Hi. :(

Time_hope · July 2019

Hi everyone,

It looks like I am sticking around.

I found a lump in my breast in February. After months of ultrasounds, mammos, core needle biopsies, and an excisional biopsy, I was given the scary diagnosis of a maligmant pyhllodes tumor. I think I might be a little in shock still. Since there is only a .05% or so chance that it could have been this, it didn't seem likely that it could happen to me, but here I am.

My surgeon doesn't quite know how to deal with me at the moment. She is taking my case to a board of surgeons that meet to discuss difficult cases and will come up with a treatment plan.

I thought the waiting was the hardest part, but I was wrong. The really terrifying part is dealing with a cancer that is so rare that they don't know how to treat it and has very little data to rely on. I am going to need support from everyone here to make it through. I don't know if I am ready to tell about else about this yet.

OnTarget · July 2019

Hi!

I'm so sorry for your diagnosis! I can imagine how your stress levels must be through the roof!

Everyone here is rooting for you, and hopefully they'll figure out quickly how to proceed for you.

It was a little hard for me to tell people at first, but the outpouring of support from friends, family, and co-workers has been incredible. As soon as you are ready, your support team will be there for you!

Thinking positive thoughts!!

Legomaster225 · July 2019

Hi Time_Hope, Sorry you have to stick around but this is a very supportive group. Maybe someone else has some experience with your rare type of cancer? I do think that taking it to the tumor board is a good thing though. The more heads you can get involved for opinions and treatment plan discussions the better. Have you thought of getting a second opinion from another cancer center. M.D. Anderson or Sloan Kettering or someplace. I am not sure where you are from but it seems that many on this board seek second opinions from them. I wish you the best of luck with your treatments, it is all so very stressful and scary, especially in the beginning.

Heart

ceanna · July 2019

Hi Time_Hope. Waiting is hard but you will have support here. I don't have any info on a pyhllodes type tumor, but since you added a thread with pyhllodes in the subject line, others may recognize it and chime in.

Don't ever worry about telling people. It's your choice of when or IF you tell others.

Gentle hugs (((((hugs))))) as you wait for further details.

Ceanna

downdog · July 2019

Sorry that you are here, but you find great info, advice and support. I think a second opinion is a good idea, as already mentioned. Here is the section of bco, under which you will find some info and threads dealing with phyllodes tumors, which can be benign, borderline or malignant.

https://community.breastcancer.org/forum/137

godisone · July 2019

I am with your in this difficult time of your life and all you need is some self love and courage. Its okay to feel bad and not knowing how to share news with family and loved ones but sooner you do it more quicker would be the love and support pouring in for you. So, the rare Pyhllodes tumor are believed to be mostly benign or sometimes borderline, but very rarely are they malignant, so a second opinion would be helpful. Though Phyllodes tumors are quick to grow but they rarely spread outside the breast tissue. The treatment of choice is usually lumpectomy or mastectomy (depending on the size of the tumor) with wide excision to get rid of all of the cancerous cells.Surgery may or may not be followed by chemotherapy. Your oncologist needs to speak to other doctors as it is a rare type but its definitely not the end of the road. Keep positive and stay strong. I am channelizing my positive vibes to you. Good luck and god bless.

deanders · July 2019

Good morning everyone! This is my first post on this site, I was just Diagnosed with ductal carcinoma but things are very early on so I don't have all the fancy terms and experiences you guys have at this point. I met with the surgeon yesterday and felt slapped in the face (again) that the numbers indicate it is somewhat aggressive, which makes me want to scream "Get it OUT!". But I know they have to form a plan that will keep my long-term success at the front of their goals. It wasn't what I was expecting I guess but I am coming to the conclusion that the only thing I can expect is the unexpected.

I am still trying to figure out how much I actually want to know - I have struggled with anxiety/depression for years and it tends to rear it's head as worrying about my health (ironically). So if I am not careful, I will second and triple guess everything that is suggested, which is to my detriment, so I am being very cautious about feeding that with information that might not be for me. But man, it's tough. Tough not to ask Dr. Google if I'm going to die, how that might happen and what to mentally scan my body for in the process.

This is not what I wanted for the next phase of my life, I am only 45 with no family history, so this is a bit unexpected. There is guilt for not being more vigilant and catching it sooner, regret for every time I was not present because of anxiety, and fear that I will spend the next phase sick treating this and then die for all my effort. And somehow, I need to find a way to live life in the gaps.

