thanks, yes I guess it is all a steep learning curve. This is my third day of feeling a bit like my old self and we r going out for a picnic by the river. Hope u too r feeling better and your skin has healed. I am still looking forward to meeting up next month and will send u a text message towards the end of next week

@Doodoo, yes, it must b a weird feeling, but I am sure once u get out of that chair for the last time u will feel euphoric! I was even a bit dizzy with happiness when I had my first "good" day on Saturday! Oh how the little things in life we took for granted matter so much and other things like whether I have makeup on when someone visits, don't matter at all! I'll b thinking of u next Tuesday. Xx

@onemargie are you up that way can you give Sirrah any help with support groups in the area.

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

47 Replies

Sirrah
Member
7 years ago
@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!!
onemargie
Member
7 years ago
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
primek
Member
7 years ago
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
primek
Member
7 years ago
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..
Sirrah
Member
7 years ago
Thanks@primek
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?
primek
Member
7 years ago
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-barr%C3%A9-syndrome-acute-inflammatory-demyelinating-polyneuropathy/article/600035/

I hope all goes smoothly with your treatment. Kath x
SoldierCrab
Member
7 years ago
@onemargie
are you up that way can you give Sirrah any help with support groups in the area.

Forum Discussion

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

47 Replies

Recent Discussions

2nd operation DCIS

3rd Op.

Covid jab

Triple positive invasive lobular carcinoma

Triple Positive HER2+

Disclaimer:

Foundation partner	Major partners