Recurrence
I was dx with a recurrence 10 days ago. Going tomorrow for all the scans CT, PET Muga. I'm assuming for now that it hasn't spread and it is a local recurrence. Onc thinks it may be DCIS that was present 6 yrs ago that has become a cancer. She said that the chemo I did wouldn't have knocked out DCIS since it wouldn't 'see' it as cancer. Looks like the spot is adjacent to the original area.
I've been pretty calm and have had people commenting on that. But I realized today how screwed up I am over this. I was managing a candy sale for DD's scouting troop and almost missed the deadline to submit everything and totally forgot to get the check and acct numbers from the leaders. I'm supposed to be relieving the hardworking leaders of a task and I feel like I added to it. They have been great of course.
I've mostly been researching reconstruction options. That has really freaked me out. I don't want to do recon but am worried that if I change my mind in the future, my options are limited and I'll have really bad scarring. I also needed to decide if I wanted to remove the 'good' breast. I've decided I will. It really is so overwhelming. I can't imagine if I had to make all those decisions the first time around when I knew nothing. I know so much more about bc and all the options and treatments and my mind is still reeling.
I'm so hyer today. Just needed to get it all out.
Sigh..
Annie
Comments
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Annie-I have nothing to contribute other than to offer you hugs and internet "ears" to listen anytime you need to get it all out.
I admire your positive outlook and agree wholeheartedly that there is some comfort in making a more educated decision. There is so much to learn about this subject that we never thought would become so important to know! I am one of those who made the decision to do a bmx less than a month after diagnosis. In that complete out of body fog that envelopes us when we hear we have cancer. I do not regret my decision but I do feel knowing about, hearing (or reading) the experience of others and having time to contemplate your direction would certainly have been helpful in so many ways. Least of which is the feeling of having some control in a situation that has taken you and your life hostage!
Wishing you continued courage and strength.
Ellen
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Thanks Ellen,
I really can't wait until get all the test results. Feels like I'm on hold until I do. Haven't told my family yet, but now I will. I realized that they may think I'm hosting Thanksgiving this year. Better make sure everyone knows that ain't happenin' !
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annie
listen, hang in there. i just want to support you. this cancer stuff is just so darn hard and you never know if or when it will show up. take care of yourself....get the information and plan of treatment.
hugs
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Annie,
I have been through4 mets and each time it is a shock. Just come here and vent and ask for help! Once you know what your facing you will face this just pray if you have faith and wait, if you need to chat PM me. hugs and many kisses to you!
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Annie, I just wanted to let you know I'm sending you lots of hugs and support as you wait for your scan results. I'm so sorry you're going thru this. If you need to rant, go ahead girl. We're here for you.
Barb
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Thanks everyone. I told my sister last night. I found out she is going through some stuff too. Thankfully not cancer but needs some surgery. She was ready to cancel one of her appts to pick up DD from school on Thursday when I have my appointment with the breast surgeon. I told her no. Will find someone else.
I'm lucky to have family and you guys to vent to.
Off to get my scans....
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Annie, hope today isn't too awful.
Sending lots of ((((hugs))))
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Annie,
Thinking of you. Prayers for speedy results and a good plan to kick some cancer butt!
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Annie,
Thinking of you as you work through a treatment plan. I'm glad you have great family support and reach out for the unwavering support here as well. Be strong and know we are here.
Molly
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Hey Annie:
Just thinking of you. Big hugs and whatever strength I can send your way.
Adele
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Weird,
I posted an update a few hours ago and its not here.
Got the CT/PET results. The good news is no spread to other organs. I'm very thankful for that. One lymph node in the supraclavicular region lit up slightly. So I'm going for an MRI next week since the CT didn't show it clearly. They also want to take a closer look at the 'good' breast with the MRI since I have areas of dense tissue and they don't want to miss anything.
The node may be biopsied prior to mastectomy if they can get to it. So I'm taking a breather for a couple of days to clear my head.
Thanks everyone for the well wishes.
Annie
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Thinking of you and hoping the news from your scans continues to be positive. Scary stuff regardless - you are in my thoughts. I had a local recurrence back in 2007 and I still remember how awful it was. Anytime you get the news that your cancer is back is life altering. Hugs to you.
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Annie, so glad to hear that things from the scans look good. Thanks for letting us know.