Not sure how this is going to go but hope to find support and friendship here.

deanders

Scrafgal · July 2019

Time_Hope....Sorry to hear about your diagnosis...I agree with those who suggest a second opinion. Rare cancers are seen very often at places like MD Anderson and MSK.

Scrafgal · July 2019

deanders

Many of us had aggressive tumors, biologically speaking, and we are doing fine post-treatment. It is hard to trust others with your life, but you just need to find a medical team in whom you can place your trust. Ask lots of questions, until you feel that you understand your situation. A good medical team will want to make sure that you are involved in determining a treatment plan that works for you. Dive into to the go-forward plan and leave any past guilt behind. You just won't have time or energy to devote to the past. You need to stay focused on making a great future!

deanders · July 2019

Thank you Scrafgal! I am in the process of building my team - I felt really good about the surgeon, she was open and honest but hopeful as well. I have not been able to get the Oncology team in contact yet but being diagnosed the week of a holiday is not the best for speedy replies. I have an Oncology Navigator that I really like and the surgeon will be presenting my case at the weekly meeting they hold for new diagnosis patients, which will include oncology, radiology, pathology, nurses, doctors and support staff. I feel very fortunate to have the support and coverage that I have, they are moving as fast as they can but I am learning that breast cancer is not the emergency that we want it to be. Often there is time to decide treatment and care but we want to move move move. I will feel much better when I can move to the treatment phase - now I feel like I have this sinister sludge in my body that will overtake everything the second I stop moving. I don't even want to touch my breast thinking that it will make it mad and it will spread. I just focus on the 24 trillion cells in my body that did what they were supposed to do and imagine them telling the sludge - "Not today - today is ours!" I just hope that the despair I feel every time I get more information can be kept at bay. I'm sure I will ebb and flow, I know I have already and it's only been 6 weeks since I first noticed the problem that sent this ball in to motion.

MRI on Thursday - not sure of the point but the more information my doctors have to treat this - the better off I am.

Salamandra · July 2019

Hey and welcome deanders!

Anxiety is such a bear. If you don't already have a psychiatrist you like, adding that to your cancer health team can be really useful. Your treatment center may even have one.

This stage at the beginning is so hard. I bet it will get better emotionally once your treatment starts, and you'll find your equilibrium again before too long.

GiddyupGirl · July 2019

Time_Hope - the doctors are going to put everything they have into making you well. If you google be careful that you pick quality sites. I made the mistake of googling everything I could find when I was diagnosed and scared myself half to death. I was just diagnosed endof March surgery in April and am now in radiation. It is not fun but I just keep putting one foot in front of the other to get to the other side. Sorta like when the chicken crosses the road. Everyone here is super supportive so ask all the questions you need to. I still haven't told anyone outside my kids sister and husband. Can't wrap my head around doing that yet but everybody is different. You have to do you.

Rikki

Anonymous · July 2019

Hi Deanders,

Just like you, no family history and my surgeon went over initial pathology and told me it was "aggressive". I was angry and terrified when he told me that. Turns out he was wrong. He also told my family it was "rare", and ILC isn't that, either. It's less common than IDC but in fact is the most common form after IDC.

I educated myself (joining here was the best move I ever made after dx), got a copy of my pathology report and learned how to read it. My "aggressive" grade was between a 1-2, meaning it wasn't aggressive. At least not as much as some.

So point is--surgeons sometimes speak out of turn. Relying on a trusted oncologist instead of a general surgeon, and becoming informed, getting copies of every single scan and lab report and learning how to understand them can be a great tool to relieve fear of the unknown.

I too suffer from anxiety--GAD actually. I took Xanax the first few weeks to get through the initial shock. My surgeon, in spite of the above, was a good guy and wrote me an RX on the spot.

Hugs,

Claire in AZ

Anonymous · July 2019

And I'm sorry, Time_Home, that you might have to join us here, but if you search around on these boards you should find someone else in your same situation or a similar one. The thread or posts you find might be older, but knowing you aren't alone and feeling like we haven't been singled out by this disease is really helpful in alleviating fear. I hope for the best for you. BC is BC-we are all in this together, so we are here for you when you need to vent or ask questions. All the advice provided above is good advice; it sounds like you are getting the best care right now. Let us know how it's going.

Hugs,

Claire in AZ

Hi. :(

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