Timing

Hi, I hope this is ok to post.

Its not me going through IBC its my best friend. She is also BRCA2 so has to have the double mastectomy and later down the line a hysterectomy. She is 35 years old, we are completely crushed at what she is going through but trying to stay as strong as we can.

She was diagnosed in May, has had her last chemo 10th Nov, and had her picc line removed, which is really good news. This week she is really bad, but she has been all the way through, we do what we can to get her by as comfortable as possible.

As I said her last chemo was Nov 10th her scan is scheduled for 21st in the afternoon, but she doesnt have a hospital appointment with the plastics team until 6th Dec, this isnt even penned for surgery just an appointment. Can I ask if this timing seems right to you? 

She has been having chemo every 3 weeks. That to me seems an awful long time in between. I am just unsure. I can only think they know what they are doing but even she is really worried about the timing of it all.

Can you advise please 

  • Hello Jue6,

    Thanks for getting in touch. My name is Megan, I’m one of the Cancer Information Nurses on the Macmillan Support Line.

    Welcome to the online community. I can see that you have joined the Breast cancer, Friends and Family and Inflammatory breast cancer forums; I hope you have found these communities warm and supportive.

    We were extremely sad to hear about your friends Inflammatory breast cancer diagnosis and at such a young age. As you say this news completely crushed you both, but it sounds like you are being a wonderful support to her. I do hope you are also receiving support during this time.

    With Inflammatory breast cancer, it is common to start chemotherapy first prior to surgery, this is called neo-adjuvant treatment. Usually, a person will firstly be given 3 to 4 cycles of chemotherapy drugs called anthracyclines. Then followed by 3 to 4 cycles of another chemotherapy drug called taxane. Most cycles are between 1 to 3 weeks.

    As you mention your best friend was diagnosed in May and was having chemotherapy every 3 weeks with the last one given 10th November.

    Allowing for a couple of weeks, this roughly equates to being able to have up to 8 cycles of treatment within this time frame which based on the above information is what we would expect, and I hope this is reassuring to hear.

    As I am sure you have witnessed being on such aggressive treatment over such a long period of time can be very wearisome both physically and emotionally, and sometimes the safest thing to do is to allow some time for the body to recover in readiness for the next phase of treatment, which in this case is surgery.

    After every chemotherapy infusion the risk of getting an infection is much greater between 7-14 days because of the lowered immunity and so it seems her clinical team may have arranged for a scan at a time (November 21st) when she is less likely to be at such great risk.

    It is common after a scan to then wait for the results to be interpreted by a trained radiographer and in some cases discussed at a multidisciplinary team (MDT) meeting. It can vary but usually this turnaround time is between 2 to 4 weeks. Again, it sounds as though the clinical team has arranged a follow up appointment December 6th which will allow for this amount of time.

    Having said this as we do not have access to NHS records or systems, it is hard for us to offer reason on behalf of the clinical team. I would suggest if you feel your friend needs reassurance that it is ok to wait this length of time between finishing chemotherapy and having surgery, you might feel able to encourage her to speak to her breast cancer clinical nurse specialist (sometimes called a Macmillan nurse) to help her understand and get the reassurance and support she may need?

    It is very hard to see a dear friend go through such a tough time, and she is likely to be feeling physically fatigued after having had treatment and worried about the future. She is most welcome to speak to one of our counsellors about her feelings.

    You may both also find it useful to explore Breast Cancer Now and their service Someone Like Me for additional support and advice.

    I hope this information is useful. Please don’t hesitate to get back in contact by email, webchat or phone, if you need further information or support.

    The Macmillan Support Line offers practical, clinical, financial and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.

     

    Best wishes, Megan

    Cancer Information Nurse Specialist 

     

    Ref MD/HK

  • Hi Megan,

    Thank you so much for your reply, I appreciate it.

    It's basically as I thought and what I sort of said to my friend, the time scale etc. she was worried about leaving her treatments too long, as you can no doubt understand. 

    I feel a lot better. Yes she has a good support team around her. Me I'll be ok, there's always wine haha.

    I feel more reassured than I was. I am pretty sure they won't do reconstructive surgery, and to be perfectly honest after this alien she has been getting rid of I think the body will need time to heal before anything else is put in there. Well in my opinion and in my terminology. Get her healed first. I've already sent her lots of information on bras that you can use forms in, so we will all get her there. Her mum is a bit of a mess and blames herself lots because of the BRCA2 gene and her carrying it, but I am keeping my eye on her too. Again thank the lord for wine! Haha.

    Again thank you so much for your reply it really has helped me understand a lot more. I will at least have the correct information and not second guessing

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