Newly diagnosed

Posted by shiney50 on 14 Jul 2014, 01:02AM

Hello all

I was diagnosed with phyllodes cancer in the right breast last Friday. I know nothing of this cancer and what I read is confusing.

My questions are these:

Is it hereditory and does it respond to nutritional diets or is surgery the only way.

I would really like to hear from someone who is post surgery.

Thanks

Comments

LouiseTurner's picture

Hi there shiney50,

I am sorry you have had to join us here but there is a mountain of support and information available to help you along. If it is phyllodes tumor that you have this group, see link below, might be of interest. Hope it helps. LouieXXX

http://www.bcna.org.au/group/11746

 

Re Phyllodes tumor

shiney50's picture

Thank you for the reply

So far the diagnosis is for this type of tumor however on Thursday I see a specialist and will know more.

thanks again

Sheena

Phyllodes Tumor

Trena's picture

Hello Sheena

I'm so sorry to hear your news.

I was diagnosed with a malignant Phyllodes Tumor in my right breast last September. Since then I have had a lumpectomy, then a full mastectomy and reconsrtuction surgery.

My tumor was very agressive and grew very quickly.  From the day I found the lump, it felt like about the size of a pea to six weeks later when I had the lumpectomy, it was actually poking out the side of my breast and when removed was 4cm x 5 cm x 1.5cm in a triangle shape.  It was disected into 15 pieces and 14 of them were malignant.

That is why they decided a full mastectomy would be best option, to ensure good margins were taken with a smaller risk of it returning.

Phyllodes is not hereditory which is a blessing.  It's a rare form of breast cancer that is less than 3% of breast cancer diagnosis.

From what I was told and what I could find on-line, the sepecialists say that chemo or radiation do not have any affect on this type of cancer, so removal was the only option.  That is just what I was told and what I read.  Your specialists may have different information.  You will have to wait and see.

The recovery from the lumpectomy and mastectomy was quite good.  I was suprised how well I got over them.  The reconstruction took me longer to get over but I am back to normal now, 7 weeks post reconstruction.  I was back at work after 2 1/2 weeks.

My thoughts are with you moving forward, I hope your specialist appointment goes well.  Please do not hesitate to contact me with any further queries.  Please join the Phyllodes specific group, it will be a great support for you.

Kind regards

Trena

Hello Trena

shiney50's picture

Hi Trena

Thank you for the reply. I found the lump Saturday before last. Knew instantly it was not going to be a good outcome. Having said that did not expect the size or type of cancer I had not heard of. The size of mine is 44mm x 33mm x 29mm when I found it a week ago. I am told the doctor is very good and I hope so. I will post how I get on with the specialist on Thursday. Thanks for the support

Sheena

Hello

shiney50's picture

Hello Louie

Thank you for the support. I am getting a bit lost on the site as I do not quite know how to read posts

however I am stumbling across them. I will keep in touch I see the surgeon on Thursday so feeling okay however apprehensive as it is all new to me

Thanks again

Sheena

bethyb's picture

Hi, Shiney!

Nice to meet you, although sorry you're here.

They know very little about phyllodes, but do not believe it is hereditary. It will not respong to diet changes. Surgical removal with wide margins is the only known effective treatment, although some people undergo radiotion therapy with successful results if the tumour has spread.

I have had two surgeries. The first time, I had two phyllodes tumours removed. The margins (the amount of tissue taken from around the tumour) weren't wide enough that first time, so ones of the tumours grew back about a year and a half later. Since having that one removed almost two years ago now with wide margins, I haven't had any problems.

Hope this helps!

Beth

Thank you

shiney50's picture

Hi bethyb

Thank you for the information. It is a bit surreal atm. However getting around to the actual appt with the surgeon soon and will know more.

I have read this tumor is prone to return. I was going to try diet. I also have read that radiation and chemo do not help.

Thanks again

Shiney50

Surgery Tomorrow!

Tennelle's picture

Hello lovely PT ladies

I am having my 3cm PT removed tomorrow. I am very anxious!

I've been told it is borderline, but then read that this is unable to be diagnosed before removal? I get very confused with the different information I read.

What were your experience, if you were diagnosed with a PT prior to you lumpectomy did they tell you it was benign, borderline or malignant or did you only get this information after?

How did your breast look after? My tumour is quite large and with the additional 1cm + margin I am wondering whether I am going to be extremely lopsided. Not that I am that concerned with the aesthetics, I just want to be rid of this. But I do want to prepare myself as best I can.

Wish me luck x

katie76's picture

Hi Tennelle, my tumor was diagnosed as benign with a core biopsy but once I had the lumpectomy the pathology came back as borderline. A core biopsy only takes a sample of the tissue and it isn't until the whole tumor is taken out  that they can completely determine the type. My best advice is make sure you insist they get at least 1cm clear margins around the entire tumour. All the best for tomorrow. Xx Katie.

Hi Tenelle

shiney50's picture

Hi Tenelle

My tumor is diagnosed as malignant from biopsy. Although I am hoping for benign once the tumor is removed.

Has anyone chosed double masectomy and if so did the tumor appear elsewhere?

