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Phyllodes Tumor Recurrence and Pregnant...HELP

LexiiNova's picture
LexiiNova
Posts: 1
Joined: Sep 2013

Hi,
This is my first time posting to this site, but I am hoping to receive some advice or assistance from anyone who can tell me anything about Phyllodes Tumors and their experiences with them.  I was first diagnosed with the tumor when I was 18, but didn't decide to do anything about it until just a couple of months ago (February 2013) at the age of 23. I had a wide local excision, which took a great deal of breast tissue out because the tumor was so large by that point. There was also a fibroidadenoma removed from the same breast--the right one. The reason I had the surgery was because my breast was hurting and the pain was getting to be too much. After the surgery I was in a little pain, but knew it was from the surgery....NOW the same pain is back. The pain I had before, alerting me their was a problem. I went in to just check on it, and it turns out the tumor has grown back. It hasn't even been 7 months. AND on top of all of that I need biopsies for 2 lumps on my left breast.

What bothers me, is how little my surgeon knows about this type of breast condition. Is it considered cancer? Is it not? I am now faced with 3 choices: (1) have another WLE (wide local exicision), (2) have a mastectomy and remove the problem all together, or (3)wait to do anything until the baby is born (as I am 26 weeks pregnant).

Also, the doctors and technicians think I am crazy but I feel my lymph nodes hurt all of the time when I have these tumors. They said the tumors are just reactive and are not affected, but no one looks.  They see that the nodes are swollen but leave them alone. What should I do?

Any advice, tips, shared life experiences would be greatly appreciated. Thank you.

fauxma's picture
fauxma
Posts: 3531
Joined: Dec 2008

Have you had a 2nd opinion regarding all of this?  I think it might be a good idea.  At the least you would be reassured with the opinion of your current doctors.   I don't know anything about these tumors but I think I read that they are mostly benign.  If the 2nd opinion agrees with the first then you have to decide whether to have surgery before the baby comes or after.  Both seen to have positives and negatives.  Surgery while pregnant seems scary but woman do it.   Recovery before the baby arrives would seen to be easier.  But waiting and being in pain for the next 15 or 16 weeks is long time.  And then you would be recovering while caring for a newborn.  Neither seems an ideal choice.  How much help will you have after surgery?  this would be especially helpful if you have a mastectomy. 

Ultimately the choice must be yours.  This is not an easy choice and less so with your being pregnant.  I am sending good thougts that you are cancer free, have a wonderful pregnancy and have a healthy baby.  

Stef 

carkris's picture
carkris
Posts: 4513
Joined: Aug 2009

I agree with Stef, I am sure they checked your pathology. but ask them if yours are benign. for reassurance. From what I understand they are fast growing tumors and can be both benign and malignant. I dont think thsy would let you go on, if they werent benign. but a second opinion might put your fears to rest.

New Flower
Posts: 3917
Joined: Aug 2009

It is a rare form, however there are doctors who are specializing it it. There is a face book group with this type of tumors, please reach out to them. Especially as since your medical team does not provide enough support

second opinion related to your pregnancy is a good idea too.

 

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

How are you ??  Have you had the chance to get a 2nd opinion ?   Please update us when you can ...

 

Strength, Courage and HOPE for a Cure.

Vicki Sam

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