Calling All with Tumors 6 cm +

J-Bug · January 2012

How many of you have been asked, "Did they catch it early?" "I hope they caught it early and you have good odds?" Whenever I get those questions I always answer with, "Unfortunately, they did not catch it early, but I have had very good treatment results." Every time I get the tumor size question, they look at me like I am already dying when I give the answer.

Anonymous · January 2012

Weirdly, nobody has seemed to have a clue about breast cancer tumor size among the people I've talked to. So whether I said 1 mm or 10 cm, I am not sure their response would be any different.

I do get asked if they "caught it early," which I interpret to mean "did they catch it in time to save your life?" I always answer by saying the cancer hasn't spread, and I am getting every treatment possible to try to prevent it from spreading in the future.

lovinmomma · January 2012

Hi there! My tumor was 7cm at the time I found it. I had a mammo just 4 months previous and it did not show up. I did neoadjuvent chemo and then had a double mx and total hyst. I had 26/26 nodes positive after chemo. I have now had my implants done and I am stable right now.

Thank you for starting this thread.

J-Bug · January 2012

ebann: I am amazed that your MO continued your chemo for nine months with no response. That would be so frustrating. Did your MO give you a reason for continuing anyway? Maybe there was some other benefit? My MO did an MRI every two treatments and then said that if he saw growth, he would change the treatment plan. I guess the couple of times that we did not see any change, we did continue forward. I just thought that was a really tough part in your story. I am hopeful that you get to go on maintenance soon.

J-Bug · January 2012

Welcome Phila. I think that sticking your head in the sand is a form of survival too. You just have to know how long and when to keep it there. : )

I will be starting radiation next week. My MO told me that we would talk at my next appointment more about the option for a follow up PET scan as all this treatment ends. He said that this will be my choice as to how much I feel the need to have it, to reassure me that we have found everything.

When I did my first PET, we found a bony mass on my pelvis, a schwanomma on my spine and an area of activity in my opposite breast. These areas were biopsied and found to be b9. Would you ladies do an additional scan to follow up? I am wondering how long it would take if a seed were left behind for it to grow into something large enough for a PET to detect with grade 2 cancer cells. Perhaps waiting a few months would make more sense?

ductal · January 2012

We all travel our own journeys. This takes strength, for sure. If it helps you to know, I had radical mastectomy, cancer missed by mammogram for at least 10 years...30 of 31 positive nodes. An extra surprise tumor in armpit the size of grapefruit (more than 13 cm) and they had to cut pectoral muscles, etc. to remove it in an all day surgery. Chemo 5 or 6 months, radiation, and too many life changing side effects to mention. Really. Still here to live my life as best I can with my husband and sweet 15 year old. 2 1/2 years now:) Hoping for many more!

BlueCowgirl · January 2012

Good morning ladies!

J-Bug, re: people asking if I caught it early - I didn't have so many people asking "did you catch it early"...but I have had so many people just assume and say "It's so good you caught it early". I think people who don't know much about BC assume that "diagnosed young" = "caught early". As far as your implanted cousin...Bless her heart, that is just WRONG. Blah.

Windlass, I found a lump - I was too young to have ever had a routine mammo. Everything happened so fast - I found a lump while showering, went to PCP who sent me right to a breast center, mammo and U/S the same day with the radiologist telling me he was 99.9 sure it was cancerous before biopsy, which was done the next day. Interestingly, I'd had nipple inversion for many, many years: nipple on the "bad boobie" could look normal and "erect" for lack of a better word, but spent much of its time "in hiding" for years. Every time I had a checkup or went to GYN, I mentioned this and was given a manual exam - no one ever felt any lump (nor did I in self-exams until I suddenly did), and I was told again and again I was too young for BC and too young for a mammo. Although to the doctors' credit, they always did ask about family history and I always answered "none" - wasn't until after diagnosis that my secret family history was revealed to me, but that's a whole other story...sorry for babbling on! I am really working hard on letting go of a lot of anger over this whole thing...Coulda, shoulda, woulda - story of my life.

