Lumpectomy Lounge....let's talk!
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Brightness - Got my path reports 1 wk post surgery - margins clear & nothing in sentinel node - then waited about another 10 or so business days for results of Oncotype - These showed minimal if any benefit from chemo, for which I was very glad. Then proceeded with Rads (16 "regular" + 4 "boosts" to tumor bed). Made it through rads with just a little bit of radiation dermatitis & nipple irritation. Now, onto AIs. Wishing you well on this journey.
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Celia, with a tumor <1cm, node-neg and only Grade 1, I’m surprised they even bothered to run an Oncotype.
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I had my follow up appointment yesterday. The BS basically released me and I won't see her again until February 2018. The bad news is my pathology still isn't complete. The good new is why it's not ready. I feel like my numbers don't fit at all, but I'll try to explain this so I can hopefully get some good input...
My initial mammo and US was done locally. They showed one suspicious spot, so my gyn sent me to a hospital in the city for an excisional biopsy and said basically it's no big deal. They'll cut it out through the needle and life will go on as before. When I go at to the hospital, they did an US and found 5 spots, 2 of which were suspicious, the other three were cysts. They biopsied the 2 sites and found 1 was a papilloma and the other IDC 7mm. They sent me to an MRI which showed the tumor to be 1.2cm. At this point I saw an MO locally and she suggested I consult with a teaching hospital in the city since I wasn't super pleased with the communication at the first hospital. I met with their team and received another US and mammo which showed the tumor at 8mm. They said the site was possibly inflamed during the MRI which would explain the higher number.
The good news from the lumpectomy is I had clear margins and no node involvement. She took 5 nodes though because they stuck together (is that even a thing) which explains my cording I suppose. She gave me an rx for PT to help with that.
The reason my pathology is taking so long is that my tumor only measured 3mm. They are looking over my old slides and scans and they believe my tumor may actually have been surrounded by a cyst which is why it appeared larger than it actually was. My MO said it's not likely the needle biopsy took 4mm, thus this explanation makes sense. She said after the biopsy the cyst probably filled with blood which would explain the apparent increase in size. Of course, they want to be sure and that's why it's taking so long. The pathologist and my MO have both been looking at it and researching this possibility. It may take another week before I know for sure.
If the tumor is less than 5mm, the MO said the need for chemo probably won't outweigh the risks, thus I probabaly won't need it. She said that although they wouldn't have considered me her2 positive based in the ISH test done by the other hospital, since they did go on and do the fish analysis which showed me as positive, they can't overlook that, thus if the tumor is determined to be closer to 1cm, chemo is warranted, although it would be one of the weaker options (taxol?). She said even if the tumor is determined to be 7mm, we can discuss benefits vs potential risks, but for now they just want to be sure we have an accurate size.
So my take away from this is there is still hope I won't need chemo and I'm so thankful my local MO suggested I consult with the teaching hospital. I like having an entire team of doctors looking at my situation. The BS I met with at the first hospital was leaning toward a mastectomy and TCH and said I didn't need to see an MO until after my surgery. She seemed very smart, but I didn't like her cavalier attitude about cutting off my breast, nor did I like the apparent lack of communication between her and the PS at their facility. I'm lucky to have been a medical social worker years ago so my daughter called an old friend of mine who still works with cancer patients and asked for her opinion. She suggested I see the local MO, who is highly recommended, which led me to the doctor said I'm seeing now.
I'm so thankful for this site. I may not have asked the right questions and may have just gone with the first BS recommendations if I hadn't found you.
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Oh, and also the MO said they're looking at the original slides to see if the cancer is cored or scattered (I'm a bit confused in that part) because if it's scattered that also decreases the likely need for chemo. At least I think that's what she said. I was trying not to cry (that's what I do these days). My daughter was writing stuff down,mbut I haven't reviewed her notes yet this morning
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Brightness, we're glad you found us, too. Most of us know absolutely nothing helpful about BC when we are diagnosed. And certainly we don't know what questions to ask to elicit the information necessary to make informed decisions. That is one of the biggest pluses of this site. Sounds like you have a lot of information but it hasn't formed a cohesive conclusion yet. Hooray that you have confidence in your team! Fingers crossed for no chemo!
HUGS!
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Hello, all!
