2013 Sister Warriors
Comments
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Hi Janipani! Welcome!
Friends are well meaning, and if we ran on logic alone that statement would work, but as you say, we run with a lot of emotion
I try not to dwell, and to not be consumed by worry, but it is there, in the back, and probably always will be to some extent. Human nature Speaking of friends...today I had a friend/co-worker send me a link to herbal tea that cures cancer....SMH. She meant well, but really????? If it were only that simple.
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Hi TMM60 and welcome. Do they do the Oncotype testing after surgery and SNB? My BS has been very vague about this entire process. Honestly, if it were not for the internet, I would have no clue. I had to CALL the BS yesterday to find out the receptor types for my cancer...he had them, just did not bother letting me know. I guess I will be referred to an oncologoist after my BMX. My BS seems to think that after surgery I can just go home and that will be it. He made no mention of an oncologist and when I would be referred to one.
Luckily the PS has been much more informative regarding the reconstruction part, but the cancer part, I feel like I am flying blind.
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Being still a relative "newbie" since my ALND was 1/7/13, and I haven't gone through chemo or radiation yet, I do spend LOTS of time on these breast cancer sites, absorbing like a sponge. Knowledge is worth your weight in gold... After surgery, you can't do much physical tasks, so sitting in front of my computer reading these forums, getting and giving ideas and feedback, gives my mind something to do, when my body says "veg out". It is truly a journey, and you don't have to look far to find silver linings.
Janice0 -
Hi Janice,
I spend lots of time browsing these sites as well. There is a ton of information! And lots of nice people that understand what you are going through. I am still at work until 2/12 (let's say I am on my lunch break right now
). I will be out for 6 weeks for the surgery. I am an active person and forever have a DIY project going...I think I may go nuts at some point sitting around looking at the furniture in my garage waiting to be refinished and painted. I am hoping maybe spring will come early so I can at least be outside some. I am sure I will be on here a lot more to keep my mind occupied.0 -
Hi momof5inva, I was caught totally unaware of Oncotype testing. My BS set me up with a RO and an MO appt after surgery. Problem here was that I saw RO first and got all set and ready to go with 7 weeks of Rad TX. I was supposed to start Jan 28. In the meantime, I had the MO appt and I was totally sure that the topic would be starting an aromatase inhibitor (i'm post menopausal- age 53). Surprise, surprise when I learned that chemo was NOT off the table. OK, so hold the phone. It takes 7-10 days to get the test results back. Chemo would be done before rads, so rads is on hold pending results.
Here's a really nice overview of Oncotype testing I found on this site: http://www.breastcancer.org/symptoms/testing/types/oncotype_dx
I asked the MO why the BS didn't just get the Oncotype testing done right away. She explained that some women elect not to have chemo no matter what and that not all insurances will pay for testing. Me, I want to have all of the information. My insurance pays 85% of the test, but I will still have to pay $675 out of pocket. Ouch, but I want to know.
In general, to determine if you are a candidate for Oncotype testing, they input your age, general health, ER status, Tumor grade, Tumor size, nodes involved into some software. The results are some statistics that determine, in general, the risk of recurrence without other treatment, the risk if you have hormone treatment alone, chemo alone, or both. (It doesn't factor in rad tx, because that only treats the local area where your tumor was). With my age and other factors, I have a 24% chance of recurrence in 10 years without any other treatment.
So the Oncotype testing actually tests the tumor that took from you. From it, they can determine if you are at low, intermediate or high risk for recurrence by giving a risk score
Low risk (about 50% of tests come back in that range)= chemo doesn't contribute to lowering risk of recurrence (you'd still in the running for hormone therapy and/or rad- all depends on your individual case.
High risk (about 25% of tests come back in that range)= chemo would significantly lower your chance for recurrence
Intermediate risk (about 25% of tests come back in that range= crap shoot time, there is not sufficient evidence to determine whether chemo would or would not significantly lower your risk)
I will know my result on Feb 5 and will share them with you all. In the meantime, I've been pondering what I will do if I come back in the intermediate range. I'm thinking I will do the chemo. I'm healthy (except for BC), and only 53. I'd hate that 10 years from now if I have a recurrence and I didn't do everything I could to lower the risk earlier.