Re: Diep. That and Lat-flap were the only options given to me too. Due to the extent of radiation I got, was not considered a good candidate for implants. Curious now as to *why* other large tumor sisters are having DIEP recommended - same reason as me or something else?

J-Bug · January 2012

BlueCowgirl: DIEP was recommended to me because of how much skin and tissue they were taking at bmx as well as the tightness of the skin that will develop when I do radiation.

My nipple inversion could be described exactly like yours! I told the health care people all of those things and that it had been this way for years.

It's funny that we could not know about our family history with BC. I found 3 in my family after dx.

Ductal: Welcome! I am guessing your surgery left you with some mobility problems? I am sorry that bc has taken so much from you. I try to keep a mindset that it is not going to take everything else in my life too. It sounds like you are living this the same way.

I do have to work to pull myself out of this computer to get some living done though. I get so sucked into everyone's stories and thinking that the other shoe will drop eventually. Then I think, it might but how did I live until it did? I do computer work for a living and am looking for a new job, so it is tough to fight the temptation.

It is amazing to me how often I am seeing people say that mammogram missed it. I had my baseline at 35, but my 40th year mammogram was my first that was supposed to be routine.

ductal · January 2012

Thank you for saying something back to me. This has been like a bomb went off in our house. The 3 of us cried the entire summer of 09, girl hadn't turned 13 yet, shy and extremely attached to us, our only child I had at 40. A blessing. My husband was able to help a lot and now on his duty day my daughter is so sweet, I know I am lucky, blessed, but it isn't enough. Bad enough she missed normal routine with family on birthday, halloween, Christmas due to transfusion, etc. Now she waits for the worst. I try to have hope and talk to her about missing the present and to live/love now. Glad she really opens up to me. I have angst! Yes, mobility issues are a definite, haha how did you know. I was ill during chemo, on experimental avastin, got congestive heart failure, had at least 5 or more blood transfusions, Got burned so bad during radiation doc said worst burn he had seen, fell and broke ankle, serious neuropathy, hands and feet, feet not as painful, swollen everywhere, wt. gain, balance way off, unable to walk any distance without being winded and excruciating pain due to spasms, could be from scoliosis, had nerve ablation surgery but it did not work, now back is worse and in larger area, fell several times resently, daughter had to get me off floor, took w/c to florida on vacation, weird, made girl sad, but at least I could go. Quit driving, even locally. Lympedema is terrible, wear armsleeve and gauntley 24/7. Not doing as well getting dressed and in shower, or even moving in bed.I will most definitely keep trying, I am determined. Brainmush is getting worse...I signed in as ductal and today my husband reminded me it was lobular:) The things that make us laugh! Enough about this, wont mention rheumatoid and going through eval for Cushings syndrome, have a moon face and hump on back, abdominal wt gain, started long ago also but noticed when swelling around clavicle and back of neck got worse after I fell last time hard and had whiplash symptoms. I am more than double my old wt. There is more, but this feels like a horror novel to see it in print!!!! does anyone else have lobular? Does anyone else know of anyone ever with even close to 30 pos nodes? I know it is doubtful,thought I'd ask. At first I was told to pray for a miracle, maybe I got one to be here now. Initial scans before chemo shocked docs they were clear after huge surgery. Hoping they let me have a pet scan again soon. Ct was clear in summer. I'll take it! I stay up late, ankles swell if I stay at computer all night. Miss my old active life, like everyone else, I imagine. My daughter is homeschooled, I can't be primary teacher anymore. She has tons of cousins and we make sure she has fun, but she watches over me, I rarely wake up and she isn't in my arms.She does laugh and have a twisted sense of humor:) Therapist in previous life and volunteered with hospice. Double edged sword. Anguish for her and how will my poor husband handle everything if it comes to that. Deep, huh! Peace and healthy wishes for the coming year.

ductal · January 2012

No, J-Bug, I won't mention the heart attack now:) I wanted to wish you well on your job, and marvel that you can have the energy to do it. Bully for you. Also, radiation isn't that big of a deal generally, my burn happened last 2 sessions only..don't fear it. And good luck. Don't let anything I said bother you, remember we have our own journeys. Now, lovinmomma, I just noticed the 26/26 nodes. OMG. I can imagine how that blew you away! Can I ask how long before it traveled to stage 4? Sincerely sorry. Is it by any chance lobular? Are they giving you any hope? Hang tough I love that you describe yourself as a fighter! That is probably why you are stable! Take care.

