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

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

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

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 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

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

Newly diagnosed | BCNA Online Network

32 Replies

Trena
Member
12 years ago
Hi Shiney50

I have not had any experience with radiation. My specialist did not recommend it.

There will be other reference areas on this site that will have heaps of info on radiation side effects etc..

Thinking of you, I hope it goes well on 27 Aug.

regards

Trena
shiney50
Member
12 years ago
Hi Lozza

Yes it does seem to go on and on. So far so good. I am not looking forward to radiation therapy though as I am told a high dose is needed with boosts..

Thank you all for the support

Shiney50
Lozza
Member
12 years ago
Hi Shiney 50,

This all sounds very good. Good luck with the MRI. It is a long process but somehow you manage to just keep pushing on. You sort of have to keep going for our families. Anyway good luck.

Lozza
shiney50
Member
12 years ago
Hi Trena and all

I am to start radiation on the 27th August and wondered if you or anyone else has had this and what if any

side effects were experienced.

Did radiation stop any further tumours?

I would appreciate any comments with regards this

Thanks all

Shiney50
shiney50
Member
12 years ago
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
Trena
Member
12 years ago
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
Trena
Member
12 years ago
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
shiney50
Member
12 years ago
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
jeanie34
Member
12 years ago
Speedy recovery from surgery Shiney. May all your test results be good ones! There are lots of us here thinking of you.
Lozza
Member
12 years ago
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

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Newly diagnosed

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