Big Decisions To Make
My name is Kim, I'm 44 yrs. old and a mother of 6. My youngest is almost 2 yrs. old.
I went into my gyno with a lump in my right breast. He sent me for diagnostic mammo and ultrasound. Radiologist came in and told me there was something very concerning on my LEFT breast pics! SHOCK! He wanted me to come back for a biopsy in 2 days. I kept asking, "What about the lump I found in my right breast"? He just kept telling me we would worry about that later, my left was extremely concerning to him.
Well, had the biopsy, came back the next day, CANCER. "WHAT"?????????? This is not happening!!!!!
I was told I needed to see a surgeon and that the surgeon would have my treatment plan. Besides surgery, he of course, did not. Radiologist did not explain this process very well. I'm still not quite sure when I see the oncologist. I'm assuming after surgery.
So, the surgeon sends me for an MRI to see whats going on in my right breast and get an exact size of the tumor in my left breast (1.7 cm).
MRI comes back with 2 very suspicious spots in the right breast. I need to have 2 biopsies done on the same breast at the same time. Let me just say, OW! My breast looks like, as my one daughter told me, "It looks like your boob is decaying"! It is black, blue and red all over! Biopsy on my left, did not bruise like this.
Get a call from the hospital the next day. The 2 areas are benign! Yea!!!!!!!!!! Whoa.........wait, what? Don't even remember what they said about the first area, something about fibrous tissue. All I remember is her talking about the second area which happened to be close to my nipple. "You have some FUNKY stuff going on in there." Her words, not mine. It is called radial sclerosing. OKKKKKKK..............what the heck is that? She was not very helpful with it, except to tell me they recommend a lumpectomy.
So, then I go on an internet search. I find that this is somewhat rare. It can up my chances of breast cancer by 150 to 200%. Can find ABSOLUTELY NO information on having the cancer and RS at the same time in oposite breasts.
I called the American Cancer Society to try to get some statistics, they have nothing. They recommend I contact the NCI Seer program. They may have these statistics.
My surgeons office, of course, was closed. Praying I hear from them today. Really need someone to go over these results with me again.
Anyone out there have these two together in oposite breasts, IDC and Radial Sclerosing?
I'm thinking along the lines of bilateral mastectomy. I had already decided to to remove my left breast. I just keep thinking that if this RS ups my chances of breast cancer 150 to 200%, how much more do the odds go up being that I already have breast cancer along with it? I'm thinking they go WAY up! I don't know.
I still have 3 of my 6 children to raise. I want to do everything I can, to make sure I don't have to do this again. That if I can do ANYTHING to make sure I'm here to finish raising my babies, I'm doing it. Even if it only ups my chances by .01%. I don't want to mess around! I don't ever want to put my family through this again, because as much as everyone is telliing me. "This is about you, your body and what's right for you", it isn't for me. This involves my entire family. From my parents and in-laws to my two grand babies also. They are ALL going through this with me.
Comments
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I am not sure where you are located, but if you have the possibility of being treated at a comprehensive breast cancer center that deals exclusively with breast cancer, I highly recommend it. I am in the Boston area and was treated at Dana Farber. From the moment I met with my surgeon, my entire treatment plan, appointments etc were all mapped out for me by my nurse navigator. She was always available for me to call and ask questions. My case was also somewhat unique and was reviewed several times by the tumor board, so I knew I was getting comprehensive care.
Hopefully someone else will weigh in on your specific diagnosis. Hang in there - once you have some more information and plan it will get better. You can do this!
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I don't have answers for your questions but i agreed with crazyride43. See if you can go to breast center and make appt with surgeon who will sit down with you and go over all the options.
I was in scenario when I was diagnosed in June with general surgeon who wanted to move quickly and recommended lumpectomy with radiation. I felt pressured and rushed. I took a step back and got a 2nd opinion. I went to a dedicated breast surgeon at a comprehensive breast center and went through my options with me...mastectomy or lumpectomy with radiation. I decided for left breast mastectomy in my case b/c there were other "funky" things going on it that breast as well. It is a very personal decision. Seek out 2nd opinion even 3rd opinion if you have to. You need to feel comfortable with the surgeon you are with. You are in control. The breast surgeon will then guide you to medical oncologist or rad oncologist if you need to see before or after surgery. In my case I had mastectomy and only needed to see oncologist after surgery.
Hope this helps. I know exactly how you feel
i am 39 and have a 7 and 8 year old. hang in there. -
I recommend see an oncologist right away. He is the one that is overseeing all my treatments. We decided to do chemo first (which the BS was fine with) and that gave me time to prepare for the surgery, mentally and physically. It also gives you time to think about reconstruction and and have the PS on board during the MX. Yes, you want to take action right away but get a second opinion so you don't end up second guessing yourself later.
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Thank you all, I am actually about an hour from Chicago. I have access to some great cancer trmt. places there. I was wanting to stay as local as possible because of the fact I have a 2 yr. old. I'm thinking I will be heading toward Chicago now though.
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Kim, welcome to the board. But sorry to have to meet you here!