Robyn_S · January 2012

Hello ladies! I found my lump myself - that strange sensation where your fingers just brush over the spot as though suddenly drawn to that spot out of the blue like a magnet. It was a small lump only 2.5cm on the ultrasound, invisible on mammo, but when having the lumpectomy / biopsy it turned out to be over 8 cm like a fried egg. Lobular grows like a web. I had BMX and found another 1.6cm tumour in that breast and a 'healthy' breast full of LCIS. Chemo, rads, tamoxifen and crossed fingers now.

I had TEs in but lost one to infection caused by radiation burns- I think that implants following radiation was being a bit over optimistic- the chest was well cooked and the pec muscle scarred and unyielding even without being inflated. Now I am looking at DIEP this year. I didnt realise how much i liked the TEs til i lost one and hate the lopssided look I have now. The PS had been nudging me towards a DIEP before the infection, i would rather have had implants but DIEP is the only option now and I would rather that than the scarred mess I have now.

Welcome Ductal, you have been through so much , I am glad that you have found your way to these forums- the support of women going through exactly what you are helps bolster the soul especially in low times when you need to talk to someone who understands. It has certainly saved my sanity over the last year! Cheers Robyn

ductal · January 2012

Hello, Robyn, thanks for kind words. It is unlike me to do something like this, but I'm glad I finally did. I am not alone but I feel alone sometimes if that makes any sense.Lets hope 2012 treats you well!!!I'm glad you found something to help you, too. Now, finding the lump? Never did. Have had mammograms since age 40, for at least the past 10 years they have done them every3 then every 6 months. Probably at least 25 mammos because my breasts were real dense and they were watching calcifications, which turned out to be nothing. When I had the 09 mammo, they squeezed extra hard. I can handle pain, didn't think about it. That night my breasts turned purple and red, and my nipple started leaking. Felt like sack of rocks. I went back to clinic by myself next day and asked to talk with a supervisor. A nice nurse examined me and did seem alarmed. This was april3 or so. Breast docs reportedly didn't want to give me an appt because I didn't have breast cancer. The letter came from clinic saying all was clear, I finally got to see a doc and he said I had mastitus and loaded me up with antibiotics and said I would be on them for awhile. My family doc agreed. Both checked breast, said it was filled with blood clots, etc. Finally doc allowed me to have guided breast ultrasound. June got a call from rn, yes it is lobular, will need mastectomy, make an appt. Surgery early july. Lasted from 6 am or so until dinnertime, family worried. Doc talked to me next day I was going home, with tubes, still groggy, didn't quite get what he said. Waited for call on a fri, he did call around 4p and mentioned the lobes and 2nd tumor hidden within armpit..both docs checked armpit thoroughly before. After I healed I was headed to chemo and different onc. doc. My poor family. I had an inner reserve to help them, but it went away over time. I remain in a precarious position but insist on being positive, pretending life is normal, so that it might feel that way. I don't miss my huge boob at all, I miss my entire armpit. Now that time has passed, it is ironic mastectomy was easiest part of all of this for me. Now off to bed:)

J-Bug · January 2012

ductal: You might find some strength in reading threads from the forum on lobular cancer. This is the link to get you there: http://community.breastcancer.org/forum/71. You can also get there by going to the tab that says "Forum Index" and then scrolling down to "Connecting to Others with a Similar Diagnosis". You will also find that if you can get all the information together, mostly from your initial pathology report and fill out the profile information, you will find that people who have similar experiences to yours will find you more easily. They will read that diagnosis line below your posts and be able to relate to you better.

