Calling All with Tumors 6 cm +

Options
1246716

Comments

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    Welcome Ossa! Of course I see you all the time in our rads thread too, but I just think that when you are first told that your tumor is over 6 cm, it is such a staggering thought and we need a place to share that connection. When I look at windlass's example of a Cheerio being a 1 cm tumor, versus my softball, it is hard to think that that doesn't mean something way different. 

  • Kay_G
    Kay_G Member Posts: 3,345
    edited January 2012

    Just saw this thread. Not sure how big my tumor was due to neoadjuvant chemo. Both the BS and onc measured it at 7 cms, but MRI said 4.5. At mx, 1.2 cm tumor was left along with a smaller tumor and 2mm of cancer in what used to be two lymph nodes. I am sorry any of us have to go thru this, but it is comforting to hear others with lymph nodes that disappeared and only cancer was left.



    I also have very dense breasts. I never did feel the lump that was the tumor, but bs and onc certainly did. I think I was also fooled because I too thought it was changing with period. I also had thickened skin and inverted nipple. That is what finally made me know. J-Bug, thanks for starting the thread.



    Anyone else have the docs measure the tumor so differently from MRI? Since after mx tumor was 1.2 cms even though it didn't show up on MRI, I think the docs were probably correct.

  • alexch
    alexch Member Posts: 21
    edited January 2012

    Hi Ladies,

    I am also part of the large tumours club. I am always amazed at how I could have missed such a large tumour... It was like it grew overnight. I never really knew if I had any cancer on my nodes b/c my BS said my treatment would not change due to the fact that I had a 7-8 cm tumour so she did not biopsy under my arm. I also had DCIS in the same breast too. I had a uni mx, full axillary dissection was my surgery, I was in a clinical study for LABC I did FEC, docetaxel and Rads.. I am doing the DIEP surgery on Feb 7. I am hoping everything goes well.

    Nice to meet you all!

    Alexch

    Diagnosis: Aug, 2009, IDC, 7cm-8cm, 0/15, Grade 3 ER+/PR+ HER+

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    Welcome Springtime! I do have dense tissue too. Thanks for sharing that site. I will check it out.

    After 5 different biopsies and so many forms of testing, I was convinced that both breasts needed to go, so that I could get on with living more easily. I didn't want to have to "start over" with all of this if it occured in the other breast having already had some questionable areas already biopsied. It took so long to find the cancer to begin with, I was concerned that this could happen again. I was told that mine was "murky" as well.

  • beth1965
    beth1965 Member Posts: 455
    edited January 2012

    Hello all- I am new to cancer i was told i have a 9cm tumor.  It amazes me that so many of us have these huge tumors

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    Welcome alexch and kay1963! Sarahsweety named us LLL - Large Lump Ladies. This is not the most attractive name, but it has a great sound. : )

  • lago
    lago Member Posts: 17,186
    edited January 2012

    I too had very dense tissue. So does my mom & older sister. They don't have breast cancer.

  • Springtime
    Springtime Member Posts: 5,355
    edited January 2012

    Did you all know that dense tissue is 5-6x more likely to develop cancer in the first place, and then it is less likely to be discovered by the typical diagnositc imaging. A double whammy!

    I would have really appreciated this thread when I was first dx'd. I had the largest tumor I had ever heard of and was really scared. When I had no nodal involvement, nobody could believe it. I did this calculator thing once, and it revealed that with a tumor as large as mine, there was an 85% chance there there would be nodal involvement. It has always made me wonder if the cancer was just like a big, fat, lazy pig and didn't want to go anywhere.

    Dense tissue is finally getting the attention it deserves. More and more states are enacting legislation, like CT and TX that inform women of their breast density and what that means. It is amazing to me that for all those years, I was getting mammos and the radiologists knew my tissue was super dense and likely to show nothing. My gyn mentioned that I had dense tissue and that I should get digital mammo when they became avail. Nobody ever told me the risk factors involved with dense tissue. I still find this unbelievable! 

  • anafoefana
    anafoefana Member Posts: 164
    edited January 2012

    The dense tissue seems to be common for us.  I had a history of lumps that came and went. Sometimes they got pretty large, and then would dissappear completely. They were linked to my menstrual cycle and were usually very painful. 