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My Nurse Cancer Care Navigator gave me an excellent book. I've read it cover to cover. It really explains all of the confusing aspects of treatment so well with lots of pictures and a list of questions you might want to take with you to specialist appointments so you know what questions to ask!
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Thanks for the great tutorial TMM60, and welcome!
All I can say for your dr.'s lack of bedside manner momof5inva is that this person sees cases day in and day out (can you imagine what that is like?). So, a dismissive attitude could just be a reflection of "I've been asked this so many times..." Not that that is an excuse (just an explanation). Which is why we need to ask questions, never feel stupid about airing our concerns, asking them to explain things, etc. Make them do their jobs--they work for us! (Of course, be NICE about it!) If you haven't found the pathology check off list and list of questions to ask your dr. on this site, I'd recommend finding and using those, since your dr. isn't one to offer information.
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Wow TMM60 I knew nothing about the oncotype testing so thanks for the information. I am not as brave as a lot of you when it comes to looking up information. I am trying to stay on safe sites that I know have good info but after reading for awhile I get scared and anxious and end up walking away. My mind tends to drift to the dark side with the information and I am trying not to let it. I read a little more after each step but that is all I can do at this point. I am 53 and post menopause too. I still have 7 kids at home and am tryingto keep life as normal as possible for them. I am getting a lot of info from everyone here which has helped a lot.
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Not to worry momtotenkids, you have us warrior sisters to help you
just like you will help us by sharing your experiences.I am a nurse by background, but have no oncology experience so this is a brand new world for me too. Right now, I am an "Informatics Nurse" (translation- a nurse who specializes in electronic medical records) so I know a few tricks about finding really good resources about health topics. I've been really impressed with the resources available right here on breastcancer.org.
It is totally OK that you want information a little at a time. All of this can be so overwhelming!
All that said, the support and information we get from real people, just like us, going through the same thing is so powerful. I am grateful to have met all of you on this forum.
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TMM60 - Great information!!!! Thank you so much! I think if I came back "intermediate", I too would strongly consider doing the chemo.
Funny thing is my my BS keeps rattling off stats (to make me feel better, or just because he likes to???). Back in July he did it trying to assure me that even at a "higher" risk, there was only an 8% chance of me developing BC in the next 5 years. And, 6 months later, here I am. Lucky me. I guess I should have played the lottery. So, ya, I will do whatever I can to increase my odds of being here in the next 5, 10, 20 years.
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I forgot a detail about the Oncotype testing cost that I'd like to share. After your MO orders the test, the lab that performs it calls you to review your insurance and they tell you upfront what it will cost you out of pocket. They also ask you if your income is below a certain level (I can't remember the number- I seem to be distracted and not absorbing all the information these days- gee, I wonder why
). Anyway, the person I spoke with told me that they offer special programs based on income to help women afford the test. I did not get the details since I did not qualify.So don't necessarily rule the test out for yourself if you don't have insurance or limited income. Find out what it will really cost in your case if you meet criteria based on the kind of tumor you have and node status and then decide if this is right for you.
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Momof5inva- I have one similar to yours, my BS at time of surgical biopsy (ended up being lumpectomy) right before surgery told me you only have LCIS, you may or may not in the next 20-30 yrs develop BC.. 4 days later I was DX with ILC! I guess this proves that they really dont know until they are in there and remove whatever it is causing suspicion. Makes it so scary.
TMM60- I am surprised that they would be offering you chemo or even be talking about it with clean nodes. I am a newbie also but your stats are not bad. What makes you a Stage 1b vs 1a? My BS told me I was a Stage1A Grade 2 but it may change with the node info, he only took 2 and they were clean but he told me we would discuss staging when I come in for follow up. I guess I need to look that up. My tumor size was 2mm according to path, according to BS 4 mm..not sure which is correct but either way I know it was tiny. Although this group is IDC I like it here so I am the oddball I guess. I did have some DCIS in my path report so I guess I qualify for the club..:) I am totally against chemo for me, I am scared now and I cant let my mind go there.. I know if it were life/death theres no choice but if the odds of it lowering my chances are slim I wouldnt do it. I have read women on these boards say it lowered their risk by 3-4% but caused all kinds of other issues, not sure if its worth it. I just dont know, fear is not allowing me to make decisions in regards to that. I will happily cover the difference insurance doesnt pay for the test.