I have an approach to all of this medical information that I am finding works for me. I have two kids with special needs, so I have some experience. First, I try to learn about the "broad strokes". I focus on the overall big picture information. For example, just learning basic information like chemo is a systemic (or treating the whole body system) treatment versus radiation and surgery treating a particular area.

Oh, and before taking in all this information, I found Celexa to be extremely helpful with reducing my anxiety to be able to think clearly. That was the best thing I did in this process!!

Then, as I am emotionally ready take in more information, I focus on the treatment that is next. I watch to see how overwhelmed I feel by the information.

Now, as I am starting radiation I am bouncing around through the information fairly well because I am pretty far along in my treatment plan. I always take some time alone and quiet before every appointment to write a list of symptoms that are going on and a list of questions that pertains to that doctor that I am seeing. What is nice about all this is I can leave most appointments feeling like I am doing the most that I am able to work my way through to finding better health. There is a lot I cannot control, but I am looking for things on my lists that maybe I can make a difference with. After that, I have to let the other gripes go.

I also am working really hard to talk about cancer less with my husband and kids. Since diagnosis, this has been all that is coming out of my mouth. It is hard to pull myself into their world and find out what is going on there. However, I have reached a new understanding lately that by talking about it constantly with them and not participating in their days, I am already robbing them of their mom and wife. In the end, they would probably be relieved for all the drama to end if that is how I lived the entire illness. So my focus right now is to step into their lives more and move back into living mine more. This is no easy task with all the change that has happened!

How do you guys handle all the information? How do you see your role as a patient in the process?

Anonymous · January 2012

My husband put it to me this way: "It make sense for you to be self-absorbed, that's natural. And I can handle even 99% of your energy going into yourself as you focus on fighting cancer. But lift your head up on occasion and notice us, and pay a little attention to what we are involved in. Just that 1% of your attention would go a long way."

J-Bug · January 2012

Robyn_S: I am so sorry to hear that you had to go through that with TE's. There is a thread that you might find helpful if you haven't already seen it, about women having problems with implants. http://community.breastcancer.org/forum/44/topic/766702?page=13#idx_379

J-Bug · January 2012

windlass: That is very well put!!!

ductal · January 2012

J-bug, thanks, I checked out that link and will also try to gather information, yes, that could help. There is a lot of info to be learned from this site! Yes, I also try to focus outward. We talk about all kinds of things and my girl doesn't hear any more than necessary. I have cancer, but I am not cancer, I do need to remind myself sometimes:) Take care.

anafoefana · January 2012

J-bug,

Thanks for telling me about this thread. I also found my mass, 6 months after my last mammo. I didn't go to have it checked right away because I have a history of lumps that come and go. This one did not go and it grew very quickly after a couple of months. I was diagnosed with IDC. Initially they said it was 4 to 5 cm, then with the MRI it was 7cm, mostly in situ. I am HER2 + ER/PR-. I started chemo early July and my mass was almost unpalpable after the first round. I had a second MRI after my 6th treatment in Oct and there was no trace of the mass and nodes appeared clear. I had PET scan before starting chemo and I was completely clear except for the breast. I had a hard time deciding on what surgery to have as I was given the option of a partial mastectomy. After much discussion and second opinions, I decided to go with the least invasive as my body was and is still recovering from chemo. I figured I would have to have more than one surgery if I opted for a mastectomy anyway because they would have had to use enlargers for rads. I had a lumpectomy 11/29 and my margins were clear. I had 3 nodes removed, all negative. .

