Tumor Size
Has anyone here ever seen someone list a tumor size of over 8 cm? It was my "welcome to 40" gift.
I am newly diagnosed and not seeing anyone here with that kind of size. Chemo will start Tuesday, 6-28. I can't wait to start doing something to fix this!!
Comments
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I have a friend who had an 8cm tumor. She had a lumpectomy two years ago, chemo, radiation and is doing well, Good luck with your treatment.
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How about 10 cm? that's 4 inches. The surgeon came to see me after the mast the next day to tell me the good news - the mammogram had shown 6 inches and it was actually ONLY 4. Nobody said so, but in my cancer centre I think I won the booby prize.
There are a bunch of us here - they'll turn up bit by bit.
Starting to do something to fix it feels very good. BEst wishes and hugs.
Arlene
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BrilandGirl, It's hard to imagine how anyone could do a lumpectomy with a tumor that large. My surgeon said there's no one in the country that would attempt it on mine. Thank you to both of you, BrilandGirl and Flannelette for speaking up on this one. It is the size that is most intimidating to me right now.
Am I wrong or am I seeing the significantly sized tumors in the invasive ductal cancers more often and in the younger women?
I will do 2nd biopsy on opposite breast this week, PET scan this week, port on Monday, A/C chemo starting Tuesday, mastectomy after chemo, then radiation, then continuing with an antiestrogen.
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Jbug - about the age - I was 60. I'd had a Mammogram every year since before 50. My BS thought there wasa mistake in the way my previous mammo was read so he looked at the old ones, but no, it didn't show up the year before. I had the worst grade for bad behaviour cells - ie rapidly dividing - here inCanada a 9 out of 9.
I am curious - why do they do chemo before mastectomy? what's going on in the other breast? -
The left breast has a small lump, 5 mm. Tomorrow I am doing a ultrasound biopsy and if that doesn't allow them to find it (because it is so small), they will move on to a mri biopsy with sedation. They just want to know if we are in fact looking at cancer in that breast as well and if it has spread.
I did genetic testing today because I do have several risk factors that indicate that I could have genetic involvement. I also have two children to think about if I had passed this on or not. I guess if you have the right genetic markers, they recommend a hysterectomy which can reduce your odds of recurrence greatly.So chemo before surgery, I am told is becoming a more common practice to do with young women and really large tumors. It is called neoadjuvent therapy. Often it can be unclear which surrounding structures are directly involved in the disease and which are just showing signs of inflammation. By administering therapy a distinction can often be made. Some doctors give the therapy in the hope that a response will be seen so that they can then decide what is the best course of action. Unfortunately, not everyone is suitable for therapy in this way because it can be extremely toxic. Right now the surgeon is saying that he does not think that he can get clean margins in surgery. So the theory is that you do chemo to shrink it and clean up the margins.
In regard to your clean mammograms, I had my yearly exam right at my 40th birthday in April. She did a breast exam at that time and nothing was found. I found the lump myself in May. I don't understand much about grade yet, but my pathology report says grade two. I had no idea that they went up to 9! Or is it a different scale in Canada?
Thank you again for sharing.
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JBug: Also with a tumor that size, don't be surprised if there are several "grades" just because it is large. I had a tumor over 6 cm and it had all grades present, one -two-three. The MRI before surgery didn't show the size to be over 2.5 cm so during mast surgery, it was quite a shock revealing much larger size. We need better diagnostic tests !!!
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Jbug - it's a different grade scale in Canada.
Hoping for the best for you in your upcoming biopsy.
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Shelly56: that is very helpful to know about the grades. I did see in the pathology report that there is some variation, but no 3's yet. On diagnostic tests: with mammogram they thought that it was around 2 cm, with ultrasound 5 cm, then with breast MRI over 8 cm. That was an interesting journey, so I do expect more things to shift and change like that now. Since I am doing chemo first, with neoadjuvent therapy, I also fully expect to see a much smaller size reported soon!
Flannelette: I got biopsy results back today and everything was negative!! So it is all in the right breast so far.
Thanks for the support everyone!