    Ossa, mine was very small when I first felt it also, and then it grew very fast over a few weeks and did not go away.  That is what prompted me to go to the Dr.  I was not due for another mamogram until August.  I felt the lump the end of February and in May it grew very fast.  I was diagnosed on June 10th.  

    I could hardly feel my tumor after the first TCH and it was completely gone by the 5th treatment.  My margins and nodes were clear after surgery.  I just started rads and will be on Herceptin until July.  I am really looking forward to being done.

    I have a little maltese dog that for the last 3 years would jump on my chest and put both paws on my left breast and press down.  He did that every morning when we woke up  and I told my husband "I wonder if he is trying to tell me I have cancer."   My husband told me I was crazy. He doesn't try to jump on me like that anymore, but I know that there are cancer detecting dogs.  

  • panamajayne
    panamajayne Member Posts: 136
    edited January 2012

    Lago I have learned so much from your posts.  3 days ago I had my first of 12 once a month  Herceptin treatments and am wondering how long the diarrhea side effects I am having will last.

     Also does anyone know the total cost of each Herceptin treatment?  I may have to go back to Atlanta to finish the remaining 11 treatments under my Medicare plan.  

  • lago
    lago Member Posts: 17,186
    edited January 2012
    Springtime my probability of my nodes being invaded with my stats were about 80% as well. My BS really thought I would have micromets.
  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Damazon, mine was similar, although not quite so large. At first they had it at just under 5 cm, later they revised up. I had neoadjuvant chemo, so by the time they cut, it was almost gone. It was, however, multifocal, and there were many micro-tumors found after surgery.

  • Eve1956
    Eve1956 Member Posts: 183
    edited January 2012

    I don't have dense breast tissue, and the mammo still missed it, until it was just over 6cm!

    The mammo just showed "something" that required a closer look. Yet, as I mentioned before, although the ultrasound provided a clearer picture it sized it at only 1.7cm, and when the MRI sized it at 2.2cm, in the end all the imaging I had was way off base. 

    They just don't know what they're dealing with until they get in there, and even then.....

  • Springtime
    Springtime Member Posts: 5,355
    edited January 2012

    Eve, I never heard of a breast MRI being that far off! Good grief...

  • anafoefana
    anafoefana Member Posts: 164
    edited January 2012

    panamajayne,  not sure about herceptin cost.  My insurance covers it, but I do have a copay for every visit.  

    You are having stomach issues with Herceptin? I have a little stiffeness in the mornings, but that is the only side effect from it.  So far my heart is good, my numbers are actually higher each time. I hope you feel better soon! 

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    beth1965: The whole reason that I started this thread was that when I was first diagnosed I could not find very many in the 6 cm+ category. Everyone I talked to was so flabbergasted by the size, including some of the medical professionals who did not specialize in cancer. I just wanted to find others with that tumor class of the T3's. Now I am finding so many! Welcome and I am so sorry that you are joining this club. Let us know if you have any questions or if we can help in any way.

  • lago
    lago Member Posts: 17,186
    edited January 2012

    J-Bug I felt the same way when I first came here. I started this post July 27, 2010 and only got 4 responses (I also included  triple positive). There is one gal who's tumor was 10cm.

    I was scared out of my mind. I read my post and realize how I was trying to cover it up. That post doesn't even sound like me. What a difference 1.5 years can make. Looks like I didn't even understand my results. (My tumor with invasive really was 6.5cm)

  • beth1965
    beth1965 Member Posts: 455
    edited January 2012

    j-bug it really is a relief to know that many others have large tumors too i agree. When the doctor said 9cm i almost keeled over i thought it was just me. Mine as well did not show up on mammo+ultrasound. Ultrasound on dec.22 showed no lump but Jan. showed 9cm lump. I was biopseyed and diagnosed in 2 days as having breast cancer. I am having double mysectomy on feb.2

    It is interesting to read all your stories-the site is so helpful

    What is "tumor class of T3" mean as i said iam very new to this i am not sure what many things mean.

  • beth1965
    beth1965 Member Posts: 455
    edited January 2012

    So many people talk about neoadjuvant chemo before surgery i am wondering if i should be having that before surgery getting abit nervous now

  • lago
    lago Member Posts: 17,186
    edited January 2012

     Beth1965 I wondered the same thing and even asked my BS about it. He said it was for larger tumors but I know there was another gal that had the same size tumor and she got chemo first.