J-bug, you were diagnosed the same day I was. What a horrible weekend that was! My favorite uncle passed away on the 12th, he was 70 and was having tea with his wife and just fell over. You mentioned your children and I wanted to share I am a Special ed teacher and work with Child Find. I teach 3 to 4 year olds, most of my students this year have autism but my class is a non-cat ID. Challenging but I love working with the families. I understand your approach to this whole thing.

ductal, you have had a hard ride. I totally agree with your statement about cancer. I have had to say that to people who thought they needed to feel sorry for me. I am the same person, I just have cancer now. I am fortunate that my family is very supportive and they have been wonderful about taking care of me during my tough days. They do not like to hear me talk about the possibility of recurrence or that just because I am doing so well it means this will be over in July. I try not to talk about those things, but I wonder and hope I won't be dealing with it again. I did well through chemo over all, had a few bad days after each treatment and at the end had to have a couple of transfusions. But, I worked through most of it. I start radiation tomorrow and plan to work through that as well. I am thinking this will be the easier part of the treatment. I am still on Herceptin until July, but have not had side effects from it. I am looking at it as the next hurdle. I try to focus on the positive as much as I can. Working with children with disabilities I have learned that it is not what they can't do, it is what they can do, that is important. I try to apply that to everything and I think it just makes life easier. I am very grateful for wonderful drs, caring nurses, a supportive family and friends. I have no control over what is happening to me, but I would have never imagined that the people around me cared so much about me and I am very grateful. This is plan B..... plan A threw me a curve ball

J-Bug · January 2012

Phila: I am hoping that it turns out that it is "just" kidney stones. That is a lot to deal with on it's own. I had gall stones and gall bladder removed in 2010 and it was so painful. I kept trying to get by without getting them removed because there was so much going on in our lives at the time. I wish you the best and I hope you can let us know how it goes, copied post or not. : )

anafoefana: Good to see you again. I love what you say about how you learned to change your focus on what you can do instead of what you can't, based on your experiences with special needs kids. It is amazing to watch children with different needs face their challenges with so much tenacity.

I saw that you start your rads tomorrow. I do my simulation tomorrow and then my rads start Tuesday. Good luck!

ductal · January 2012

Phila, pamper yourself, seriously. You sound mentally whipped, and who would blame you. Maybe with meds and sleep you will begin to feel better. I wish you health and light. Take a deep breath, and if it is possible try to empower yourself like the strong woman you are and don't let the C word control you. I know, easy to say. Hard to say what ER doc was doing, but what matters is what you think. One minute, hour, day at a time. Good luck if you are starting rads tomorrow. Peace.

anafoefana · January 2012

Phila,

Having had a history of kidney stones and passing several, I can tell you that it might just be that. I ended up in ER several times for the same stone until they finally passed. I think that the is the worst pain I have ever had. I had two children naturally and kidney stones were much more painful than childbirth! I understand not knowing and waiting! I am sorry you are going through this and hope it is just stones! Let us know!

Thanks J-bug. Today is my big rads day and I guess I am a little nervous now. The first day of anything is difficult! I am sure I will be fine though. Good luck with your appt today. Mine was very easy and quicker than I thought. The tatts are not painful.

J-Bug · January 2012

Phila: That's crazy, but I am glad that you have some answers! We will be thinking of you and wishing for the best. Does your urologist actually perform the surgery or do you go to a specialist or general surgeon?

Anafoefana: You made a comment on the radiation thread about doing rads on the nodes when nothing was found in SNB. I am having that and the RO said that she is doing that because of tumor size. Has anyone else had this in their treatment? Also, did anyone here have AND instead of SNB because of tumor size? I had a debate with all my doctors about this before surgery and I can see you had the unfortunate experience of that discussion after surgery, ana. I had a thread about it that I did before surgery to try to get comfortable with my part in the decision on this. http://community.breastcancer.org/forum/91/topic/776527?page=1#idx_7

windlass: I have been focusing on giving that 1% to husband and both kids since we talked about that above. It is amazing how when I look them in the eye and want to know about their lives how much more they are attentive to mine.

My son went with me to my first radiation treatment today. He had a doctor appointment right after mine. I asked the techs if he could check out the equipment because he wants to be an engineer. He is 15 and has Asperger's and several other labels. He was very intrigued and discussed it with me all the way to the next appointment. I didn't think rads could be so much fun!

anafoefana · January 2012

J-Bug, it was unfortunate to have that conversation now. I am going to a different hospital for radiation because it is closer to my house. I am very happy with the surgeon and oncologist and the team of doctors at the first hospital, Everyone has been so happy and encouraging with my response to chemo. My tumor was mostly in situ and my nodes appeared clear even before chemo so I was comfortable with my decision to just do minimal node dissection. The RO told me that radiation will be enough to make sure and she also told me that we had a home run and it would be a shame to take a chance on changing that. I am okay with it. Things have gone so well for me until now, I am keeping my fingers crossed that they will continue that way.