Good luck Tenelle I hope all is well and that the surgery goes well

Shiney50

Lozza's picture

Hi Shiney 50,

Sorry to hear you have phyllodes tumour. I suppose the bright side is that we are not a common variety group! The good news is that with surgery hopefully we all will go on to lead long fullfilled lives. We wont have to go through chemotherapy or radiotherapy. I am post mastectomy and reconstruction surgery of seven weeks. It has been along and hard road with lots of complications and I still have more surgery to go through but at the end I will be still alive and be able to live my life with my family. So good luck and just dont put it off for too long as the tumours only get bigger. Good luck!! Lozza

Thanks Lozza

shiney50's picture

Thank you Lozza

I am seeing my surgeon on Thursday and will know then when the surgery is. Yes it is good that we do not usually have to go through chemo etc. I did cut my hair short though and now it will be easier to care for while I go through treatment. I am 57 by the way.

Shiney50

Thanks Lozza

shiney50's picture

Thank you Lozza

I am seeing my surgeon on Thursday and will know then when the surgery is. Yes it is good that we do not usually have to go through chemo etc. I did cut my hair short though and now it will be easier to care for while I go through treatment. I am 57 by the way.

Shiney50

welcome

katie76's picture

Hi shiney 50, I have added you to the phyllodes tumor group. You will have access to all the posts in the group and there is also an article that I have added. Please feel free to ask questions and post your experiences when you feel ready. If you put phyllodes tumor into the search bar on this website you will also find other blogs that have been written on the main site like the one you have posted here. Thanks too to all our wonderful members for the great support. Best wishes xx Katie.

Hi Sheena, Trena, Louise, Beth

Colleen63's picture

All the best with your coming surgery and aftermath with your Phyllodes Tumours and I hope my outcome will help you through your current situation.

My story is in the thread on here to save repeating it all but briefly I had a very large ( the size of a guinea pig) borderline malignant Phyllodes tumour of the right breast removed 3 years ago and last week received my all clear.  This is despite not having good 1cm clear margins - 1mm, 3mm and 10mm and my tumour was growing from the chest wall so it had to have a good scraping.  Good news for me and I hope that you have the same result in time.  

My surgeon did say that it does not mean it wont come back but looking good if it hasn't come back within 3 years and that anyone having had a tumour  it is always possible that it could return.

Radiation and chemo were not recommended, just surgical removal.  Since no treatment was required reconstruction was carried out at the same time as no stomach flap was involved etc.  There is an obvious difference in size of breasts but this does not bother me as things could have been a lot worse.  Hopefully it does not return.

Best wishes

Colleen

 

 

 

 

Hi Colleen

shiney50's picture

Hi Colleen

Thank you for the update and the positive outcome that you seem to have had.

At present I am getting past all the questions from relatives and of course my 32 year old daughter was worried this then meant she may be at risk. It seems from all I am being told that it is not hereditary.

Thanks again

Shiney50

Hi Shiney

jeanie34's picture

Hi Shiney  Sorry to hear that you have to go through this worrying time. I had a left side mastectomy for a malignant phyllodes tumour . It is all a huge shock isn't it , but personally I feel safe now .Surgery seems to be the best course to take . I wish you all the best. You and all the other phyllodes girls especially the young ones. Oh and I was told it is not hereditory too so tell your daughter she is OK ,but always be vigilant anyway. Cheers good luck  from Jeannie 34

  

Hi Jeannie

shiney50's picture

Thanks Jeannie

It is a shock however I am feeling more confident with the information being shared and my daughter is now checking her breasts and will get them checked by a doctor as well.

Shiney50

 

Diagnosis

shiney50's picture

Hi all

The final diagnosis was a malignant phyllodes tumor in the right breast. It was removed on the 21st July. I have been very tired however feeling better each day.

This coming week is a round of tests CT scan and bone tests to check of all is clear. So far from all I have read I am lucky as the pain is not too bad and I seem to be recovering after surgery well. Most of the breast has been retained with only the tumor and margins were nearly achieved on both sides not front and back fully though.

Shiney50

Best Wishes Shiney

Colleen63's picture

Sorry to hear your PT was malignant but you sound as though you are coming through the surgery well and all the best and keep us posted on your results of scan and bone tests.  Look forward to sunny days ahead.

Gentle Hugs

Colleen 

Thank you

shiney50's picture

Thank you Colleen.

I am feeling better each day and staying as positive as I can atm until results of tests are known.

Shiney50

Malignant PT

Lozza's picture

Hi Shiney 50,

Sorry to hear that the results are poor. Fingers crossed that the scans are much better. These tumours spread so rapidly. Its enough to go through the mastectomy but to know that the results come back malignant makes it that much harder to take. Keep faith that all will be ok and heres hoping for a good result.  Good luck and speedy recovery.

Lozza

 

Thank you all

shiney50's picture

Thank you all for the kind words and thoughts is it good to be able to have others who can relate to re this tumour.

The surgery was to remove the tumour however I did keep the breast and most of the margins were achieved that were necessary.

It is one day at a time from here

Shiney50

Shiney

jeanie34's picture

Speedy recovery from surgery Shiney. May all your test results be good ones! There are lots of us here thinking of you. 

 

Trena's picture

Hi Shiney

Prayers are with you for positive scan results. Please let us know ho wyou go.

Hang in there with your recovery.  One day at a time, just take it easy.

Kind regards

Trena

Thank you

shiney50's picture

Thank you Trena

I had the final scan today and find out tomorrow the results. It is such a continual journey. Hopefully the scans will be clear and it will just be checking regularly

I really appreciate all the support and the prayers.

Shiney50


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