Calling All with Tumors 6 cm +

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  • lago
    lago Member Posts: 17,186
    edited January 2013

    Dense tissue makes mammos not very accurate. It's like looking for a snow ball in a snowstorm. US are much better but both mammos and US are bad at finding LCIS & ILC. BTW the MRI found my LCIS in the other breast. That's why I did bilateral.

  • hightide1
    hightide1 Member Posts: 244
    edited January 2013

    J-Bug

    First let me say, I am loving a lot of these names! I am new to the boards and I am on communication overload. Decided to dive in without reading the whole thread....so if I repeat the same info, I apologize

    My tumor was 12cm (2008) You must think I am an idiot to ignore a lump that big but I had had it for 20+ years and was told it was just a cyst. No biopsy was ever recommended.

    Had neoadjuvant therapy (TAC) which shrank it considerably.

    Surgery revealed large clean margins and one positive lymph node. Started on Femara and went back to work full-time. This involved an 85% travel schedule. I spent a lot of time hefting heavy bags into an overhead bin and worried about lymphedema.

    Had a sleeve and glove to wear if I thought I was swelling. I get small amounts of swelling infrequently and wear the sleeve when I think I need it. No real problems.

    I had BMX. No local recurrence but extended to Stage IV Feb of 2011.



    Had almost exhausted my chemo list but was placed on Halaven last Sep. This drug has been a miracle for me and I have had minimal side effects. I wish more attention had been paid to those of us with large, dense, fibrocystic breasts. I think too often the message still remains that it is no cause for worry.

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

    hightide1: Welcome! My dad used to call me Jen-bug (from june bug) when I was little. Then my high school friends found out and thought it was hilarious. My best friend from high school very endearingly adapted it to J-Bug. He is a Navy colonel now, but no matter how much we get old, I am still J-Bug to him. Where was your recurrance that caused you to go to stage IV?

  • hightide1
    hightide1 Member Posts: 244
    edited January 2013

    J-Bug,

    First mets were discovered in both lungs and multiple bone locations-primarily pelvis and hips.

    I had symptoms: a dry cough and a very sore right hip. I saw my asthma doctor but he never ordered x-rays and I didn't think to ask. I thought my hip was a result of too much gardening with a shovel.

    I was so busy thinking positively that I wasn't thinking rationally. I was convinced I had beaten the cancer. Regular follow up with my oncologist was 4 months after symptoms started and she was not happy and sent me for x-rays.

    That was the beginning of the mets journey.

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

    hightide1: I keep finding that I am surrounded with doctors on every side who are getting those things right. I have a lot of hip pain and I my family doctor, a nurse practioner actually ordered x-rays and bloodwork. Then I was asked to get a baseline bone density test as I started my Arimidex. Just this week as I had a major bleeding episode I was sent for an endometrial biopsy and PET scan. So far I know the PET came back good, so I would assume the biopsy will as well. As much as I hated the thought of going down this path again two weeks after stage 2 of my DIEP flap process, I am very thankful that they are watching it all very well.

    I just started a new job so I was very nervous about everything going to complete chaos again after finally getting into a new position. I did contract design work all the way through diagnosis and treatments. It was really tough to keep trying to market myself as a valuable employee with wigs and prostheses, etc. So my next decision after all the testing and ER visit this week will be to do a D&C and something else (can't remember the name) or remove the ovaries or a hysterectomy.

  • EmmaL
    EmmaL Member Posts: 28
    edited January 2013

    thanks to all sisters here, especially OSSA.

    sorry i dont come here very often because i decide to keep busy on whatever i can and at the same time, put my cancer-related issues as far as i can. 

    updating my situation...

    Last Thursday, i had the CT scan which was the last check before i started my chemo. Luckily no sign showing metastatic. of couse it doesnt mean that the cancer cell is not spread. doctors are very careful with their words.Cry

    at the same time, my fish test comes out 'negative', which means i am also in the 'tn' group.

    this wednesday, i started my chemo. as far as i know, FEC-T, which is what i am using is quite a 'standard' treatment. Hopefully it works for me as well.