Phila, would a lithotripsy be out of the question for your stones? I had one when I had 7 and a 5. That is less invasive although though it still means out patient surgery. Just wondering since you are going through so much already!

Anonymous · January 2012

J- Bug: It helped me to write it, too. Since we spoke (typed?), I've been working harder at asking my husband about his day, if he's feeling tired, if I can get him something to drink, etc. I do each of these once or twice a day, and you're right - it makes a huge difference in how he treats me. Phew. It's good to have one more coping strategy in our repertoire!

ductal · January 2012

Hi ladies...at the risk of revealing my brain mush, jbug can you kindly tell me how to get the info about type/size of cancer, etc. I know most of it but can not find a tab that lets me add it. It is probably in front of my eyes.:) Sincere appreciation. I have a lot going on, but will post when I feel positive and able to be uplifting. Take good care, all.

J-Bug · January 2012

We all have the brain mush at times. Get a nap and a good walk and it gets better.

Go to the "My Home" tab at the top. http://community.breastcancer.org/my/home Then click on the button that says "Edit My Diagnosis".

lovinmomma · January 2012

Hey all. Just popping back in to say hi.

It is somewhat comforting to see so may of us who had large lumps that the mammos did not pick up...not!!!

I am having some slight progression in my marker numbers and the doc wants a PET scan to look at a few areas that have come up on my bone scan. Not happy aboput that. Hope we can get it scheduled soon so I can go on with life.

Hope that the surgery is good for you Phila. Kidney stones are bad! My dad drinks lemon juice daily to keep his away and it has worked for almost 2 years now. His doc told him about it.

lago · January 2012

Before surgery I was told my tumor was 7cm, then the MRI showed 6.5cm. That's pretty large in my former a/b cup breast. After surgery the invasive part of my tumor measure 5.5cm and it say that the DCIS part was less than 25% so my total tumor was still about 6.5cm.

I did surgery first followed by 6 rounds of Taxotere & Carboplatin with 17 tx of Herceptin. January 18th 2011 was my last tx of chemo. Sept. 6th was my last herceptin. Currently doing the estrogen sucking drug Anastrozole (got a pass on Tamoxifen too. My onc felt at my age I wasn't going to get my period back so we went with an AI and was monitored).

I got a pass on Rads even though I was in a gray area.

J-Bug · January 2012

So maybe the lemonade that I make with lemon juice will prevent any more stones for me! : )

lovinmomma: I hope your bone scan goes well. I cannot begin to speak for what it would feel like to have the stage iv label, but I know that my focus right now is to try to stop living from event to event and focus on all of those moments in between. Today is the only day that I know that I have.

Although, I have to say, we had our first big snow here on Thursday. I couldn't get my van up a hill because it was a very wet, icy snow and they had not plowed yet. I tried to back down slowly and suddenly found myself sliding into the opposite lane. I stopped at the edge of the hill overlooking a river. I freaked out and said, "I'll be damned if this cancer didn't get me, this river is not gonna get me either!" I sat there refusing to take a foot off the break until I got help. I was too close to the edge to chance it and see where I could go without a guide.

Are you able to work right now? I was concerned with all the neuropathy and bone pain from Taxol that I would not be able to. It has taken four months, but I seem to be starting to get back to functional. I had to do a lot of PT work for that.

lovinmomma · January 2012

That would be scary J bug. Bad roads are treachorous!

I am not really working right now. My dh runs his own business and I help with that, but I quit work after my 3rd child was born. I do not know that I could work at this time. The joint pain can get really bad. I putter and do the computer work for my dh. that ismy extent of working.

It keeps me busy and somewhat focused.

Calling All with Tumors 6 cm +

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