Checking in after my post-op visit today! I was able to confirm clear nodes & clean margins so that was a blessing! Still stuck with this drain tube for a while longer, but it beats getting a seroma! Feeling optimistic about my first oncology visit next Thursday! Sending love & light to you all!
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Brightness, so glad to hear that you may get to avoid chemo! I had a similar "change in size" between the US and the MRI. US originally showed 8mm, and then MRI said 15mm. Just got final surgical pathology report today which confirmed the original 8mm size. The comment about swelling after the needle biopsy makes sense. Best of luck!
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Congratulations, Fleur, on clean and clear! I didn't have a drain (but got a seroma!). Good luck with the oncologist next week. Isn't it great to check off steps in this unasked-for adventure?
MJ
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Fleur, it sounds like things are moving in a good direction for you. Well, as good as BC can be anyway. Thank goodness for each positive in this process.
I went ahead and made an appointment with the local RO today. I'll have to cancel/postpone it if it turns out I need chemo, but he's getting ready to retire and I wanted to get in with him before he stops taking new patients.
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>>...because they stuck together (is that even a thing)<<
Yup, it is. That's why, although only 2 of my nodes were sentinels (the only two that "lit up"), there were two non-sentinels stuck to them (my BS called them "hitchhikers") that had to be removed (there was no way to leave them in place), so I had a total of 4 nodes out.
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I had 3 nodes removed and 2 hangers-on. My new MO here in Spokane said that no matter how they were removed or how many were intended to be removed, I had 5 and that means an axilliary dissection and means I am at a high risk for LE. My BS never ever said that to me. I'm rather upset that she didn't.
HUGS!
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Peggy - do you know how many nodes constitutes an axillary dissection? My RO told me I'm at low risk for LE - hope she's right!
MJ
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MJ, I believe it is 4 or more. I know it's more than 3.
HUGS!
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Ugh, so I need to be concerned about lymphodema? And I never even read up on axillary dissection since no one ever said those words to me and I didn't think that applied to me.
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Chi Sandy - I have looked under lung mets with no luck so I thought I'd post here. I finally moved from partial mastectomy and SLB through a 2 months diagnostic waiting period resulting in an oncotype of 11, a 1.5 cm IDC and no spread of cancer to node or margins. My ER was 100% and PR 5%, and HER receptor negative. Genetic testing was all negative as well.Now I thought I was entering a new phase in this "journey" and had my CT simulation. The CT picked up an incidental finding of a 7.5 "inflamation" on the upper/outer portion of my right lung . I have had a linmgering cough since mid May and all doctors were aware of this. The barking cough changed just before and after surgery to produce phlegm and acid reflux feeling. I have been on an acid reducedr for 2 weeks. Now I have a CT scan of my lungs set for tomorrow & am serching frantically for what the inflamation could be if not CANCER.
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Barbmack - I too have osteoporosis and started the injections (Prolia) in May of 2016. It's really great not to have to remember to take another pill. A very experienced nurse encouraged me to take the shot in the belly instead of my arm. Such a great suggestion! I don't even feel the injection. I've now had a total of 3 injections and fortunately have not had any SEs. I have a DexaScan in December. Hoping to see some improvement in bone density. Also, my MO told me that Prolia reduces the chance of reoccurance of hormone positive BC by 3-4%. Added benefit! Final info on Prolia if you end up getting the shots...if your insurance is not government sponsored (Medicare or a subsidized ACA plan), Glaxo has a consumer program that will pay up to $1500/year for your injections. My injections are running ~ $1600 each, so the program is very valuable. T
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Peggy - My BS never told me I was at risk for LE either. I had 2 removed with three hitchikers - total of 5
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Sue, my BS made it sound like the 2 hangers on didn't count since she wasn't taking them, they just showed up.. My MO here straightened me out. Swell isn't it?
Hugs!
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My BS’ NP said that SNB puts one at lower risk than does a full ALND, but that risk could still be anywhere from 2-20%. My LE doc usually doesn’t even order prophylactic compression for those who have had “only” 4 nodes removed—and he’s a founder of LANA, on the board of LEaRN and an advisor for Step Up-Speak Out. My path reports all said SNB, not axillary dissection. As I understand it, the latter is the removal of at least an entire “level” of nodes without regard to which are sentinels, and is usually done if there’s evidence of nodal involvement before or during surgery. Before the concept of the “sentinel” node and advent of SNB, ALND was the gold standard for any surgery for invasive bc. (SNB is now used for other cancers as well, such as in situ or stage I melanoma).