My question of the day- so I had microcalcifications on mammo which they investigated, I dont need to go into results I am here so its obvious. I am worried about my left side, how do they know its not also there? I know they didnt see any indication but I cant have peace of mind until I know the left side is clear. ILC is sneaky and hides and I have very dense breasts. Did anyone insist on a MRI or other type of test to give peace of mind of the other side? Will they do that when I go to the oncology center? I have accepted the truth and that this is going to be ongoing for the rest of my life for the right side but I NEED to know about the left. I havent had a MRI or US as I see many have. What did you all do?
thanks
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lemon68--I am glad you are here/have found this group!
My BS ordered an MRI after biopsy showed tumor with IDC. Your case seems to be done in the reverse order than my own experience. So maybe an MRI is the next step for you? Seems like they should want to do this, since an MRI picks up things a mammo can't.
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I hope everyone is having a good as good as ours can get! Anyway I go the PS tomorrow to sign my release and get the final stuff for surgery on the 7th BMX with tissue expanders if all goes well. I have a cold so I hope they don't cancel it. I have a week to get well and I'm taking antibiotics to ward off anything that could crop up bacterial wise. I've had it since Friday so hope I can get this done. I've been waiting since 12/19/12.
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lemon68, my heart goes out to you understanding your fear. So much waiting and unknowns that we have to face in this process! I am actually a Stage 1c (per the path report- although the surgeon said 1b). Seems that this a, b,c thing in relatively new and has to do with the size of the tumor. I am a 1c because of the size of my tumor 1.5 cm.
Here is a nice table that shows this on the Susan G. Komen site: http://ww5.komen.org/Diagnosis/TumorSize.html#size
I did have a breast MRI prior to surgery. It picked up a small apparent nodule on my Right lung- freak out time! But since the breast MRI doesn't really look at the lung- I had a CT scan to follow up on that. CT showed it was a scar- probably from a pneumonia I had 8 years ago. WHEW! The breast MRI also show "an area of enhancement" in my right breast. This means nothing in particular at this point, but I will have a follow up breast MRI in 6 months.
I was told in advance the the MRI is extremely sensitive and does pick up things that are not to worry about in addition to the things you need to worry about. Be prepared that you might need further tests to determine the significance of what they find on the MRI.
What the MRI before surgery told the surgeon is how far out from the tumor (as seen on US and Mammo) she'd want to take to get a clean margin. I'm not sure how any of this applies in your case since you have ILC and DCIS so the path may be different. I'd put this down on your list of things to talk about with you BS at your follow up appt.
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Hey sister warriors
Can you see my happy dance!
BS called clear margins & all 5 nodes) so thankful that I went in for 3 consults to review my biopsy mammo MRI. What a journey the waiting and balancing risks on/off/scoop out melon balls...breath
We will all be fine & we are warrior survivors.
Praying for those waiting for test results those healing those waiting for surgery.0 -
Hi Rynie83, I am really sorry to hear your bad luck year 29. I do have similiar experience and though it is a breast cancer forum, I would still like to share my experience with you.
