Anybody out there with >10cm tumors, positive nodes

dancingdiva

My tumor wasn't seen by mammos and US but the  originally mass was 3 cm on US. After surgery and removing dense tissue I felt pain at, the whole tumor is bigger than > 10 cm. Margins were positive and it's in 5/7 nodes. I feel like a freak.....who has a tumor this big??!! I feel really scared that it's everywhere. 

I can't seem to find a thread with huge tumours so I'm starting one to connect with any others out there.

Morwenna

I had a lump of a similar size to yours on u/s, that actually turned out to be a complex cancerous cyst.  I had an 8cm "partial mastectomy", or lumpectomy, which turned out to have positive margins at both ends, which led to the diagnosis being IDC of "at least 8cm".

I was told that my lump had microscopic projections, and my BS drew me a diagram looking like a long legged centipede, and that the next step would be mastectomy. This they did the very next day, taking some of my pectoral muscle "to be sure of getting clear margins". Two weeks later I got the path results from the mastectomy: No evidence of cancer!

"That's good!" They told me."All the cancer is gone!" 

WTF???? Did I just have a mastectomy for no reason?

One doctor explained that they would have taken spot samples including from each margin, and because the samples they looked at had no sign of Ca, it was sufficient to say that the mastectomy had successfully removed the cancer. 

However, I am now mystified: Was there cancer after the lumpectomy? Seems unlikely that it stopped at the precise edges of the excised tissue. How big was my tumour anyway??? I've been classed as stage IIIa because it was "more than 5cm", and with a macrometastasis of 0.25 cm in one node, and treated accordingly. 

I have to tell myself that we acted with the best information available at the time, and not to go over and over it, but to move on from where we are now! Stressing about was it/wasn't it is only upsetting for no purpose.

Marie715

Yes, I had a large tumor.  Due to extremely dense breast tissue, it never appeared in mammograms until it was 11cm.  UGH! After nearly a year of treatment, I'm at the " take an anti-estrogen pill once a day for 5 to 10 years" point of treatment.   I'm glad you started this thread. 

dancingdiva

Hi Morwenna And Marie,

I had same problem with dense tissue. Glad both of you are doing well. It is giving me hope. Yesterday it really hit me. I'm 42 with 2 small kids and worried sick, but tired of thinking about this all the time. 

was your chemo more aggressive because of he size?

Marie715

DancingDiva, I did do an aggressive chemo treatment. It is called dose dense.  But many women do dose dense, even if  their tumors are not real large. 

placid44

Dancingdiva,

I don't know whether you have read Jennifer griffin's story. She is the national security correspondent for Fox News. She is triple negative. Her blog says her tumor was "the size of a grapefruit" when discovered. She was diagnosed in sept 2009 and is doing well.

Morwenna

I guess I had "aggressive" treatment, but my cancer was triple negative, grade 3, and I had lymphovascular invasion with cancer found in one node, so all good reasons to be aggressive, apart from size.

What it HAS left me with is a fairly profound distrust of imaging, and I am opting for a prophylactic mx on my right side, which I would not be at all surprised to find has cancer in it, despite mammograms and ultrasounds not showing anything suspicious. *I* am suspicious, even though I suspect the doctors would describe me as neurotic. My GP actually read a letter from my BS which started out "...this anxious lady .... ", which annoyed me somewhat!

AJ62

Hello! 

I was recently diagnosed with IDC and the larger tumor in my left breast was 8x7cm and the second one is growing and about 4cm now. 

I am waiting for results on my left lymph node as the PET scan showed it abnormal. 

No need to feel that way at all. There are many of us with larger than usual tumors. 

I am divorced Mom, age 51 with a 10 yr old son -- I have my moments when this all hits me as well. 

Stay strong! Post here about your feelings and get support. 

dancingdiva

Hi Ladies,

I feel like you Morwenna, don't trust anyone since nobody did anything about this for too long. I also feel very guilty for believing the US and not pushing for more when I thought there was more to the story. in ur case, they seem to have done the right thing..they got it out and u are doing well. But I like u want both out. 

Placid, I will check the griffin story. 

hi AJ62, welcome, feels weird saying that. but we need all the support we can get. 

I' ve  had a heart, bone and CT scan this week. The nurse described me as a "wreck"!! Can't handle needles very well. Well I guess I was a wreck compared to everyone else who was so nonchalant about it. am very worried. 

Glad to have some companions here.

Marie715

Hi Dancingdiva,

    When you said that the nurse described you as a "wreck", I about blew a gasket.  That's terrible that she would say that.  A nurse should always encourage the patient.  Believe me, even women who appear nonchalant have their moments of panic and feel like a wreck.  I remember when I was diagnosed with Polycystic Ovarian Syndrome the nurse said to me "Oh, that can be tragic!"  OMG!    Unfortunately, I was too depressed at the time to call her on her inappropriate comment but I swore from that point on, if a health professional ever said anything inappropriate to me, I would call them on it.  You do the same, now.  Tell them that you need encouragement at this time.  Best of luck to you.  Let me know, if this happens to you again and how you handled it.  You are in my thoughts.

    

dancingdiva

My nurse was actually nice to me. I would have liked to not hear that I was a wreck. But it did get me to do the scan faster which I'm thankful for.

I have no idea how I will endure chemo for hours.

Have any of you had piccs or ports inserted?

Marie715

Hi, your chemo treatments may not last for hours.  It all depends on what type of chemo you have.  My infusions were never longer than 1 hour.  Of course, it was a half day appointment by the time all the prep work is done and I was actually ready for the infusion to begin.  

Yes, I got a port and am very glad I did.  

Good luck!

victoriasecret

Hey just came upon this,,,My tumour was 7.5 I could pull out my path report because I know there was more there..scary sh...any ways I have always looked at it like this its gone I can't go back I would have insisted on further testing but depended on the (experts)..so move on . I remember meeting a women at my last rads appt. I have posted this before ...who when we say hello first thing she says is WHAT STAGE ARE YOU ?....I am stage one she proudly boasts like any stage is fun !!!When I tell her my stage nevermind the size or node involvement she gives me the "poor you" look.ahhh

 So my point is does not matter que sera sera ...live every day living because NO ONE is guaranteed tomorrow..and 5 years on LIFE IS GOOD !

MeToo14

Hi, I too was recently diagnosed with IDC.  My tumor was almost 6 cm and did not show up on mammograms or ultrasound.  If it wasn't for two micro calcifications I would never have been sent for biopsy and who knows what would have been the outcome.  I too can not believe that a tumor that large didn't show up on anything!  The only tests I trust are MRI and PET Scan, they didn't show any evidence of node involvement but until I have surgery in December, I will not know for sure because it can be there microscopically.   I am doing chemo before surgery in hope that I can have a lumpectomy, but again only time will tell if the tumor shrinks enough for that.

I'm sorry that some of you have had bad experiences with your medical team, it is important that you can trust them and feel supported by them.  We are all so scared right now and what we need most is for people to be understanding and a few kind words.  Although with all that being said, I think my Onc thinks I'm crazy, but hey at least he puts up with me.

DancingDiva, I too hate needles and even though I am 35, I still put up a fight.  However, I am starting to learn to deal and am better now. You too will be able to deal with it better as your treatment moves along.

dancingdiva

victoriasecret, good to hear from you, 5 yrs is great. I know that "poor u" look..know what u are talking about.anyways, thanks for writing bout ur experience, not many people in this >6cm thread.

Metoo, I had a port put in and it feels better than needles. U just don't feel it. I, like u had an undetectable tumor so I'm having a BMX in a few months cuz I don't want to deal with unknowns they keep seeing in my breasts.