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queenofwand... thanks for your encouragement. My lumpectomy is tomorrow.. my port was put in yesterday. I was awake for that but on xannax which kept me calm. I'm pretty sore from that today... I'm sure my weekend is going to be pretty low key. I am hoping that that everything goes smoothly. I'll keep you posted!
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Goodness I'm thankful for access to such smart women!
For now, my underarm hurts, but isn't unbearable. Hopefully I'll connect with a PT with lymph system knowledge who can help me resolve the cording and the (new) lump at the incision site and I can put this part of the journey behind me.
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Brightness, you sure have had a ride! I also have gone from one clinic or doctor to another, and it is amazing what differences in measurement show up in different places, as well as the differences in recommendations. I had an increase from 0.5cm on ultrasound to 1.1 on MRI post-biopsy. They suggested the same thing, inflammation after the biopsy, and mine was also in a cyst. But they told me they still had to go with the larger measurement. Still kept me in the same category, though.
The saddest thing was hearing that after my first MRI, which showed 4 new spots, all of which they recommended biopsies for, my surgeon and 3 radiologists associated with her only recommended biopsy of 1 of those spots, which 2 subsequent surgeons I've seen and who reviewed my records agreed with. That MRI-guided biopsy was AWFUL, bruising across 3/4 of my breast and still slightly discolored after a month. The saddest thing is that even that spot showed very low vascularity and was actually not very suspicious at all, according to the radiologists. I strongly suspect that, if the first place hadn't made that recommendation (which I've now learned is renowned in our area for over-recommending biopsies), I probably wouldn't have had even that one biopsy. It was not only quite distressing, but that biopsy alone cost us quite a bit, even after insurance.
Good luck!
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I had levels l and ll axillary nodes removed due to two positive nodes. I have not had any issues with LE or swelling in my arm. I also wanted to let you all know that my mom passed away Saturday. It has been a sad few days even though she was suffering greatly from end stage Alzheimers Disease.
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I'm so sorry about your Mom, Molly. I can tell you from my own experience that, with time, you will be able to conjure up all the good memories and smile. This is a good time to surround yourself with supportive family and friends.
(((Hugs)))
MJ
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Molly, my heart is with you in the loss of your mother. It's so damned hard.
And like you, I've had no trouble with my 5 nodes gone either. Makes you wonder why some people have problems and some don't.
HUGS!
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Does anyone here have any thoughts as to why letrozole (Femara) seems to be the usual AI combined with brand new drugs to combat hormone positive/HER2 negative metastatic BC? Think Ibrance and now a new drug called Kisqali is working for FDA approval. Wonder why anastrozole (Arimidex) and exemestane (Aromasin) are used in some of these combinations?
HUGS!
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Letrozole probably works better than the other two when combined with the biologics for Luminal A or B bone mets. Exemestane (Aromasin) is sometimes prescribed in tandem with everolimus (Afinitor) for liver mets, but it doesn’t always work as well and sometimes IV chemo is necessary afterwards. And both Aromasin & Afinitor are extremely expensive. (Ibrance is, too, but for non-Medicare/Medicaid patients there are discount or even free coupons—as well as grant programs for some Medicare patients who meet the low-income threshhold).
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I'm sure you're right, Sandy. It is just surprising since I consider letrozole and anastrozole sisters. And for non-met BC, seem to be used interchangeably.
HUGS!
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Saw my MO for my 6mo checkup. Other than a scheduling issue (they "forgot" I was there--7 min early-- and then tried to say I got there 40 min late. Yeah, the doctor heard about that and he was NOT happy!) Everything went well. He drew blood for something I forgot to ask about. I told him that the letrozole seemed to be working okay, other than the body aches--I am so stiff when I get up, I HAVE soak in the tub of the hottest water I can stand for about 45 min just to loosen up and function. He said, yep, that's letrozole. Foo. We discussed whether to change to another drug, but in the end I decided I'd rather stick with the devil I know. He did say he'll only keep me on it for 5 years, instead of 10, since my cancer was small and early. He said staying on the drug an additional 5 years would only give me about a 1% benefit, but would expose me to higher bone and cardiac risks. So, only 3.5 years to go!
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Poodles, glad for the good report! Boo hiss on them keeping you waiting and blaming you. ARGH! Now get that house sold!!
HUGS!
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