I am 40 yrs old woman and have been through loads of medical conditions. I have Marfan's syndrome (connective tissue disorder) and when I was 33, I had a massive emergency heart operation (took 7 hours long) because my aortic valve was ruptured. My cardio surgeon told me it was my luck they were able to save me as my condition was quite critical and was unconscious for 48 hours. They replaced it with metallic heart valve and am on warfarin since June 2005. As soon as I started taking warfarin, I started having heavy bleeding during periods and was in agony every time then due to tummy cramp and needed a lot of blood transfusion (sometimes at least 4 pints in each period) as well. There was no other options for my Gynae so underwent for endometrial ablation in August 2006 to stop my periods. It was my misfortune that I could never be pregnant then after. I was not sad for not having my own kids as I have lovely nieces and nephews. I was relieved for a couple of months but lower abdominal cramp did not go away. Later ultra sound report found I had tumors in both of my ovaries which was grown such big that it was ruptured one night and again another emergency opeartion needed to be done for bilateral Oophorectomy. Since then I was on HRT. Due to Marphan's syndrome, whilst doing MRI for my annual cardio follow up, radiographer found I had right carotid artery dialated which goes to my brain which put me in high risk of stoke or haemorrage any time. So my neuro-surgeon underwent for coil embolisation in my brain. I have started difficulty in walking and awful back pain. Then in 2008, my neuro-surgeon found in CT scan and MRI that I had L4 & L5 disc slip, which needed another massive surgery which might bring high complications after operation as it was related to spinal cord. I was recommended for physiotherapy with high dose of codein as pain killers since then until the pain could be bearable as I was still too young to go for it. Year 2009 went on fine but 2010 was a bad luck of my entire life. I got divorced in July 2010 after having 7 years of our marriage, and as was going through highly emotional break down with very low confidence, all of a sudden I was diagonosed with my breast cancer at my right breast (invasive DCIS , tumor 2.5 cm, ER- PR- with Grade 1). I was badly shattered and lost all my hopes and strength I have been saving since I had my heart surgery. With loads of love and supports I have been receivng from my parents and siblings, I revived my hope and moved forward - JUST for them. I underwent for lumpectomy with removal of lymph nodes and I was given loads of radiation. After the surgery, all my quarterly, six monthly and yearly follow ups was clear. I had mammo done in September last year as per my annual follow up; again result was clear. I was pleased to know it. HOWEVER all of a sudden I found another lump again in November last year in the same breast which was much painful this time. My GP instantly referred me to breast clinic; gone through mammo again - nothing was shown up, ultra sound report was suspicious and biopsy was done instantly a day before christmans last year. I was scheduled for an appointment for the 3rd of January for the result. To be honest, this time it didn't make me any difference to wait for the result. I was living my normal life and did not affect me a little as I am getting used to now. What is there to happen more - in worst case scenario - life will be shortened, that's it and nobody is immortal! The result was negative again. They found recurrence breast cancer with hormones negative with HER2 + with grade 3 (more agressive cancer) this time, no option again except mastectomy with removal of remaining auxillary lymph nodes. I am now waiting for my pathology report which is due on this Thursday. I was told I might need to go for chemo with herceptin but due to heart condition, oncologist will decide. I am a little bit anxious and worry for chemo because my family members a lot for me, and I cannot see them worrying due to my reason. I am much positive for my life, strong enough to cope with my situations and have enough strength, and have moved much further in my life though I live at my own. I have gone through life and death to bitter relationship situation to all; there is nothing I need to experience I believe. Hence I am prepared for anything else as it comes in my life now! I am not writing to get sympathy but to share my experience and I advice positivity, hope and faith is highly necessary to live life normal and happy. Thanks for your time to reading it! Good luck to everyone and god bless you!
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Prasanna,
You found the right place because you are defintely a Warrior! I know you are sharing your experience with us and you are not asking for sympathy. I am sorry you had to endure so much, it isnt fair. You have overcome so much and have so many reasons to hold your head high and be proud. This damn BC is just evil, and doesnt discriminate. I hope you get good news on your path report on Thursday so you can make some decisions. I know the waiting is the worst. Most of us here continue to wait and contemplate what to do and wonder if our decisions are the right ones. We are all here to support you as you go through this.
TMM60- thanks for the link I will check it out now. I am hoping for Stage 1A, I call it the best of bad. I was told by my BS that the MRIs show alot of abnormalties that cause panic and he doesnt care for them. You just gave me a good example of that. I will insist upon having it, not sure if I can obtain peace of mind but Im going to do all I can to get it. Thank you..