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Hi J-Bug,
There are quite a few of us here with large tumors, as Arlene said. I was 43 and found the lump before my first mammo (yes, I should have had it at 40). Mine was 9.7 cm x 9.4, the size of a tangerine (can you tell II work with citrus?). Mine was grade 2 (score was 7). I only got one grade on my pathology report. The tumor grade is given by the Nottingham score. I found an explanation that is pretty good:
Within the last decade, histologic grading has become widely accepted as a powerful indicator of prognosis in breast cancer. The majority of tumor grading systems currently employed for breast cancer combine nuclear grade, tubule formation and mitotic rate. In general, each element is given a score of 1 to 3 (1 being the best and 3 the worst) and the score of all three components are added together to give the "grade". The lowest possible score (1+1+1=3) is given to well differentiated tumors that all form tubules and have a low mitotic rate (<10/10 HPF). The highest possible score is 9 (3+3+3=9). The exact criteria for each component differ in each system and the systems are evolving as more detailed data becomes available. Some studies even suggest that mitotic rate alone can be as predictive as the grading systems.
A histologic grade of III is assigned to any patient with a Nottingham score of 8 or 9. Grade I refers to Nottingham scores of 3, 4, and 5, while Grade II refers to Nottingham scores of 6 and 7.
I had a similar experience with a fast growing tumor. I could feel it growing, especially after the biopsy, it kind of went crazy. Maybe it was my imagination. I still feel the mx was probably the right treatment with a huge tumor, but wish I had at least had the information about neoadjuvant chemo. At the time, I was just relieved to get the tumor out. Things just happened so quickly.
My surgeon scheduled me so fast (3 days) that I didn't really have time to research anything and only found out after my mx that neo is used for large tumors. I'm glad you have that opportunity and that your right side is clear, it must be a huge relief. I did think, however, that the point of neoadjuvant chemo is to shrink the tumor to a size that a lumpectomy might be possible. I think it also give the oncologist the ability to tell if the chemo is right and working.
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jbug so glad to hear about your biopsy report. you must be so relieved! Huge difference between the satge 2, which you might possibly be and stage 4, whew!
shelley - thanks for posting about the Nottingham score. As I said, it was so confusing to me, having a 9, when everyone here has 2 or 3. I had a very high mitotic rate - that is, until I drank the cabbage juice - hahah - pretty sure i told you about that one. Hey - the mammo gram said 6" the surgeon only 4" with "what looked like a big mess of mixed DCIS and IDC" - those hooligan cells were shaking in their boots and puking everywhere!, and that kind of chemo is dirt cheap.
I'm same stage as you, but had 6 FEC, whereas you had 3TX - guess they must have decided that was better by 2010. Glad to see you're goingforward - yea arimidex! (in my `case it's sort of creaking forward)
Edited to add I also had no recon. Surgeon wouldn't let me for about a year and a half, till he'd convinced himself it wasn't going to reoccur, and anyway I didn't want it, couldn't care less.
Arlene
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I am seeing that my Nottingham score is a 6.
When did you guys find out if you were HER2 + or -? I am going to ask about that one this week. I don't see that in my doctors notes or pathology report yet. I think I read that it takes 2 weeks to get that information back. So I am probably too early to know that yet.
Shellyj43: I really do appreciate my surgeon and the information he has been giving me. He knew it was a ton to take in, but he has been doing 2 hour appointments with me getting me educated on this. He loaned me a copy of Dr. Susan Love's Breast Book. He is doing a nice job watching to see when I am on information overload and when I can handle more. He also did a gallbladder surgery for me last year when I had gallstones and a hernia surgery for my husband. I really like his style. His background is from Cleveland Clinic and Boston. Now he is hanging out with us in northern Milwaukee area.
Another benefit to the neoadjuvent is that when you clean up those margins and shrink the tumor, there is less risk of "seeding" as they so gently referred to mets. I am hearing that it is quickly becoming the method of choice in the larger tumors. I feel sad for you that you were not given more information in that area. Perhaps there were other factors that made that not the ideal choice. Regardless, it is so nice to see people with these size tumors doing so well!
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jbug: it was quite a while - like 2 months? before my her2 status came back. I was so very borderline my stuff had to be sent to one of Canada's largest cancer faciliies.
As for BRCA - that was done much, much later. My sis had bc about 3 yrs before me. Our mom had bc. But here in Canada they will not do that test until you have 2 immediate connections to bc. so, when I got bc, my sis got a chance to do it, now having 2 connections, and having already applied etc. turns out no BRCA, so they did not do it for me, as I'm the same. Still, there might be another genetic mutation for which they don't yet have tests.
