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Why are treatment options so limited for inflammatory breast cancer & poor patient journey

samroz3
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I have to say that I am very disappointed that the treatment options for inflammatory breast cancer are so limited.  I am lucky I am stage 3 and not stage 4 but the options are chemo, radiotherapy and surgery - full masectomy.  I got told that HIFU treatment, T cell treatment and other treatments are too experimental and not offered by my treatment team, it seems HIFU is only available for prostate cancer.  I am looking into whether histotripsy treatment is available for breast cancer as I am trying to avoid surgery at all costs but I am guessing the answer is going to be no.  Additionally, if the chemo kills the cancer why is surgery necessary?

I am also informed by a support team that breast implants aren't an option for reconstruction for this type of cancer and only reconstructive flaps from my own skin from somewhere.  I have been told to take one step at a time by the surgery team and go through chemo first I am on round 2, so far from round 1 stomach cramps, acid reflux, diarrhea, some hair strand loss, nose bleeds and scabbing but not too bad, on the second round I went into anaphlatix shock and had to be given antihistamines my chest/heart area still feels a bit weird, but in the first round I felt ok the first few days after chemo then start to get symptoms around day 3 and 4.

I have to say the patient journey so far has been poor, since my diagnosis no one called to ask how I was, there was no offer of anyone else to support me like a buddy, and I didn't get a call after chemo until 2 days before my next chemo, and to email the hospital several time to get a referral to the inflammatory breast clinic in Birmingham, The attitude from some of the people on the phone at the hospital was less then empathic and I had to say to them I am the patient etc. I am lucky I am assertive and taking this in my stride and have a supportive partner but would struggle if I didn't have him to take me to appointments and at home for support so much for having a cancer nurse.  I had to call and push for appointments pre the chemo being arranged.  Being told not to jump ahead re my questions about surgery is the most frustrating, I want to know what the options will be, what they will look like so I can start to adjust and prepare myself, yes I get it the chemo might not work and might change the options but if I can visualise in advance it will be less shocking for me when I go through surgery, so being told not to jump ahead and take one thing at the time is annoying and totally patronising.

If anyone knows if there are any trials or other treatments other than the usual please can you let me know where I can access them, also is anyone getting private treatment as it would be interesting to find out the differences in approaches etc.  Additionally, if there are any before and after photos on the net for reconstructive surgery for inflammatory breast cancer then please let me know.

If anyone else has inflammatory breast cancer or has gone through it, it would be nice to chat and have a buddy for support.

Thanks, 

Rose 

  • Hi Rose and thank you for posting, I am sorry to learn of your situation and that your experience as a patient has been poor. This must be very difficult.

    Surgery is usually the main treatment for most breast cancers, including inflammatory breast cancer. Because inflammatory breast cancer can develop quickly chemotherapy is given first to shrink the cancer and is known as neo-adjuvant treatment, surgery is done to make sure all the cancer has been removed, to reduce the risk of the cancer coming back.

    Unfortunately, it looks like histotripsy so far for breast cancer has been looked at in early studies on animals, and human cell specimens in the laboratory and therefore is in the early stages of research and so unfortunately is not available as a treatment in the UK. The difficulty is in the UK it can take a long time from the pre-clinical studies in the laboratory, before clinical trials, and before it is available as a treatment. I realise this is frustrating to read.

    The difficulty with inflammatory breast cancer is that it is more rare and so there are fewer trials specifically for inflammatory breast cancer than for more common types of breast cancer. This is because it is difficult to organise and run trials for rare cancers. For example, it can take a long time to recruit the number of people needed.

    You may have seen this already, we have a list of trials that we have been permitted to put on our website. Although our details are given we are not directly involved in the trial or the recruiting of patients to trials this is done by the nurses and doctors at the hospitals who run the trials.

    It is also worth looking at Clincialtrials.gov which lists trials that are taking place worldwide including in the UK.

    Sometimes in rare situations, it can be helpful to ask for a second opinion. I appreciate you are going through treatment but it might be something to think about and discuss with your breast specialist or GP.

    It sounds like you feel unsupported which I was sorry to learn. Breast Cancer Now offers the service Someone Like Me, where they can match you with a trained volunteer who has been in a similar situation to you which you may find helpful.

    Also, I don't know where you are being treated but if the hospital has a Maggie's Centre it is worth dropping in as they provide a lot of information and support.

    If you have the time and the energy it might be worth contacting the hospital Patient Experience Team, to feedback on what your experience has been like.

    I hope this helps a little. You are also welcome to call our helpline and speak with one of our nurses. We are available between 9 am and 5pm Monday to Friday and the freephone number to call is 0808 800 4040.

    Take care,

    Jemma

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