Introducing myself

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Hi all

ive recently joined this group , my journey so far has been very quick & intense . I went to my gp early October after not feeling right , my left breast ached, felt very heavy & was very lumpy ( always had lumpy breasts ) but I just knew something wasn’t right . She referred me to the breast clinic & the rest was a whirlwind with a confirmed diagnosis on 16th October , Invasive Lobular cancer . My surgery was on 7th November, lumpectomy & SNLB , I’m currently waiting on my oncotype score to see if I’ll need chemotherapy, radiotherapy & hormone treatment ( my cancer is oestrogen fed) or radiotherapy & hormone treatment . The waiting game is the worst thing !! 

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

    Navigating a cancer journey can be such a stressful and challenging time but getting support from people who have walked or are walking the ‘exact same' journey can help a lot. (I have a completely different cancer).

    This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.

    The Community is actually divided into dedicated Support Groups (Discussion Rooms)........ but I do see that you have already joined our dedicated Breast Cancer Support Group.

    This group is a safe place 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 below…….

             Breast cancer

    ……. then once the group page opens 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.

    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/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 Macmillan 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • "The waiting game is the worst thing !! "

    It really is. And with all that time to think about all the possible scenarios it can lead to a lot of stress. 

  • Dear All, I have joined this group from India. My mother (59 years old as of July 2024) has been recently diagnosed with triple positive breast cancer which has advanced into liver. I am looking forward to learn from the experiences from others. 

    Current treatment - TCHP Protocol (no surgery at this point given the disease has spreaded to liver)

    3 weekly Phesgo (Perjeta + Herceptin) - 3 injections are done. 

    Chemo - Nab Pacletaxil plus Carboplatin - weekly cycles (She is given these drugs in two days and not on the same/signle day). Into her third cycle (each cycle consists of weekly chemos). She was tolerating it fine till 2 cycles but her third cycle had to be pushed by a week due to low hemoglobin/platelets/WBC.

    Her first PET CT full body scan is due on 10th Dec 2024. We are quite anxious. 

    Doctors have said that Hormone therapy will be started once the chemo cycles are done. 

    Is there anyone in the group which is going or has gone through triple positive breast cancer? Request you to please share your experience and if the above treatment is correct or not? Or if the admins of the group can please direct me to the right forum/post?

    Thanks

  • Hi  abd a warm welcome to you but sorry to hear a put your mum.

    As I said is my early reply the Community had dedicated cancer specific support group so you can I recommend that you join and put up your post in our dedicated……

       Triple negative breast cancer

       Liver, secondary cancer

    ……. support groups where you will connect with others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.

    As for the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our……

         Carers only

    ……. support group where you will connect with a wide range of members navigating the exact same support challenges.

    Do get back to me if you need further help.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks a lot. I think I should start a new discussion on Tripple Positive Breast Cancer (not the Tripple Negative Breast Cancer - TNBC) as I could not find any discussion on that in this community. 

  • Hi again  sorry I misread your post as I have never seen Triple Positive BC mentioned before so my brain went straight to Negative.

    I see that there is no group for Triple Positive BC so I would suggest that you still join the Triple negative breast cancer group and put up a post as you never know who my be in the group based on the same reason you find yourself here.

    You may also want to join and post in our general Breast cancer support group as well.

    I am no expert but the only ‘Positive’ I seen mentioned in our various BC groups is BRCA Positive

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi. I've been diagnosed with lobular breast cancer 2 weeks ago. I've had mri, biopsies and waiting on biopsy results for lymphoma.  The waiting is agony. I have another mammogram next week with the dye in and I'm just praying for a good outcome.  Was hoping to have surgery before Xmas but I'm not seeing the surgeon till 18th so not sure if will happen. I have no symptoms at all and it was only cos my routine screening picked up an abnormality.  It's been a huge shock to all the family.

  • Yes it is a big shock when you hear those words , yes it’s cancer !! My screening end of may didn’t show anything , it was only not feeling quite right that I went to my GP who agreed that I knew my body best & referred me to the breast unit , they did an ultrasound that didn’t show anything either but thankfully they did a biopsy based on my knowing something wasn’t right !! And so my journey began !! Wishing you all the best with your forthcoming journey & for the best possible outcomes along the way . Big hugs Sparkling heart

  • Thank you. They said it was 18mm but now I'm thinking all sorts, has it spread, is it anywhere else etc. I'm hoping to find out more next Tues after another mammogram with dye in. I'm struggling cos the worst health problem I've ever had is a tooth out! Do they usually tell you straight away how bad it is? I still feel perfectly well though apart from the anxiety.