As the others have suggested, given that you appear to have something going on in both breasts, I agree that it makes sense to talk to an oncologist before you make any decisions.
I'd also suggest that you get a copy of the pathology report from the biopsies, and copies of all your screening reports, including the MRI. You want to know exactly what was found - what you heard during a discussion and what is written in the report might be different. Sometimes the presence (or lack of presence) of a single word can make a big difference. One of those words is "atypical". There are lots of conditions that without the word "atypical" don't increase your breast cancer risk, but with the word "atypical" are considered to be high risk conditions. So before you draw any conclusions about what's going on in your right breast, you need to have accurate information about the pathology from the biopsies.
As for your risk level, numbers like a 150% or 200% increase in breast cancer risk sound scary, but you have to be very careful in how your interpret what you read. Most of the time (but not always), risk numbers are stated against what is considered to be a 'base' risk. Base risk is the breast cancer risk level that all of us face just because we are women, before any other risk factors are added in. I believe that base risk is in the range of 4% - 5%. So a 200% increase against base risk would put someone's risk at 12% - 15%. Most women do have some risk factors; when you look at all women together, the 'average' risk is about 12.5%. This means that for someone who has no other significant risk factors, a 200% increase in risk might simply be bringing her up to 'average' risk.
Sorry if that risk discussion is confusing. What it comes down to is that you need to be very careful when determining your risk level - it's easy to miss a word or misinterpret or misapply a number. The best advice is to talk to an oncologist about your risk level. In your case, because you've now been diagnosed with breast cancer, you do have that as a risk factor and an oncologist would factor that in, as well as whatever was found in the pathology of your biopsies.
Hope that helps. And good luck as you move on to the next steps of consultation and surgery and treatment.
Edited for typos only.
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Beesie,
Thank you for that.........it is frightening when no one is being clear, even when you ask them to be. Then you turn to other resources like the internet and become even more frightened. I am one of those people that NEED to know everything that is going on. I want to understand EVERYTHING so that I can make an informed decision that will effect the rest of my life and that of my family. I am soooooooooo grateful that I found this site full of women going through the same things and willing to share their knowledge and insight.
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Kim, sorry for such a confusing diagnosis and for you having any reason to be here! But, Bessie is the pro here! Listen to her.
You are lucky to be close to Chicago and yeah, get the best you can for treatment and if you need a second or third opinion....get it! You may want to get a small recorder. That way you can listen to what is said, at home in peace. Hoping you have someone with you are your appt as that sure helps.
I found that having my hospital close to me waas a huge help. Meant for me that I worked during rads and really could not have if far away.
Now, deep breath.....lots of em, try to stay cool this weekend, I suggest a massage, facial, mani & pedi! You are on the right path
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Beesie, your posts are always so clear, we are lucky to have you
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Ditto going to a large cancer treatment center - I initially went to a local surgeon who recommended an immediate lumpectomy. Decided to get two more opinions from top cancer centers and they both recommended chemo first and then surgery later. It's important to get opinions from folks who treat many of these cases and know all the different options to offer; even better if you are close to one that has everyone (surgeon, oncologist, radiation, plastic surgery, etc) on site.
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Do any of the top tier Chicago cancer hospitals have suburban satellites near you? That could give you the best of both worlds. Everything is run through the main locations, and they use all the same protocols. For example, I did my chemo at Memorial Sloan Kettering, but at an outlying location, so I didn't have to travel into the city for treatments.
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Yes, thankfully there are. Will be going to Michiana Hemotology Oncology PC. My oncologist is an assistant professor at Rush. Feeling very blessed and confident right now.
Based on discussion of my new pathology results, I will be having a modified radical mastectomy on my left breast and a simple mastectomy on my right. It is the right decision for me and my family.
Thank all of you for replying. Hoping to be back in another forum soon. My surgery is this coming Wednesday. September 11. Thankful for any prayers that come my way. Praying for everyone here as well. God Bless
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We will be thinking of you on Wednesday, and wishing you much strength and courage! Please let us know how things go!!
((((Hugs)))),The Mods
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I too had chemo first then surgery and then chemo again, and then I got married and then rads, and this is after my 2nd opinion, and Praise GOD, I am now 19 yr Survivor, so you are in my prayers and once you get treatment plan things will not be so overwhelming. msphil(idc,stage2,3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)
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Well, had my surgery Wednesday morning and came home Friday evening. Feeling wonderful except for the drainage tubes. I have two in the left side and one on the right. Don't have any results yet. Was expecting to at least know about lymph nodes when I got out of surgery. Had a sentinal node biopsy before he began the mastectomies.
Was told after surgery that he decided to send everything out instead of getting results from the hospital where the surgery was perfomed. At this point, I don't really care. I am just sooooooooooooooo relieved that the surgery is done and that I feel so good physically.
Go back to the surgeon this Friday, the 20th. Should have all results then. Praying to have at least one of these drains removed!
Thanks for all the prayers, I really can tell people have been in prayer. God is so good and I am so humbled by the amount of people who have reached out to me.
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I am 2 weeks out past surgery tomorrow. Healing very well and headed to the oncologist for my first appt. tomorrow.
