Newly diagnosed...help???

Hi Meredith,

I have a paper on phyllodes and treatment options etc that may clear some things up for you that I can send through if you need it. Private message me you email address and I can send it).

I have done quite a lot of reading on phyllodes from various research articles that I have searched for myself or they were posted through the support groups on facebook.

This is the main information that seems consistent : Phyllodes Tumors have around a 25% chance of reoccuring and whilst they generally come back more aggressive than the original tumor it is thought that most reoccurences are due to inadequate margins being taken in the first instance (that is margins less than 1cm clear of all tumor and tumors that are shelled out....etc). All phyllodes tumors should be surgically removed with >1cm margin!! Phyllodes tumors also from the available research metastasise in approximately 5% of cases to other areas of the body (most common places documented include the lungs, bones and liver) and most have been from malignant phyllodes however there are some cases of Benign and Borderline tumors metastasising. Chemotherapy is thought to be of no assistance in treatment. Radiotherapy is still being researched and tends to be used mostly for those that have malignant tumors or where adequate margins cannot be obtained - the benefits of radiotherapy for phyllodes at this stage are not well documented.

There is not a huge amount of research or information out there but it is important to find information from from reputable sources when making decisions about treatment - hence why I have read as many journal articles on the subject as possible and spoken at length with my specialists. The type of treatment you choose is a personal choice but should be made with the best information and knowledge available to you. You are the only one who is responsible for your health and you should be able to request what form of treatment and follow up it is you want (within reason) and with appropriate guidance from the specialists and surgeons that you trust. In this situation where there is not alot of research or understanding about our tumor so we must advocate for ourselves and that means being well prepared with facts, knowledge and information.

If you would like further information sent to you please let me know and I can send you some through a personal email.

I too have had shoulder and back pain after my surgeries and particularly after my lat dorsi reconstruction. I found that swimming improved this greatly and my plastic surgeon was amazed at how well my other back muscles have strengthened to compensate. I now swim once a week and go to the gym and do boxing, step and pump classes regulalrly - so it does get better.

I hope this helps and I hope you are recovering well. Cheers Katie. xo

P.S sorry for the long post.

Hi Meredith,

I have a paper on phyllodes and treatment options etc that may clear some things up for you that I can send through if you need it. Private message me you email address and I can send it).

I have done quite a lot of reading on phyllodes from various research articles that I have searched for myself or they were posted through the support groups on facebook.

This is the main information that seems consistent : Phyllodes Tumors have around a 25% chance of reoccuring and whilst they generally come back more aggressive than the original tumor it is thought that most reoccurences are due to inadequate margins being taken in the first instance (that is margins less than 1cm clear of all tumor and tumors that are shelled out....etc). All phyllodes tumors should be surgically removed with >1cm margin!! Phyllodes tumors also from the available research metastasise in approximately 5% of cases to other areas of the body (most common places documented include the lungs, bones and liver) and most have been from malignant phyllodes however there are some cases of Benign and Borderline tumors metastasising. Chemotherapy is thought to be of no assistance in treatment. Radiotherapy is still being researched and tends to be used mostly for those that have malignant tumors or where adequate margins cannot be obtained - the benefits of radiotherapy for phyllodes at this stage are not well documented.

There is not a huge amount of research or information out there but it is important to find information from from reputable sources when making decisions about treatment - hence why I have read as many journal articles on the subject as possible and spoken at length with my specialists. The type of treatment you choose is a personal choice but should be made with the best information and knowledge available to you. You are the only one who is responsible for your health and you should be able to request what form of treatment and follow up it is you want (within reason) and with appropriate guidance from the specialists and surgeons that you trust. In this situation where there is not alot of research or understanding about our tumor so we must advocate for ourselves and that means being well prepared with facts, knowledge and information.

If you would like further information sent to you please let me know and I can send you some through a personal email.

I too have had shoulder and back pain after my surgeries and particularly after my lat dorsi reconstruction. I found that swimming improved this greatly and my plastic surgeon was amazed at how well my other back muscles have strengthened to compensate. I now swim once a week and go to the gym and do boxing, step and pump classes regulalrly - so it does get better.

I hope this helps and I hope you are recovering well. Cheers Katie. xo

P.S sorry for the long post.

Nice to hear back from you Meredith and it is good that you got what you wanted even if you were made to feel it was unnecessary.  The bleed must have been uncomfortable and glad to hear that is all sorted too.

I suspect the reason for doctors trying to play the condition down is because many dont know that much about it and are used to dealing with common breast cancer and we offer a challenge!

My surgeon tells me that a reoccurrence of Phyllodes means instantaneous mastectomy but I am also questioning the sense in this too because once Phyllodes has returned it has already sent cells to the bones, liver and lungs.  I am wondering now whether I would be bothered putting myself through a mastectomy when there are 3 other areas of the body on the way.  I will decide when and if I am told it is all that can be done. I dont really see the point at my age of 65 now of  prolonging the course of full blown cancer as a result of Phyllodes returning.

For younger women it would extend their lives and I can see the point of that but prolonging what is an awful cancer medley for the sake of how long?? is cause for rethinking on this. 

An interesting factor is that my mother's two sisters died of breast cancer and one began with breast cancer at about the age of 65 and then developed bone, liver and lung cancer and this was at least 30 odd years ago so her diagnosis was breast cancer.  Strange I say and unsure about the other sister and now my Mum is deceased so no further info available.  I suspect it was Phyllodes but maybe then it was treated as all the same thing.  They were not even caring how they told her, simply said 'its terminal'!