    There are pros and cons to both. I think if you are node negative and get chemo first they may not know if it's in your nodes. In some cases they may do a sentinel first but then you end up doing 2 surgeries. I think in my case my BS really thought I would have micromets. Probably the reason why he took out the level 1 nodes without doing a SN biopsy. If I did have micromets and did chemo we might have never know for sure. (I also think that getting those 10 nodes out and seeing they were clear got me a pass on rads even though I was in a gray area).

    Now one of the good things about getting chemo first is they can tell if it works. Am I concerned that maybe the chemo I got might not have worked… no because statistically what I got does work most of the time. Also there was a 40% chance I might not even needed the chemo. 

    My point here is there is more than one correct way to skin a cat. I would ask your onc about it though. You have the right to understand why you are s/he is choosing this path for you.

  • shells43
    shells43 Member Posts: 1,022
    edited January 2012

    Hey all,

    I posted early in the life of this thread and then must not have put it on my favorites list (duh) so I've been reading to catch up for the last hour. I see a lot of familiar names from the class of 2010 and also some new folks.

    Beth, T3 means the tumor is >5 cm. TNM staging is usually determined after surgery, so you won't know for sure until the pathology report comes back. I am T3N0Mx, which means Tumor size > 5 cm, number of positive lymph Nodes = 0, and Metastisis = unknown. You can read about the staging here:

    http://www.breastcancer.org/symptoms/diagnosis/staging.jsp

    Neither my onc nor my surgeon told me a stage (and I didn't ask). I figured it out myself after I got my pathology report. When I did ask, they said they didn't want me to get hung up on a number, and it wouldn't change the treatment I received. I liked that approach.

    I had one of those bagel-sized tumors, 9.7 x 9.4 x 4.7 cm. Thanks for posting that scale. I have always thought of it as tangerine sized. I also found my lump, but only after a bout of "mastitis" where I got a red patch on the skin for a few days and then a lump that was visible. When I first felt it, it felt the size and shape of a tootsie roll. I thought it would go away, that it was an infection (dumb, since my kids are in college). Why would I have mastitis? I had also had some shooting pains, but sort of ignored them.

     I was 43 and had NOT been for my first mammogram yet, thinking I was not at risk after nursing two kids. I too, did not know I had any family history (one aunt) until after dx. I finally went to a friend who is an NP when my nipple started inverting. I did know that was bad.  She sent me immedately for a diagnostic mammo and US. I could see the "stellate" pattern on the mammo film the radiologist showed me, although it didn't look anywhere near 10 cm at that time.

    By the time I was approved for an MRI (mistake in waiting) and then finally a biopsy (4 months later??) it had grown. While getting the ultrasound guided biopsy, the tech was measuring the size of the tumor with the US and the BS said "don't go off the screen". I asked him, is there something else besides cancer that could be that large and cause this much damage? He said yes. But, I should have known. Even then I was still in shock to get the diagnosis when the biopsies came back.

    Sorry for the long post. I really wonder how the tumors can crop up and grow so fast out of nowhere? It is also a mystery how such a huge tumor doesn't make it into the lymph nodes and some tiny ones do. Like Lago, I used Cancermath to assess the risk of lymph node involvment and it was 92%!  I know I am not out of the woods completely,  though.

    Hugs to all my Big Sistas!

  • flannelette
    flannelette Member Posts: 984
    edited January 2012

    Shelley - I too live with the mystery of how my whopper didn't get to my nodes. And I accept it as the most wonderful gift from the universe. And my breast surgeon and oncolgist never told me my stage, as the breast surgeon didn't mention it except he did tell me I was 9 out of 9 on the richter Scale for hooligan cell activity. I told him and my onc I did not want to know, for fear of getting hung up on a statistic and becoming depressed. I only learned it here, and that was 7 months after my MX. I could handle it then.

  • shells43
    shells43 Member Posts: 1,022
    edited January 2012

    Arlene, our stories are very similar (so are our tumors!). I remember getting a lot of laughs from your cabbage juice story just when I needed it! xoxo

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    beth1965: T3 is classified as a tumor that is more than 5 cm across. See this link: http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-staging. Reading that link will also help you understand staging better. 