  • liv-
    liv- Member Posts: 521
    edited January 2013

    emmal - good news no mets.

    your stats similar to me -  mine is............ ibc- 10cm - stage 111c - 17/24 nodes - trip neg.

    we will unite our stregnths and get through this horrid mongrel -

    best wishes and thoughts with you.

    xx

  • hightide1
    hightide1 Member Posts: 244
    edited January 2013

    J-Bug, so sorry you are once again faced with big decisions. So many things seem to get wonkie once we start treatment.

    Hope biopsy results prove to be OK.

    What a time to be starting a new job. I was able to work through most of my treatments and when it wasn't driving me crazy, it was a great distraction. Had to retire last June and became batty for awhile trying to figure out how to stay busy.

    What kind of design work do you do? My son is a builder and he is part of ADAC. they are currently running a furniture design contest. The creativity is amazing!

    Hopefully you will have active treatment behind you soon and can focus on healing and moving on.



    Enamel, great news!

  • Skibunny
    Skibunny Member Posts: 66
    edited January 2013

    Hello!



    I have been a reader of this thread for a while now, but have never said hi.



    I was diagnosed a year and a half ago at the age of 33. Largest tumour 8.3cm. I was shocked and appalled! Whenever they speak of breast cancer in the media wtc they talk of a pea-sized lump! Which must be less than 1cm.



    I've finished treatment now and do get really scared...



    Anyway, just wanted to introduce myself.



    X

  • ridergirl
    ridergirl Member Posts: 443
    edited January 2013

    Hello Skibunny and welcome. Glad you decided to say hi we are a pretty friendly bunch here. Feel free to hang out any timeSmile

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

    Hi Skibunny! I am glad you came out to say hello! It can be a very scary process. When I was first diagnosed, for some reason I was not too scared. I just kept looking at it as a one step at a time process. However, now that I just finished reconstruction, this week really shook me up. I was very scared at first when the doctor and I both thought that I was bleeding vaginally and rectally - and a LOT. Even after they could see that it was just extremely heavy cervical bleeding, it was still scary to think what this could mean - with the doctor ordering a PET scan I was worried that he thought there was another problem, worried that this would get in the way of my brand new job, etc. No one will understand those things as much as this group. Sometimes it gets to be too much to be really active on the site though. I have to watch how the site is working for me and monitor my emotions.

    hightide1: I am a graphic designer, but also working on a master's in web design and interactive. So I am quickly becoming much more technical as I learn programming and higher level programs. I really enjoy having that balance between creativity and technical.

  • lago
    lago Member Posts: 17,186
    edited January 2013

    OK I'm a graphic designer too. I have notice there is a lot of us here. I wonder if job stress has something to do with diagnosis?

  • wintersocks
    wintersocks Member Posts: 922
    edited January 2013

    Iago: I do definetly feel that extreme stress contributed to my diagnosis.

    J-Bug: How frigtening for you to be admitted to the ER, I really hope you are feeling ok.

    Hi Skibunny, pleased you dropped by to say hi. I agree that breast awareness encourages us to look for 'pea size' lumps. When it is found that we are 6cm plus it is a huge shock. It made me feel like I had failed somehow.

    EmmaL  - another UK girl, hello to you. Are you being treated at Christie's ?

    very snowy night here in UK. I have my cuppa and a fat cat curled up next to me. Can't sleep as usual

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

     I once worked for an agency with around 20 people doing mostly Kellogg's design and 3 women there had it and had been through it. There were about 12 men and 8 women. My husband always wondered if it had something to do with the old style monitors that had some level of radiation. http://www.emwatch.com/Computers.htm

  • hightide1
    hightide1 Member Posts: 244
    edited January 2013

    Oh good grief...in my last response enamel is supposed to be emmal. I am going to turn the auto spellcheck off. Between my lousy typing and this irritating feature, I look like like an idiot. Chemo brain is bad enough. Now my iPad has gone to dark side.

  • lago
    lago Member Posts: 17,186
    edited January 2013

    J-bug I'm convinced that stress is one of the factors. Plus my old boss was such an ass, and my BS said that I had my cancer for 4 years which would mean it started about 1 to 15 months after I started working at that place… so I like to blame it on him. Tongue Out That place was so stressful. Next 5 designers they hired quit. I should have too but my DH told me to get at least a year in. I was looking after a year but the economy was bad and not only working long hours but teaching a class too. Finally they let me go but I think they knew I was looking. They just wanted to hire this freelancer… who ran into what I did and quit 4 months later.

