Just diagnosed

Hi Bumbly4.5 and a very warm welcome to the Macmillan Community but so sorry to hear about your diagnosis. 

I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..

     Breast cancer

     Triple negative breast cancer

…….. support groups.

These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community.

Thank you so much for getting back to me so quickly. I feel that it will be helpful being part of a community where people are going through similar treatments, emotions, feelings and can offer support. The first step for me has been joining the community and I am really grateful that you reached out so quickly. Thank you

I am sure that you are going to find the support n the community invaluable ((hugs))

Hi Bumbly4.5 

Welcome to the community. I am sorry you find yourself here. Obviously surgery of the actual tumour is the most important thing for them to find a way of achieving and I hope it’s possible for them to do that even if they can’t sample lymph nodes. It must be so hard to go through this with other health conditions limiting your options. Yes, it can be an aggressive cancer but it doesn’t mean all is lost. Given what happened to your mother, are they going to test you for BRCA1/2 defects? Doing so might open up the possibility of other drugs (PARP inhibitors), should you turn out to have genetic defects.

Thank you for your message. I did ask the Macmillan Nurse who saw us at the hospital if this might happen but she didn't seem to think so. Do you think this is something I should ask about again? I have grandchildren and would like to know if there is a genetic connection. It is quite hard to know what to ask so I am very grateful for your comments and also the fact that if there are BRCA2/2 defects there might be other treatment options. Thank you.

As you can see from my post footer, I have TNBC. I wasn’t offered genetic testing when first diagnosed - there was no sign of it in my family. Later on the protocol changed for those of us who are metastatic and I was tested. I am negative - grateful for that for the sake of my family. But the discussion at the time was that it would make me eligible for PARP inhibitors if I had the defect. I am not sure whether they would be compatible with your health issues, but it’s always worth asking both questions. Your situation of not being able to gave chemo makes you a little different from most.