Phyllodes Tumour - any experience?

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Hi
(Not sure if I am posting this in the correct place, or not?)

I’m new here.

I first found a lump back in July. Went to my GP within days and was referred to the Breast Care Clinic. There followed all the tests that I’m sure you are all familiar with. The biopsy initially indicated that I had a fibroadenoma. - Phew!! That was such a relief.

I was given the option of whether or not I wanted the lump removing. My mother had breast cancer and so I knew I would be more reassured to have the lump removed.

I went in for the lumpectomy at the end of September. All went well. It took me a couple of weeks to fully recover, but I returned for my post-op follow-up feeling relaxed and confident that this would be the end of the story.

However… the histology report was not totally reassuring. Yes, the tumour was benign. But, there was a change in the diagnosis to a Phyllodes Tumour. My consultant said that had the biopsy shown this she would have taken away a wider margin of breast tissue. She said that she would need to consult the lab to clarify the findings, then get back to me.

I have now heard that my case was discussed at a multi-disciplinary team meeting and the decision was made for me not to have further surgery/treatment at this stage, but to be called back for screening tests in a few months time, to see if the tumour has returned.

I feel both relieved and concerned by this news. Relieved that I do not need further surgery or treatment at this stage. But concerned that I will be living with the knowledge that the tumour could return.

So, I would really appreciate hearing from anyone that knows about this condition or has experienced it themselves. Is this plan of care normal? Should I be concerned? Or, should I just try and relax now and get on with my life…? - The past 10 days have been SO stressful!!!

Thanks.

Sorry this is a l-o-n-g post.

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bcpals.org.uk/content/phyllodes.html

You may find that link helpful.

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Thanks. That link was helpful.

It seems that my situation is not unheard of, although this is a rare condition. At least I know that mine is benign.

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Hi

I’m pleased you had a look at the posting on bcpals by darkfairy, it’s very informative.

I have first hand experience of phyllodes as I was diagnosed in 2009 with malignant Phyllodes Tumours (oh joy!) and have researched, read and collated as much info as I can to answer my queries.

Dark Fairy makes the best and most important points:

“If you are diagnosed with a phyllodes tumour, the first thing you should ask is whether it is benign, borderline or malignant. The second thing you should ask is whether clear margins were obtained through surgery. Once you have been diagnosed with a phyllodes tumour, it is essential that you have regular check-ups even after it has been removed. This is because a recurrence is possible at any time in your life. Generally speaking, follow-up appointments will be every 3 months for a malignant tumour and every 6 months for a benign one. This will reduce to once a year as time goes on.”

Clear margins are, I understand, the key to phyllodes and reducing any risk of recurrence. After that, regular checks are a must - to check your body but this will also help you with any concerns/worries.

AnnaGoAnna

PS Phyllodes may be rare but there are a few of us out there and we’re a pretty vocal and amazingly caring group. xxx

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Hi GoAnna! (great name!)

Thanks for your reply.

I am reassured that I will have regular checks. The point about “clear margins” being taken is a concern, because as I understand it only the tumour was taken our and not any additional breast tissue.

I do have the reassurance that the tumour was benign.

What would you suggest I do? I am thinking of contacting the Breast Care Clinic to ask to talk with someone to express my concerns.

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Hi soshana66

If you would like to talk this through with some one please do give the BCC helpline a call. Here you will be able to share your concerns with a trained member of staff who will answer any questions you may have as well as offering you support and infromation if required. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.

I hope this is helpful.

Best wishes Sam, Facilitator

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Thanks for your reply Sam. I may give the helpline a call next week, once my boys are back at school. I’m being very careful what I discuss when they are around.

Having read a bit about the condition I do feel a little more reassured. It’s difficult knowing where to go to get the most reliable information. Some of the stuff I’ve read on the internet has been very scary!!!

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I’ve just read this:

“Even though the tumor may be benign, it is still considered a type of breast cancer, because it has the potential to become malignant.”

  • is this correct? Has anyone been told this in such clear terms by a breast specialist?
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Yes - it is classed as a cancer. I have had 2 phyllodes tumors (Fiver Years Apart!). Didn’t expect to be treated like a cancer patient but I was told that you are treated like a cancer patient due to the fact that the tumor can re-occur.

I am told that it is rare to get the tumor twice but the second lump appeared out of the blue at my annual mamogramme. So make sure you keep your annual appointments!