Struggling with the idea of chemo and the idea of no chemo! Which will he suggest, will I still want chemo if he says I don't need it? Right now, YES!
Want to go at this with every weapon I can! All guns blazing!!!!!!!!!!!!!!!!!
I'm going to KICK cancers butt!
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we will help you thru the steps as you get a treatment plan and we r here for you, msphil(idc,stage2,0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen am now a 19 yr Survivor (Praise GOD) so hang in there.
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msphil,
Thank you! Awesome to meet a 19 yr SURVIVOR!! God bless you and I'll be praying you make it cancer free till the good Lord calls you home!
I actually had an excellent visit today. So glad I did my research and picked this oncologist myself.
He was informative, concise and had the best bedside manner. He even sort of quized me to make sure I understood everything he said.
He thinks because of my age, tumor size and grade (which he said is a 3 not 2) he is recommending chemo. He ordered the oncotype dx test right then and said even if I score in the gray area (which he believes I will) he is recommending chemo. If I score low then we'll pass on it.
I left feeling like a weight has been lifted off of my shoulders. I can handle all of this physical stuff, BRING IT ON! It's the mental that has been killing me.
Now, I know what the plan is and can move forward, feeling confident! I go back in 2 weeks for the results and if it's to be chemo, he's going easy on me he said. Once every 3 weeks for a total of 4 trmts.
Kimberly
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Heading back to the surgeon's office today to see if I can get any of these nasty drainage tubes out. Been trying to find different ways to hang them under my shirts so I don't recieve stares from people. So far, best place has been around my backside. I look like I have a GIANORMOUS BOOTY but head on, no one notices.
Will be nice to sleep on my side again, aaaaaaahhhhhhh.......
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Never thought of hanging the drainage tube on the back! Hmmm... Well I only have one left and hopefully it's gone by tomorrow, when I go for my follow appointment . Those things are a pain! I came home with 4. Such a relief when they are out! Hang in there!
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Actually got all 3 out, with the threat of a very large and long needle if I come back with fluid build-up. He only removed them because he was concerned about infection. Aperantly I've been lifting my arms too much.
So, planning and trying extremely hard to be good this week. So far, so good. Made it through the weekend without doing bad, at least.
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Lissy,
Really hope you got your last one out! You're right, it was a huge relief!
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At last drain free! The last one came out today and I am so happy! Now I wait for oncotype results.
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Lissy,
Exactly what I'm waiting for too. Glad you got your last drain out! Praying your oncotype comes back good!
Kimberly
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Onc called late yesterday to reschedule my appt. today. Results of oncotype dx won't be in till the 14th. So........off I go on the 16th now instead.
SO over the waiting game.............took me some time to come to terms with the waiting stuff but pretty sure I'm good for now!
Have a wonderful day anyone who reads this! Prayers coming for all of us!
Kimberly -
Well, my oncotype score was 16 so NO CHEMO! I was relieved and then went into a bad depression for a few days. Think it was just everything finally coming to a head. That and really scared about NOT doing the chemo. Feel like maybe I'm skipping a step and will pay the price later in my life. My oncologist really thought I would score in the low 20's and just about had the chemo scheduled.
He told me my recurrence odds are only 10%. Praise God.........so why am I still scared? Think I will be looking over my shoulder for the rest of my life............
He is placing me on Tamoxifen for the next 10 yrs. Thought it was only going to be 5 but new studies you know.....
Anyone reads this and wants to find me.......I'll be around on one of the Tamoxifen forums. Will post later which one.
Will continue to post here periodically about side effects and what not.......in case it could help someone else. This site is so overwhelming with how many forums and groups there are.
Love to anyone reading..........we are fighters!
God Bless
Kimberly -
Just decided to come right back and post my whereabouts!
I'm in the forum: Hormonal Therapy - Before, During and After
the group or topic is: Bottle 'o Tamoxifen
Hope to see you there! -
Well, been on the big T for a bit over a week. Last few nights have woke up sweaty. Not sure if it's the fact that my hubby is a furnace and we actually had to turn on the furnace...........or if this is the beginning of a SE. Last night I woke up several times, only for a minute each, to remove blankets or cover back up. Not sweating enough to get out of bed and shower or anything though.
We shall see!!!!!!!!!!!!!!!!!!!! I've been told by several ladies that SE's usually begin anywhere from 2-4 weeks after starting T.
Prayers for all of us!
Kimberly -
Oncotype 19, getting 4 rounds of chemo because of it.
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One of the worst weeks since my diagnosis............struggling so hard between depression and anger. My family, of course, has taken the brunt. They look at me like I'm nuts now. Very certain the Tamox se's are on the rise! Besides the mood swings, have a lot of joint pain in hips, fingers and lower back is killing me. Also having some insomnia issues the last couple of days. NO hot flushes yet......keeping fingers crossed.
Talked to the onc a couple weeks ago about the depression issue, he wanted me to go to our family doc and would prefer I go on Effexor. Have an appt this Fri. Praying it helps.......guess it will help with hot flushes if I even get them. -
Lissy,
Pray you are doing well {{{HUGS}}}
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