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Pacools, I too thought that the delay between my diagnosis and surgery would in fact be my undoing. I was diagnosed on 12/20, and rushed to have the surgery on 12/26. My surgeon was not really in favor of moving so quickly. When he was unable to do the surgery (couldn't find the tumor after putting me under for three hours) I was sent to another surgeon in a larger hospital. He too said I had plenty of time to wait (seems counter intuitive to me, cancer and the word wait just don't seem to go together). I was sent for an MRI, yet another delay, and finally had my surgery on 1/18. Thankfully the three lymph nodes came back negative, so I guess he was right I had time. I think it's more mental than actual danger. Now I wait yet again for pathology reports. I think it's a returning theme to this journey. Best of luck to you. Hopefully all will go well.
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Just wanted to let everyone know who is waiting for results or dr visits and worrying that they are waiting too long to have their surgery done. You really do have time to wait and make decisions and get the testing u need. I had first mammo jan 13, diagnostic mammo jan 20, saw BS Feb 13, she sent me for biopsy feb 23, and I got the official news in her office feb 28 :-(. But then she sent me for an MRI, axillary biopsy, bone scan and ct scan (all were clear) and finally genetic testing (concluded unknown significance!)! I finally had my BMX may 2! All along I was freaking out that it was too long but she got clear margins and took 3 lymph nodes all of which were clear. So u really do have time to get things done right and make decisions.
Stay well all and good luck!
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Yea RMlulu! So happy for you!
Thanks for sharing Prasanna13. You've are a living example of being put through many, many challenges and coming out the other side.
OK, I listened to the "Getting Ready: Preparing for Surgery, Chemotherapy and other Treatments" CD. I highly recommend this to folks who are anxious about any or all of these aspects. Dr. Bernie Siegel's premise is the brain is a powerful tool, and the messages we send to it can have a positive (or negative) impact. It's empowering (really good for anyone)--we can choose how we look at what we are facing. He suggests that we have a welcoming attitude for these medical treatments (which can help us turn around any dread or fear we may be having, and possibly minimalize our [negative] reactions, etc.), that we love our bodies (focus on hating the disease and getting it out of our bodies; personally, I have been loathing my breasts lately, so this was helpful to me), and that we visualize these treatments getting rid of the cancer. Something to think about. We all know about the placebo effect, so it's not unreasonable to expect that our attitude can factor into our healing process. He talked about our surgery date being our rebirthday. To me, this is much more positive than thinking "gee I hope they get everything." I want a rebirthday. I want to heal from this and continue my future hopes and plans.
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I can't believe ou also listen to dr. Bernie Siegel! I have bee using the chemo section as this is my first line of attack, and find his attitude and voice calming and empowering. My surgeon wants to do a lumpectomy when I am finished chemo and says reoccurrence rates are almost identical for lumpectomy vs. mastectomy. Originally I just wanted what I thought would be the most agressive approach, but wonder if that was born out of fear. So many decisions, at least doing chemo first gives me time to decide. I know the feeling that waiting is somehow giving the cancer Imelda o grow, but I found trying to do proactive things really helped with the waiting. I originally found my lump dec. 21, had ultra sound/mammogram Dec24, and results Dec 27. I hysterical started chemo Jan. 23.
Strength to everyone and also peace within, we have enough angst in our situations, maybe try Bernie Seigel, or other positive guided imagery. I know it has helped me.0 -
Morning ladies!
Well, when if rains it pours. Just a little background on me and my thyroid. 9+ years ago when I was preggo with #5 my OB/GYN found a lump on my thyroid. Turned out to be a complex cyst, was drained and biopsied several time. Was benign, and they stopped draining it (found if they did not drain is would slowly go down, or not increase in size). Tests for thyroid were always fine, so the last visit to the endocrinologist was 7 years ago. Since then I had my thyroid function tested by my PCP and two U/S to monitor size...results always normal for thyroid function and cyst never grew. Well, on the way home from work last night I don't know why, but I touched my neck, and there at the base, below the cyst, and right above my color bone, was a golf ball size nodule. Hard as a rock. Probably a goiter, but I don't know how I missed it. It is clearly visible in the mirror. I guess I was too focused on my boobs to notice
LOL. So now I have an appointment tomorrow with the endocrinologist...yet another doctor to add to the list. I am sure they will want to biopsy it. I am not really worried, just annoyed. As if I don't have enough to do and think about.0 -
I had a BMX, to avoid the possible issue of a lumpectomy not having clear margins. I watched what Guilliana Rancic went through (first with unclear margin on lx, and then she did a bmx). So I decided on a BMX instantly from the beginning, and have not regretted it. My philosophy was that if it could happen in the right breast, it could happen in the left breast.