  • SolarSister
    SolarSister Member Posts: 67
    edited January 2013

    Hi everyone! I have been a member since I was diagnosed in october 2011, but never wrote anything. I live in Stockholm, Sweden and do have a great breast cancer community there, but I rarely find anyone with my size tumor wich can make it hard for me to relate to them. Even though I wish no one would have to go through this, it does feel good not to be alone.



    I'm going through a difficult time now because of a number of scans coming up. I have a family history of breast cancer (no BRCA-mutation though) and my oncologist agreed on a profylactic mastectomy of the non cancerous breast, and it's standard here to check for mets before that type of surgery. I'm so, so scared. Mostly because I have a sore lower back and pain in my legs in the evening, witch could be because of side affects of both Zoladex and Tamoxifen, but of course it could be something much worse too. My mother died of breast cancer when I was 22 and the memories are very painful.



    Well, apart from that I'm an easy going 35-year old gal with two beautiful boys aged 4 and 8 and a loving husband. Thanks for listening, and my appologies for spelling errors :)

  • SolarSister
    SolarSister Member Posts: 67
    edited January 2013

    Oh, and to answer some of J-Bug's questions: They did the surgery first on me, and after that I had chemo (TAC), radiation and now Zoladex and Tamoxifen. My cancer was like "pearls lined up in a row" (what a way to describe it) that had grown into one digusting 9 cm long messy tumor. I guess the way it grew contributed to the fact that it took such a long time for my cancer alarm to ring. I have small breasts and I did self exams every month! My nodes where clear for some strange reason. This is what I try to hang on to a difficult day like this.

  • lago
    lago Member Posts: 17,186
    edited January 2013

    SolarSister I too had scans before surgery. With big tumors (and in my case a HER2+) it's not unusual for them to do scans. Mine were all clear although some lesions on my liver. They scanned for 2 years. 1 went away the other were stable so everyone pretty much feels they are cysts. I have no family history but one of the initial "scans" they did was an MRI on both breasts. Other breast has a small amount of LCIS so it was recommended I do the bmx… didn't give it a second thought and did it.

    Don't assume every pain is mets. I think in our gut we usually know. Are you sure it's bone pain and not muscle? One thing is if it's in both your legs that might be a good thing. Not sure if bone mets would hit both legs at the same time.

    hang in there and keep us posted. We here to support you ♥

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited January 2013

    J-bug

    I'm planning on having diep in march. That will be almost 3 years from start of my breast ca dx I still think I have the biggest tumor of this group, 16 cm. I usually like being number one, but this is one time I'd take a pass.

    What was your recovery like? How long did you take off work? How long before you felt like yourself again?

  • flannelette
    flannelette Member Posts: 984
    edited January 2013

    Hi Solar sister - looke like I had the very same dx as you, and treatment, too (except my chemo was FEC). No nodes. it's till a mystery to me - I had a 10 cm whopper and it was also 9 out of 9 on the Nottingham scale of BAD cells. I mom and sis had br ca too, but we are not BRCA. This summer I was scanned senseless because a lymph node showed up on my good side in the axialla (underarm) that wasn't there before. I had an Us of the breast, a fine needle biopsy, a CT scan of abdomen and pelvis, a bone scan ibcluding both side of my head , and arms right to fingertips, an MRI and to top it all off, 6 nodes removed from the "good: armit and dissected.

    Nada. Nothing. Not one cell could they find. It was my rash from hell that had my lymph nodes in fighting form. So yes, i had the scans, but all the while they all said it could be from the the rash - the breast surgeon, the radiologist, the dermatologist.

    Do not worry about aches & pains at night.....it would be different if it hurt all the time. One thing is - I'm 4 yrs out, normally would never get a scan, but can now say

    1) I love our fantastic health care system - they are totally looking after me 2) yippee - nothing showed up! whew! and quite probably you will be able to say that, too.

    Best of luck!! ps nobody ever suggested a prophylactic breast removal to me. wonder why?