By the way, you've not indicated your yes or no node involvement anywhere?
Nice to hear about your nice surgeon and Dr Love's book is handed out here too - well, from my cnacer centre's lending library. and really interesting about chemo first. yup. in spite of my whopper, when I got my path report - no nodes, no vas inv, margins clear, I went from snivelling on a chair, had been crying non-stop for 20 minutes, jumped up with each one & put my fist in the air and yelled yea! and became a total optimist. By then my 9 didn't even bother me. Hey congrats on the 6! I mean, I know there could be little sneaky buggers lurking - but hey - 3 yrs out and NED. My onc doesn't even want to see me for a year, but I asked her to, in 6 months, cause it reassures me. Every day is a gift from the universe.
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Not sure how big 8 cm is...Never could figure out metrics...But my sister's was the size of a golfball...She was diagnosed as Stage 3b and this August 28th is her 5 yr anniversary and we are going to party like it's 1999!......
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J-Bug: I have been reading posts on this site for months, but had never logged in until I saw your post. Your situation is very similar to mine. I also had a large tumor and had chemo first, then BMX, radiation, and exchange surgery. Doing the chemo first was definitely the right option for me. Within the first two treatments, my tumor shrunk to almost half its original size! By the fourth treatment, my onc couldn't even feel the tumor at all. When I had my BMX, the pathologist couldn't find any evidence of cancer in any of the breast tissue (or the nodes, which were involved based on the biopsy and MRI). They called it a "complete response". I called it "incredible"! The way my onc explained it to me was that this approach allowed us to make sure that the chemo was attacking the tumor. If it didn't respond well, that would give us the option to try a different kind. It did a lot for my mental status once we saw how quickly it was affecting the size of the tumor! I'll be thinking of you as you begin your journey and hope that you have the same successful response that I have had!
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Thank you so much for your response KSteve. Those are the stories I want to hear right now. That is awesome and I hope you have such great health moving forward. Thank you for logging in. I needed that!
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I had an 8.5 cm tumor and also triple negative hormone receptors. I am now a seven year survivor and doing well. I was diagnosed when I was 39. My doctor told me that tumors tend to be more aggressive in women under fifty. I am also being tested for the BRCA gene since being a "young" survivor increased my chances for inheriting the gene. Good luck with your chemo, it will be a rough road but it actually gets better. My prayers are with you.
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My tumor was 8 cm and that is the size of a baseball. Afterwards, the intern assisting my surgeon stated it was large! I am grade 3 and it has been a year since my treatments finished. So far, my PET scan is clean and the tumor markers are stable. I feel good and though I have significant lyphadema, it has not slowed me up. God bless.
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Thank you to medcodergirl41 and anneflorida! Glad to hear you are both doing well.
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J-Bug, the HER 2 stuff takes a few more days--they stain it and have to wait. You should hear soon. I did neo-adjuvant chemo--nice to see it shrink! They couldn't measure it, or even feel it at my last exam--mine was 2.4 cms, but measure 4.5 cms on the outside--and invasion spread out another 3 cms or so. I'm pretty small chested, but they told me my tumor was too big for a lumpectomy at the time.
I wanted to note one other thing. Someone above said they could feel it growing after the biopsies. Me too, and I was WAY worried...until my doc told me that tumors are filled with blood cells, so they bruise and swell up with the biopsies. So, all those needles poking into it were making it bigger! I was so relieved to hear that I practically yelled, "Well, why didn't you tell me THAT?!" LOL! Hang in there, and good luck!
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profbee: I have been meaning to answer you on this. I did find out that I am HER2- at my treatment on Friday. At my onco appt on Tuesday, the doc and I both agreed that there is already some obvious shrinkage. (Of course, after four biopsies, some of that may be reduced swelling recovering from all that.) I have a breast MRI on next Monday for progress update. I have only done two treatments of the A/C so far. It's amazing how well that works! A little scary too!
Thanks all! This was a very helpful thread to know about others with this size of tumor. I wish you all the very best!
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Yay! I've been told that seeing results early on in the chemo bodes well for your long term prognosis too! Good luck, hon!