Hope they get more of an idea what is happening with that node from the MRI. Sounds as though they are being good and thorough.
Look after yourself, and hang in.
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Annie--I was just diagnosed for the third time. It hit me so hard--I was not prepared for it. My signature is from my first bout, then 14 months later I was diagnosed again. I had a lumpectomy first, and then with my recurrence I had a bilateral mastectomy 18 months ago. Still I had 2 new lumps form on my chest wall. Had them out 10/26 and they were cancerous.
But my onc has a plan, The plan includes radiation, which I had after my first chemo, but not the second. He says no chemo at this time, but he's going to have to explain that to me. And I am getting a second opinion.
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Annie:
No words of wisdom, just want to let you know I can appreciate and feel for all that you are going through right now, and I hope it all turns out to be nothing with the node. Big sigh of relief all the organs were good. Keep us posted and know that you are in all of our thoughts.
Linda
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Camazur,
Thanks for sharing your story. You must be so pissed about a 2nd recurrence. I know I'm pissed about my first. Please keep me posted on how you are doing and what your plan of attack is.
Linda, Kerry, and Nancy - thanks for your kind notes.
Have an MRI tomorrow to take a closer look at the node and my right breast. Once I get those results I'll know if I'm recommended for uni or bi lateral. I'm leaning towards bi-lateral anyway. It will also help them determine chemo or not. I'm also expecting my oncotype score sometime this week.
I sort of took a few days of trying not to focus so much on it and it helped a lot.
I also realized that I made a typo re: the node. It is infraclavicular not supraclavicular which is better. I did have one bad day this week worrying about the node being above the collarbone but I'm doing better now.
Hang in there everyone,
Annie
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I too just received a diagnosis of a local DCIS recurrence - 10 years after original IDC diagnosis, which was treated with chemo, rad, tamoxifen. Dr's aren't sure if it's true recurrence since it's at the same location or a new primary because the characteristics are different from my primary (better prognosis), but I've been told those characteristics can also change over time. Anyway, I'm debating between a BMX (also had atypical lobular hyperplasia) in other breast, or participating in a clinical trial to investigate partial breast re-irradiation after a second lumpectomy and lots of monitoring. I'm considered a good candidate for the radiation being successful (small tumor, many years since primary, low grade tumor), but am also considered high risk (young, dense tissues, potential family history but BRCA neg). I am completely torn between wanting to be rid of the risk of additional recurrences and wanting to go the route of breast conservation given that many women have chronic issues following MX and the few, if any, reconstruction options seem unacceptable for a previously-irradiated, slender athlete who spends a lot of time in bathing suits for various water sports (surf, windsurf, waterski, triathlon). I have no idea how to make such a drastic decision, but at least I have a bit of time since the BS did a lumpectomy at the same time as the excisional biopsy of what turned out to be the hyperplasia area. I've done a ton of research and talking to people and know it has to be a personal decision, but I feel completely stuck.
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Take two-
It is so difficult to make these decisions isn't it. Having options is great but I'm finding it overwhelming. I'm one of those people who tends to obsess over my options when making decisions but sometimes I think we just need to go with our gut.
I checked out some of the threads for women who chose not to do reconstruction. If you haven't read any of those, they might be helpful to you.
Best of luck with all of your decisions,
Annie
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Take two,
I just finished reading your post and thought I would respond. My first diagnosis was in 2003 and my treatment consisted of a masectomy and reconstruction (dcis with 2mm micro invasion grade 3 er/pr-). In August I had a similar situation to yours and the doctor is not sure if it is a recurrence or new primary as it is grade 1, weakly er+ and her2+. This recurrence was in my reconstructed breast and surrounded by healthy breast tissue. Unfortunately, masectomy does not totally take away your chance of recurrence but the reconstruction did make it very easy to feel.
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Kadyann,
What kind of reconstruction did you have? One of my concerns about recon is whether it will make finding another recurrence more difficult. What was it about your recon that made it easy to feel?
Thanks,
Annie
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Annie,
I had a latissimus dorsi flap (back muscle) with a silicone implant. Since the implant is behind the muscle it just pushed everything forward. The lump felt like a grain of rice and was less than a cm. My ps was sure it was fat necrosis but wasn't so lucky. I think it would be very rare if reconstruction hid a recurrence.