    The medical oncologist and surgeon told me that doing neoadjuvant therapy would help reduce swelling and shrink the tumor back from the skin and chest wall in order to have a better chance at clean margins. When it gets into the skin or chest wall it is a much bigger deal. Maybe you can ask your medical oncologist (MO) if that is a concern. My cancer was invasive ductal, and that could play into the onclogist's decision as well.

    I struggled with the bilateral mastectomy decision. I hope that you are at peace with that. What helped me was to focus on the bmx as a means of saving my life. I kept saying this is not about losing breasts, it's about gaining life.

    Being new to this, you might find a book, Dr. Susan Love's Breast Book, to be very helpful. My surgeon gave me an older edition to borrow when I was first diagnosed. I bought the newest edition later. It is very well written and you can just use it as a reference tool, looking up what you need to know at the time so that it is not too overwhelming. 

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    What is it about this thread?? Every time I go to post a reply, two or three get posted while I am typing and then I feel like I fell behind! : ) Good to see you ladies again! I was hoping you would show back up with your full personalities intact. : )

  • shells43
    shells43 Member Posts: 1,022
    edited January 2012

    J-Bug, that happens to me all the time. By the time I post, I am already behind!! :)

    It is good we have each other. Nobody I know (of the 4 ladies know with BC) has a tumor as big as mine. I have to remind my docs now and then when I ask for something that I had a huge tumor.

  • 7of9
    7of9 Member Posts: 833
    edited January 2012

    Thank God for you ladies! I feel so rediculous....they say I have two masses, one about a centimeter (the one I felt 2 weeks ago in the shower) the other about 5cm behind it! DAMNIT! Just turned 40 in Sept and saw my general practictioner in July who gave me an exam and said she was confident though I have dense breasts, they were FINE. Would have had my first mammogram sooner but my damn ulcerative colitis flaired up right after my birthday...oh yes, and I got laid off from my job Nov 1.

    Waiting on biopsy results any day but they are 99% its cancer. Met with a surgeon who I begged to help me hit the ground running (sprinting) since I have a 2 1/2 yr old that I desperately want to see grow up. Had my CAT, Bone scan and meeting with plastic surgeon today. All results will be discussed on Thursday.

  • Ossa
    Ossa Member Posts: 919
    edited January 2012

    7of9

    Deep breath..Sorry you have to be here, but glad you found us... Lots of ladies with great amoutts of knowledge here. Good place to come and vent. listen and get/give hugs

  • lago
    lago Member Posts: 17,186
    edited January 2012

    7of9 This is the worst part. I though my life was over when I first got diagnosed. I remember walking around with this big gray cloud over my head. I was told at my biopsy that they were doing the procedure to confirm the diagnosis of cancer…  and if the biopsy didn't prove it then they would do something more invasive to prove it. Also told it looked like a 7cm mass! Yikes!

    But here I sit 1 year 7 months from diagnosis (1 year post chemo) feeling great with a new set of boobie prizes (yes I went bigger) and a great short hair cut that I would have never tried if it didn't all fall out. I'm keeping it short.

    Let us know what happens on Thursday. Try to get some sleep.

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    7of9: I wish you the best through this. You can see from a post that I made in this thread on December 31st that our stories are very similar. With your layoff is there possibility of being called back? I am looking for work now and have had some challenges with that through this. I worked all through chemo at a contract position. I did not tell them at first about my diagnosis because I had been working a different contract position that let me go when I was diagnosed, saying that they couldn't work with the schedule fluctuations. Do you have a huband/boyfriend/partner bringing in an income as well? For my story, I was 1/2 of the household income, so it is a big problem but not completely the end of the world. I have another month or two before I really have to have work or start missing bill payments.

    Let us know how things go. Take it one step at a time though. Focus on the broad strokes of information first and the part that you are in at the moment. If you get into too much of learning about everything, you will just be a big emotional mess.

    Antidepressants really do help ease the anxiety of it all and help you function if you think that is needed. I found Lexapro to leave me emotionally flat. Celexa seems to just take away the anxiety and let me be me but functional. Take care! 

Categories