Forum Discussion
Neck dissection
Hi all,
I was diagnosed with Inflammatory Breast Cancer in Oct 2024 involving the left breast, skin and lymph nodes, I was 46. My cancer is hormone positive, progesterone negative and HER2 positive.
In terms of treatment, I’ve had the following;
- Chemo (Taxol, AC (red devil) and Kadcyla)
- Full cycle of Herceptin
- Left mastectomy and full lymph clearance
- Radiotherapy
- Letrozole for 3mths, changed to Anastrozole almost 6mths now
- Zoledex for 6 mths
- Bilateral Oophorectomy (removal of both ovaries and tubes)
- Zoledronic Acid every 6mths
3 weeks ago I found I lump in my neck and yes after only 13mths of being cancer free my cancer is now metastatic with multiple tumours above my collarbone and neck. We are from Broken Hill so travel to Adelaide for treatments. Since discovering the new tumours, I’ve had the right breast removed and am now back on chemo but different protocol.
I am now stage 4 with no hope of a cure. My breast surgeon advised that surgery would not be an option. The issue that I have is that because 1 of the tumours was already part of the original radiated area from last years treatment, my are not able to provide a meaningful dose of radiation.
Whilst having the discussion with my radiation oncologist, she said “what about surgery?” We had the discussion that surgery wasn’t an option etc however she went on to say, “yes not for a breast cancer surgeons but other surgeons would be able to do these types of surgeries all the time” and she goes on to name types of surgeons that could perform surgeries on the head and neck.
She takes it up with the rest of my team the following day at the weekly MDT meetings and when I had my next meeting with my oncologist he tells me it’s a viable option and that he has referred me to 2 surgeons who are able to perform the surgery. This was last Thursday 27th Aug. I then met with the 2 surgeons last Thursday who went through the whole procedure, explained that although they do this type of surgery (left neck dissection with clearance) it’s not done for Breast Cancer as it’s not often BC spreads to the neck etc. Because of the aggressive nature of Inflammatory Breast Cancer they want to do these types surgery asap to prevent further spread to the head, so I was given a date of early October.
I am very apprehensive about this surgery. I did sign the consent form but I am still in 2 minds. My entire team believe that the surgery will give me the best outcome of prolonging the spread of the disease and made it clear it will not be a cure.
I am interested to see and hear from someone who may have had this procedure or anyone that is going through Inflammatory Breast Cancer itself.
From diagnostic scans to diagnosis to treatment my entire journey has been at an incredible pace once again due to the nature of the aggressiveness of my disease.
I feel overwhelmed and would appreciate hearing from someone in a similar position. Particularly in terms of the recovery and long terms effects of this surgery. I did get this from my team but I think it’s always better to get a lived experience perspective.
Thank you in advance
4 Replies
Golly Gosh, Jo2880IBC You've had a tough time of it & this diagnosis would knock anyone for a six xx I am so glad that you have a very proactive Oncologist & she was able to talk with your team about possible surgery .... it's always mystified me when they basically just say 'stage 4 - no surgery' when the tumours remain 'in situ' .... so well done to your Onc. xx. Keep asking those questions!
I can't help with your question about members have had similar surgery - but we have had a few members with inflammatory BC .... if you go into 'edit' and add 'Inflammatory Breast Cancer' to the title, it may get a response from someone currently dealing with it. You can also put 'Inflammatory Breast Cancer' into the search area (magnifying glass) and some posts should show up. xx
Whilst there isn't a cure for stage 4 .... yet ..... there are new treatments being used all the time - including immunotherapy. Has that treatment been raised/explained yet?
If you find it all a bit stressful, definitely give the helpline a call for a confidential chat on 1800 500 258 (Mon-Fri, 9-5) A problem shared is a problem halved xxBCNA also has links to Charlotte Tottman's Podcasts on Breast Cancer .... she is a specialist BC psychologist who was diagnosed herself over 5 years ago, having double mastectomy and choosing to remain flat. She found that her own experience form diagnosis to completing treatment wasn't really what she'd been 'advising women' over the years .... so her podcasts are from her own lived experience of the whole shebang. She talks very calmly and informatively - and is very easy to listen to - and Raelene Boyle's story is amazing too xx
Take care, and all the best for your upcoming surgery & treatments
Make sure you have a trusted friend/relative with you at all appointments and also consider recording them on your phone as well - as it is almost impossible to remember everything that is said at the time. This way, you can go over it again, in the quiet of home xxHi Jo2880IBC I am not 100% about other members having a neck dissection - hopefully with this chat bumped back up to the top we will get the right eyes over it who can weigh in with their experience. BCNA also has some helpful articles on lymph node surgery (including neck) to help you manage this - hopefully this is helpful for you: https://www.bcna.org.au/resources/surgery-and-breast-reconstruction/lymph-node-and-armpit-axilla-surgery
Please also don't hesitate to call us on the Helpline on 1800 500 258 - though we can't fix everything, we are here to help support you as much as we can through this experience whether that's practical advice or just an understanding ear to listen. 💕
What a huge amount you’ve been through in such a short time. From your initial diagnosis, intensive treatment, major surgeries, having to travel large distances for appointments, and now facing a metastatic diagnosis, it's completely understandable to feel overwhelmed and apprehensive about another significant operation. It's also understandable to be conflicted. Signing a consent form doesn't make the decision emotionally easy, especially when you're weighing up the potential benefits against the recovery and knowing that the goal is management rather than cure. Many people find themselves questioning whether they're making the right choice, even when they trust their medical team. Wishing you strength for the weeks ahead, and I hope some members can share their experiences to help you feel more informed and supported as you make this decision. 💕
Thanks Christina, just wondering have you come across anyone having a neck dissection in your time managing this community by any chance?