  • SolarSister
    SolarSister Member Posts: 67
    edited January 2013

    Flanellette! So glad to hear everything was ok with the nodes and no more cancer. It must have been terrifying going through all of those check ups. Where you scared or did you manage to stay calm? And the prophylactic mastectomy, I've been asking my oncologist since diagnosis to please, please take my other breast, so they knew I wanted this badly. When the dna test was done she said that while its not BRCA it's clear it's hereditary and that they do agree it's a good idea to do the other side as well. They wanted to wait another year, but I asked to do it earlier. Long story short: I need to excange my implant on mastectomy side because it went hard from radiation, and they where going to put a small implant in healthy breast to make it look more even. I just asked them to take the whole breast instead and they said ok. They must hate me being so persistant ;) And oh, I am so thankful for all the care I am given.



    My achy back is not too bad, I don't need pain killers or anything. Sometimes I use hot/cold balm on the area because the muscels feel tense, my hip flexors are very stiff too. Well, my osteopath says what it sounds and looks like is irritated ligaments and joints due to stress, to much sitting down, and too little working out. And the hormonal treatment on top of that is not helping. I've heard that bone mets can hurt pretty badly at night while in bed, but I sleep like a baby and have no pain while in bed. Well, this is me trying to talk my self out of worrying sick. In the back of my mind I am terrifyed it might be something... My gut tells me EVERYTHING is mets. I already had a lung scan due to what I felt was short breath, and a bone scan because of a pain in my back. Fortunately they all came out clear.



    lago: So good to hear you did pass the scans, and that the spots are nothing to worry about.

  • Skibunny
    Skibunny Member Posts: 66
    edited January 2013

    Hello!

    I'm afraid I'm just dashing out, but wanted to say a really quick hello to Solar Sister. I'm also 35, am Norwegian, but live in the UK now. My tumour was 8.3cm. I also lost my mother to breast cancer when I was 18 and am so scared having watched her suffer so much. I don't have a BRCA mutation either - but they believe it is genetic, just one of the genes they haven't found yet.

    And your English is perfect!!

    Sorry to dash - thanks so much for my welcome - will write more over the next couple of days. Am off for my recon in the morning!

    x

  • SolarSister
    SolarSister Member Posts: 67
    edited January 2013

    OMG Skibunny, all the similarities gave me goose bumps just now. I hate cancer so much, but we'll be ok right? No stress, but know that I am curious about the reconstruction and how it all went :) Good luck now!

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    Skibunny ...i am also Norwegian (Bergen) but live in Canada.

    solarsister  glad to hear your scans came out clear

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2013

    Elizabeth1959: I think the timing that I went back to work was very unusual because I was so driven because my semester for grad school had already started and I only had contract work and I had to take it whenever it was available. I was back starting the semester in an online school program within two and a half weeks and working I think around four weeks. It was really, really tough to hit both of those timelines. I will look it up again though to make sure I am not stretching things. I think most people need about 8 weeks. I mean, in the beginning, I couldn't reach to wipe after using the bathroom. I needed help with so many things! It is really nice though to not use prosthesis anymore. But, it was the toughest part of the entire experience for me, but I did not have a lot of help, two little ones and no vacation time to use - so there were a lot of stress points involved. So do lots of meditation, make sure that you are ready, centered and feel strong. I will look up and timeline and add more tomorrow night.

  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited January 2013

    J.bug



    Thanks for the info. I am self employed and being off work is a huge financial problem. Not only is there no money to pay myself but substantial overhead continues. I am glad you were able to go back to work at 4 weeks. That is what I need to do as well. Did you work during chemo? I did, that was a miserable experience also. I'm looking forward to hearing back from you



    Eluzabeth

  • lago
    lago Member Posts: 17,186
    edited January 2013

    Eluzibeth I seem to remember going on a bus 2-3 weeks after my BMX (with nodes on both sides and tissue expanders not DIEP) to my old employer (was laid off 9 months prior) to do some freelance work. Standing on the bus is not something I would recommend if you have nodes removed on both sides but sitting on the bus was fine. Had no problems doing the work but it's all computer work. Now DIEP is more invasive but I wouldn't be surprised if you can do it in a month.

  • SolarSister
    SolarSister Member Posts: 67
    edited January 2013

    Well today my doctor called to say my scans where clear! Had a bone scan and an ordinary lung scan (no ct, just a "flat scan") and doctor says that's all I need to do before sugery. The releaf!!! I haven't been myself the last couple of weeks because of all the worrying.

  • lago
    lago Member Posts: 17,186
    edited January 2013

    Yay SolarSister! Clear and set to go!

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