Phyllodes tumour: observations

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Posting this for those who may be in my situation in the future.
First comment: on being told I had a malignant Phyllodes tumour in my right breast I was also told it was not breast cancer which made be confused as to whether I actually had cancer or not. I had cancer in the breast but not breast cancer. This is not just about words. It’s about how I was made to feel and also how I was treated.

Second comment. My consultant breast surgeon needed to speak to the sarcoma team at another hospital. This inevitably led to delays in getting back to me with a treatment plan

Third comment. I had a lumpectomy in February but at no stage saw a breast care nurse or had any contact details other than a generic appointment phone number. My consultant has no secretary & without a breast care nurse I had no way of contacting anyone regarding next steps. So after the initial follow up appointment two weeks after surgery I waited a month until I was told I needed another procedure to get wider margins. It was not about waiting for the treatment but about waiting to hear what treatment would be

Final comment: all NHS staff have been wonderful but the admin is woeful. Every one here knows how delays in communication are so stressful. I was not considered to be a breast cancer patient and so no support was offered. This forum has helped as has the extremely helpful Phyllodes Facebook group.
I had my wider local excision today.
To anyone in this situation in the future I would urge you from the outset to ask for contact details for someone who can offer support & help ensure follow up doesn’t fall between two teams

I now wait to hear when and where my radiotherapy will start

Wishing everyone here the very best in their journey.

Irishgirl16 over 1 year ago

Hi, sorry to hear you've had such a difficult experience, that must be so frustrating and thank you for sharing this to support others. Best wishes for your radiotherapy, I hope this starts soon.

LC Clogg 10 months ago

I'm so sorry to hear you have had a tough road to travel with very limited support and my heart goes out to you. I hope by now you have had a more positive experience and the adjuvant element of treatment is well under way.

It's daunting enough to find you have such a rare type of tumour and as such, the follow up treatment from a specialist sarcoma team is absolutely the right place to be.

I wish you well and take heart; I am 2 years down the line from a very similar experience and a much stronger person for it.

Corvo 10 months ago in reply to LC Clogg

Thank you for your empathetic response. I have now had a second procedure to get clear margins and am waiting to find out next steps. This time I was contacted by the breast care team who were extremely helpful and it meant that I didn’t feel so isolated.
Unfortunately, because Phyllodes are so rare and not deemed breast cancer (even though they are in the breast) it’s easy to fall through the cracks, especially when the sarcoma team are in another hospital.

LC Clogg 10 months ago in reply to Corvo

I'm so pleased to hear things are looking more positive for you.

MacMillan is an excellent source of support and information.

SBT 7 days ago in reply to Corvo

Hi Corvo,

I have just been diagnosed with a Phyllodes Tumour in my left breast, I'm currently awaiting surgery scheduled for early May. My experience with my surgeon and the breast care team has been much better than you have experienced. I have no idea yet until it is removed and tested if it's benign, borderline or malignant. Could I ask how large was your tumour, mine is 5.4cm and I'm worried it is malignant, as the prognosis for reoccurrence and metastasise is very poor! I hope going forward you have better care, and you Radiotherapy goes or has gone well. All the very best to you x

Corvo 7 days ago in reply to SBT

Hi SBT

Sorry to hear about your diagnosis. A year on from my original Lumptectomy I’m in a much better place. My tumour was only about 3.5 cm but it was malignant. While that does mean there is a higher chance of reoccurrence I am being screened every six months and that will continue for five years then dropping to annual screening.
im glad you are getting support and would recommend looking at the Phyllodes Support Group on Facebook which has been really helpful. Phyllodes is so rare that the group has members from around the world and it can offer you reassurance not only from those who have experienced this but also from health professionals
wishing you well in your treatment x

SBT 7 days ago in reply to Corvo

Hi Corvo,

Well I must say I'm so glad I joined this group, your message was so helpful, I am going to join this group on Facebook, thanks for the recommendation. I hope going forward you keep well, all the very best for your in the future.

Thank you x

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