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When my mom had a lumpectomy in January 2011 they cut 10 inches out of her left breast she is ER+ with mets to skull, spine, lung, liver,and pelvic. The whole 10 inches came back carcinoma.
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My mom works full time and her treatment is going very well hang in there everything will get better.
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I had 10 annual mammograms that showed nothing...found changes myself...tumor over 10 cm.
ILC harder to detect in dense breast I was told. Oncologist said it was there at least 10 years. 50 at diagnosis.
Surgeon said it was the size of a grapefruit....all these citrus references huh...
Two years now, so far so good. Onc visit 8/2/11.
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My tumor was 10cm before chemo. After chemo it had shruck to 5cm. It has been almost 18 months since I had my MX. I had clean scans Nov. 2010 and that dreaded day is fastly coming back up. Wish you the best.
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KittyDog: Did you get clean margins with one surgery? Did you have it only one breast? And did you do a double mastectomy? That will be my next dilemma to solve, but I am leaning toward a double even though it is all in one side. I just don't want to do all this again. I told them I would be all over doing a hysterectomy if that would help because I was done with childbirth after two special needs kids, but they look at me like I'm a little crazy. So I will do some research and bring that up again later when I understand that better. : )
That's amazing that you had a 50% shrinkage! I can only hope for such great results. Thank you for posting!
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After 4 dose dense AC treatments and 12 weekly taxol treatments, I had a bilateral mastectomy. My tumor measured almost 11 cm x 8 cm @ surgery, but, much of the malignancy was gone. My oncologist and I could tell that it shrunk with the neoadjuvant chemo, so, I have no idea how large it was @ diagnosis. I was diagnosed @ age 63 after many years of regular mamograms. however, I always had very dense breasts. Something interesting I have noted in some of the replies to your post - is that some of the grades of the large tumors are less than grade 3. Mine was grade 1. My opinion is that many of the very large tumors took a number of years to get that large, therefore, were the slow growing type. I am now approximately 1 year post surgery and 7 months post radiation and am doing well. No signs yet of any recurrence, which is my biggest fear - since mine was triple negative.
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Wow mimix3! You just beat out flannelette's booby prize! : ) Not a prize that any of us wants… It would have been interesting to know how large it was before. I went through a lot of tests to get size pinned down. They said it was really hard to tell until we got the best measurements from breast MRI with contrast die.
flannelette: I did not mention any node involvement because I don't know the real answer to that until surgery. The surgeon is saying that he will look at the pathology results after chemo results to decide if we do a sentinal biopsy of the lymph nodes or the full-blown kind - I can't remember the name. So far my PET scan did not detect any involvement in the nodes, but I think the oncologist said that it only detects as small as 5 mm. There could be something going on there that is not being picked up.
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Hi J-bug - i am down the street in Kenosha.... And, I have about the same story. I am also ER+ PR- Her2-. I was 46 when I found it - it was originally at 3cm with the MRI. I had a second mass that they ended up doing a biopsy- that was not cancer. Then, I did four rounds of T&C chemo. That did shrink the tumor and cleaned up the margins. I had surgery at St. Lukes. good news - tumor was smaller. Bad news - there were two sentinal nodes adjacent to the tumor and one had a 4 mm tumor in it. So, I lost my lymph nodes under the arm and now I am back getting 4 AC and 4 T then radiation.
Other than dense breasts, I had absolutely no indicators for this - and now I am in this hell hole. Who are you seeing? I would like to get a second opinion on options because ER+ PR- tends to hit much older women - not premenopausal..... It is rare to find someone close with the same prognoises....
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pebee: I am actually quite a bit north of you in West Bend. I see Dr. Zukowski. He works out of Mequon, Slinger and a third location, I can't remember. He has a great reputation and lots of years of experience. He looks like he is in his 50's. I have run into other people that have used him and been very happy. One lady told me that he treated three members of her family with different forms of cancer and they are all survivors and happy with him.
I have been to St. Lukes for some testing, several biopsies. It definitely had a different social atmosphere, not as formal with the patients as some other hospitals that I have worked with, but when I got into working with the nurses and doctors, they were great.
I didn't realize that if they found another tumor in the nodes, they would start you over on chemo. That's good to know, while I am counting down treatments. I just did my 4th AC and I am so excited to be at that point and starting Taxol next.
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