Shoulder pain and neck pain could also be something to do with the awkward position we are put in for breast surgery.  I still have a lot of discomfort in the shoulder blade underside whether its muscular or another Phyllodes time will tell.  This discomfort and pain wakes me and this is how it was prior to diagnosis and its back.  Another thing I used to do prior to knowing what was wrong is carry on with whatever I was trying to do in the way of chores saying 'I wonder if you can get cancer of the shoulder blades'?!!!  So in my case before and after pain and still have it now all these months later.  It will be 2 yr check up in June so it will be interesting to see whether I have developed anything or not and because I also have Systemic Lupus and Scleroderma both auto immune diseases of the connective tissue my pain might take longer to go.  Phyllodes is in the connective strata of the breast and not in the ducts etc .

We girls are blind leading the blind I think but it is good to have this forum to discuss what we think our own findings on this are.

Good Luck to you and fingers crossed that no further problems arise for you.

Cheers to better times ahead

Colleen

Nice to hear back from you Meredith and it is good that you got what you wanted even if you were made to feel it was unnecessary.  The bleed must have been uncomfortable and glad to hear that is all sorted too.

I suspect the reason for doctors trying to play the condition down is because many dont know that much about it and are used to dealing with common breast cancer and we offer a challenge!

My surgeon tells me that a reoccurrence of Phyllodes means instantaneous mastectomy but I am also questioning the sense in this too because once Phyllodes has returned it has already sent cells to the bones, liver and lungs.  I am wondering now whether I would be bothered putting myself through a mastectomy when there are 3 other areas of the body on the way.  I will decide when and if I am told it is all that can be done. I dont really see the point at my age of 65 now of  prolonging the course of full blown cancer as a result of Phyllodes returning.

For younger women it would extend their lives and I can see the point of that but prolonging what is an awful cancer medley for the sake of how long?? is cause for rethinking on this. 

An interesting factor is that my mother's two sisters died of breast cancer and one began with breast cancer at about the age of 65 and then developed bone, liver and lung cancer and this was at least 30 odd years ago so her diagnosis was breast cancer.  Strange I say and unsure about the other sister and now my Mum is deceased so no further info available.  I suspect it was Phyllodes but maybe then it was treated as all the same thing.  They were not even caring how they told her, simply said 'its terminal'!

Shoulder pain and neck pain could also be something to do with the awkward position we are put in for breast surgery.  I still have a lot of discomfort in the shoulder blade underside whether its muscular or another Phyllodes time will tell.  This discomfort and pain wakes me and this is how it was prior to diagnosis and its back.  Another thing I used to do prior to knowing what was wrong is carry on with whatever I was trying to do in the way of chores saying 'I wonder if you can get cancer of the shoulder blades'?!!!  So in my case before and after pain and still have it now all these months later.  It will be 2 yr check up in June so it will be interesting to see whether I have developed anything or not and because I also have Systemic Lupus and Scleroderma both auto immune diseases of the connective tissue my pain might take longer to go.  Phyllodes is in the connective strata of the breast and not in the ducts etc .

We girls are blind leading the blind I think but it is good to have this forum to discuss what we think our own findings on this are.

Good Luck to you and fingers crossed that no further problems arise for you.

Cheers to better times ahead

Colleen

Hi Colleen,

I am back to life as normal right now, I went back in to surgery and had a 1.5 cm margin taken, it was so close to my chest muscle that after surgery I had to get rushed back in to put a drain in as I had a massive bleed! The drain was only in for a few days though and all is well right now. I go back for an ultrasound in 3 months. I have had terrible neck and shoulder pain on the same side since the surgery and the woman that I get massage with has told me that this is common after breast surgery. The doctors just dont tell you any of this which makes me angry because I have been told by a physio and a massage therapist that it may help to have some massage for a week before the surgery to reduce post surgery pain. Anyway, I am getting on with things now and trying not to think about the possibility of the tumor recurring but am constantly checking that for sure!I really appreciate you checking in on me Colleen- I have really felt throughout this whole thing that no one I know understands how serious this is and how scarey because Phyllodes is uncommon and rarely heard of. Everyone says 'oh borderline..at least its not malignant' but they dont understand that it can change at any time. Even my surgeon has made me feel as though I am over reacting abit! I had to demand he take more than 1cm margin and demand that I have a 3month ultrasound instead of 6 month and he was only going to refer me to have my right breast scanned and not both?? I have been made to feel like a hyperchondriac except for when I am reading this blog and the other ladies posts. So thank you so very much for all of the advice so far- it has been extremely helpful!I hope that I can help the next person that is searching blindly for info as I was before finding this group.

Best Wishes to you too!

Meredith

Sorry I have got a bit behind with the group but wondering after reading your post how you are going now.  You can always seek a second opinion if you are not satisfied with the one given.

Hoping by now that you have had some reassuring medical advice.

Best wishes to you

Colleen

Thanks Katie, that clears a few things up for me. I will check those facebook groups out, more info the better i say. It is a real comfort to know there are ladies out there that know what I am going through and it is so important we support eachother- thanks again!

Hi Meredith, sorry to hear that you are going through this too and also coming up with similar attitudes. Currently the best that we have is that a margin of greater than 1cm is recommended and I agree that this is what you need first and foremost. I was told by my surgeon that it was cancer...I had a broderline phyllodes..however many don't call it cancer until it is graded as malignant. All phyllodes tumors do have the potential to become malignant due to their high growth rate, all phyllodes tumors need to be sugically removed with margins to try to prevent reoccurrences. There is very little research on phyllodes - most is retrospective data on treatment after the fact.

If you are after even more information and if you use facebook there are two support groups on there that are worldwide. They are "Phyllodes Support Group"  and Phyllodes Tumor, cystosarcoma phyllodes or whatever it is called.

Please ask questions. Hope this helps.

Cheers Katie.