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that is really scary - what is your treatment plan - i had a masectomy with reconstruction
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My treatment plan is 6 cycle of TCH followed by herceptin alone until the end of the year. There is also talk of some hormone therapy since I am weakly er+ (14%). It is certainly a real kick in the gut to have to deal with this again, especially after getting past the magical 5 year mark. I just finished treatment #3 today so half way done with the hard stuff.
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Kadyann -
I hear you about thinking you are all clear. After 5 years I did feel a whole lot better mentally and thought I was done with this Congrats on being 1/2 way through the TCH. Hang in there.
Annie
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Annie,
how did you find your recurrence? Right now I am dealing with things but I am afraid that once treatment is done and it is just a waiting game that I will not be doing so well.
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I was originally diagnosed in 5/2006 wth IDC (Stage 2, HER@neu+++, estogen +, and pregesterone -) in left breast. Had lumpectomy (and sentinal node biopsy = negative), radiation via Mammosite, 4 treatments of chemo (Adriamycin and Cytoxan), Herceptin for a year and then Arimidex for 4-1/2 years. Found out recently (11/2010) that I have a regional recurrence to left axillary (armpit), left subpectoral region, and the left supraclavicular region. There is also some suspicious action in and around my thyroid, but he's going to ultrasound that "later." Had first of six planned chemo treatments yesterday (Taxol and Herceptin), more Herceptin until I've had 6 months total, followed by external radiation, and then Tykerb (don't remember for how long), and Aromasin for 5 years.
Yes, I was surprised when I found out that I had a recurrence, but I'm still Stage 2 (no distant metasteses) so I'm happy. My doctor said Taxol will be easier to take than the Adriamycin and Cytoxan was the first time, and I'm hoping that holds true.
I asked my doctor recently why he hasn't brought up a mastectomy, and he said, in so many words, that was the least of my worries. I guess he meant because it was going elsewhere, which is more problematic.
All you can do to keep on keepin' on, pray to the good Lord, and hope for the best. I don't know who wrote this, but I love it:
"When you come to the edge of all the light you have known, and are about to step into the darkness, FAITH is knowing one of two things will happen . . . There will be something to stand on, or you will be taught how to fly."
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Hi Annie
I was diagnosed with a recurrence 11 days ago. Pathology report suggests IBC ( dx 2005) that has metastasised to the lymph nodes in the throat. This time however I am HER11 + This has come like a thief in the night and I am unsure about what to do.
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Irish and Twiggers,
I'm so sorry both of you are dealing with this situation.
Irish - if they haven't seen more cancer in the breast, I'm guessing chemo is the most important thing to do first. Your onc may suggesst it down the line a bit.
Twiggers - what are your next steps? Are you set up for any scans? Will they do surgery to remove the nodes? Herceptin will likely be in your treatment plan. It's been a good drug for a lot of women here.
I wish you both the best. Let's keep each other posted.
Annie
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Kadyann,
I just saw your note.
I was due for my routine f/u mammo, but about 10 days before when I did my monthly SBE, I felt a large flat hard area that I hadn't noticed before. I had them pay special attention there during the mammo. They saw something and follow up with an ultrasound guided biopsy.
Ninap - Finally have surgery scheduled - 12/2. Going with BMX. Still deciding between implants and no recon. Will make my mind up by tomorrow and call PS office so they can do pre-cert if I go for the implants. They found a lymph node in the infraclavicular area that is suspicious on a PET scan but they can't get a good look at it with any of the other scans (CT, MRI, ultrasound) and probably won't be able to get to it during surgery. I may ask for another if onc recommends chemo for it to make sure it wasn't a false positive.
Annie
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Annie62:
As I mentioned in my earlier post, I had my first chemo (Taxol and Herceptin) last Friday (11/19/10). Saturday morning I started experiencing lower pelvic pain, which quickly morphed into horrible aching and shooting pains into my lower back, legs, and feet. I was wondering, is this the bone pain or the neuropathy I was told to expect? Per my oncologists' nurse, it was bone pain and she said it would last a few days. Good Lord, it was awful, but as she said, it started diminishing on Wednesday, and today I am feeling ok. I had some Percocet on hand, which didn't help, so I will definitely ask for something stronger for the next go-round!
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