However, my BS did say the risk of local recurrence goes down from 10% to 2% with a BMX. He said prognosis is the same with lx or bmx, but risk of local recurrence goes down. Also, I found out after the surgery, that I was Triple Negatie, so I'm elated I went with the bmx, as that changed the %. I was look at a potential higher risk, and cut it down to 10% risk. So in my high risk case, it really mattered having it. However, even if I was a different type of bc, I would still have chose the bmx, because my psyche plays tricks on me, and I would always feel that the other boob was going to be under attack at any moment.
My recovery was not bad. The 1st week was not a problem, I had a pain pump. The 2nd week the most pain, and the 3rd week subsiding. I was driving to my follow-up appointment at 1-week post surgery. I know everyone is different, but I wanted to share my great experience with it, so that you will have a very positive experience to relate to, while you are deciding on what to do.
I will be following along - and I wish everyone a good day, and much calmness as well!
- TNBC BMX vs LX, TNBC MX vs LX, Surgery Decisions, Breast Surgery and Risk Reduction
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Hi Debra,
I am glad to hear your surgery went well. I totally understand your feeling that your other "boob was going to be under attack at any moment". I know nothing is 100%, but I did not want that stress either. I also am not fully confident that there is not more in there...lurking. It is always good to hear from someone who has the surgery. I will have a little over 6 weeks off to recover, so it sounds like that should be plenty of time to rest up and get back to a new "normal".
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Momof5inva: I am sorry I would never have laughed at this before, I know your plate is full but you brought tears to my eyes when you missed a possible golf ball goiter because of eyeing those boobs. I bet there isn't one of us warriors that couldn't say the same thing. I keep thinking I am getting strange sensations in the healthy breast. My mind keeps playing tricks on me, or maybe not. Please give us an update tomorrow when you know more. Happy thoughts and hugs to you.
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LOL pacools...the sad part is, after 5 kids, they really are not that interesting
But you all know how it is. Been so focused (obsessing?) on that part that have not paid attention to the rest I guess. But I swear, this lump was not there 2 months ago. Or so I thought. I will let you know how it goes tomorrow. 0 -
My OD and RD both called and I have appointments next week. On Monday with the OD and Tuesday with the RD. Thought I was relaxed and dealing with it until the phone rang and then the anxiety started again. I also seemed to have picked up a stomach bug yesterday so just not feeling good today. Hopefully I will feel better tomorrow.
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I totally understand the fixation ! There are so many unknowns which is hard for the control freak I am. InspiredbyDolce, can you give me more info as I am also triple neg. I would like to question my surgeon with some numbers. Anything to help get the best survival rates-I really don't care about the visual, I'm 54 and like others have said, they served their purpose. I just want to live.
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Rmlulu- joining in the happy dance for you! Hooray!
Prasanna13- I will be thinking of you tomorrow as you get your path results. I'm sending positive vibes your way!
ReneeinOH and slv58- thanks for the info about the Seigel tapes- i think I will try them out to help lower my stress, I've been putting up a brave front and most days I truly do feel confident but inside is a different story
momof5inva- glad your SOH is still intact (one of my favorite secret weapons against BC!), but geez! Hope it's OK!
inspiredbyDolce- thanks so much for sharing with us who are early in the process. It means alot. That spectre of it lurking elsewhere is certainly on my mind
momtotenkids- I will be thinking of you next week. I understand about feeling like I've got it all under control and then an impending appt gets me worrying.
slv58- I totally understand wanting numbers. It helps me with my decision making. I understand numbers are no guarantee, but it helps me understand risk level. That's why I elected Oncotype testing.
And to all my other warrior sisters- I wish you a calm and peaceful evening!
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