Anyone with a "Good" lumpectomy? Please.
Comments
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Just wanted to chime in and wish Labelle all the best tomorrow. Take some deep breaths and release as much stress as you can between now and then.
I also want to speak up on the issue of AIs. While I've only been on Femara for a month, I have had NO side effects whatsoever. I also know others who've done other AIs without any problems.
That's not to say that side effects don't occur, but for many of us they are a non-issue. Additionally, if you have problems with one you can switch to another. Please don't reject any of them until you've tried them. It's not as though you can't stop if they don't work out!
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Regarding Tamoxifen....register at the NCCN website and read the professional version (red logo) of the 2014 breast cancer treatment guidelines. Look for the page that SPECIFICALLY addresses tubular and mucinous breast cancer.Tubular and mucinous are USUALLY "favorable" rare cancers and have their own recommendations. Also read pages 100 and beyond, under the heading "Endocrine Therapy.". Don't forget to read the footnotes as well.
Since I also had mucinous, it was explained to me that by adding endocrine therapy, I would be reducing the chance of getting breast cancer in my other breast. I would also recommend the Oncotype DX test. The test should confirm your very low Grade 1 tumor and tell you by what percentage you would be reducing your chance of distant recurrence by doing endocrine therapy. That said, because you have great prognostics, you are faced with many choices.
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And if it turns out that anti-hormonals are the right route to take, don't be afraid of them. Most people really do okay. I did 5 years of Arimidex with no problems (it reduced my recurrence chance by 40%....so it was a definite 'yes' for me).
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God, you just look so familiar! I was at ARC in 77,78,79. But there was NO WAY i would have seen you in a math class! it's the one thing that held me back from getting my degree. I just say no to math!
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I have been on Tamoxifen for three years and, so far, no serious side effects. In fact, life is pretty darned good!
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Thanks for the support. We think everything went well yesterday. The surgeon ended up removing 6 nodes, 4 that turned blue and two that just "popped out" and he seemed pretty confident he got it all. He will call me with the pathology report Monday or Tuesday. Certainly hope he doesn't have to go back in. It was a very long day-we had to hit the road at 4 a.m and didn't make it home until 5 p.m. due to the distance to the breast center, a slow recovery time and a slower pharmacy. The pain isn't bad, got oxycodone but haven't taken anything but Tylenol so far, since the script might cause nausea and I'm already pretty nauseous. I don't think my body liked anesthesia. Anyway, I'm home well, albeit moving slowly and feeling a bit warn out , and my urine is now light blue as opposed to navy blue. They warned me about that, but dang!
Thanks again to all of you. I'll try to keep this one step at a time, recovering from surgery before worrying too much about the radiation and hormone therapies for now.
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Glad you are doing okay. One step at a time!
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Glad to hear all went well with the surgery. But sorry your day had to be as long as it was--bummer! Now just concentrate on healing and on positive thoughts in the present. The future will happen even if you don't think about it now. Berst, TG
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My surgeon called tonight with results of my pathology report. It was one of those good news/bad news things. The good new is the margins are clean and no more surgery is needed. My tumor was only 7 mm, less than we expected and it is all low grade tubular in nature. Yeah! The pathologist found 11 nodes to dissect (surgeon thought he'd only taken 6, but whatever) and found cancer in one of them. So that was bad news. Bumped me up to stage 2a status. The surgeon seemed rather surprised that any was found in the nodes and still agrees that having my ovaries removed would provide as much benefits as chemo. Given my low oncotype score of 11, I'm still hoping to avoid chemo and hoping the oncologist agrees with me and the surgeon despite node involvement. I was also hoping for minimal radiation (was actually considering not doing it at all, given the tubular nature of this cancer) but now facing the reality that radiation in its entirety will need to happen for me. Still, no more surgery due to clean margins was very good news!
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Sorry to hear about the node involvement. Have you read page 20 of the NCCN professional version (red logo) of the 2014 breast cancer treatment guidelines that specifically addresses mucinous and tubular breast cancer? Not sure how old you are, but many of us opted for chemical ovarian suppression rather than surgical ovarian removal. Later next month we are hoping that preliminary results of the SOFT and TEXT trials will be uunveiled at the 2014 San Antonio Breast Cancer Symposium. I strongly recommend you research those studies.
I wish you well!
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I have read it and know tubular cancers are different and allow me a bit more flexibility in treatment due to their generally very good prognosis. This was one reason the surgeon was very surprised there was any node involvement, the other being the relatively small size of my tumor. I've mostly been worried about over treatment up until this point.
Because I'm 51 and perimenopausal, chemical hormone suppression doesn't make a lot of sense. If I were younger, well, lots of things would be different. LOL.
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http://www.ncbi.nlm.nih.gov/pubmed/11167594
http://www.ncbi.nlm.nih.gov/pubmed/25060384Here's some encouraging studies for node positive tubular!
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labelle...I was premenopausal and 53 at diagnosis and chose chemical o/s... Why do you think it doesn't make sense?
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I agree that with our types of tumors we have to be very careful of over treatment. We also have less treatment evidence than for the more common types of breast cancer. That said, our risk of getting a second primary breast cancer is probably greater than a distant recurrence of our current breast cancers. So keep this in mind as well when you speak with your oncologist.
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My understanding is that the real advantage of chemical suppression is that it is reversible, an important consideration for younger gals who want to try to preserve their fertility, someday regain ovarian function to help protect against heart disease and osteoporosis. Not a concern for me as mine are on their way out anyway and won't be coming back no matter what I do. Surgical removal just gets it over and done with, is a simple laprascopic surgery, no monthly shots/chemicals, no worry about whether they are working or not. My hormone levels show I'm on the border between pre and post menopausal anyway. It also seems perimenopausal women have more problems with Tamoxifen (if I go that route) than either pre or post-menopausal women and Tamoxifen can increase the chance of ovarian cysts (painful and scary, but not serious) No ovaries, no benign cysts. Several models I've run show ovarian removal to be as effective as Tamoxifen which I'm trying to avoid and ovarian removal opens the door to AI therapy as an option.
Thanks for the links. I did read them and everything else on tubular breast cancer that I've been able to find. Due to the rare nature of this disease, I find most studies frustrating due to the small number of women studied in each. There really don't seem to be any big studies about tubular breast cancer.
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Labelle...for patients in their 50's...like you and I who are still premenopausal at diagnosis, the real advantage of chemical o/s is that it eases us into menopause. I became menopausal while taking lupron injections with few side effects. Make no mistake, I still had side effects from shutting down my ovaries, but nothing like some of the side effects that other sisters experienced. Perhaps you should try chemical o/s for a few months before deciding going the surgical route.
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There are very few studies on mucinous and tubular breast cancer because they are considered "favorable" histologies. That is changing because Sloan Kettering has just set up a rare breast cancer lab with brilliant researchers. Hopefully, down the road there will be more research to support clinical treatments. For now, we just have retrospective analysis.
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I will definitely have a lengthy discussion with the oncologist re: chemical ovarian suppression v ovarian removal by surgery, pros and cons, etc before doing anything, but I spent most of the summer dealing with hot flashes, night sweats, no period for 3 months (back again this month) and so on, so I think the worst may be over no matter what I do-I hope so. It was a sucky summer! Given the high estrogen receptor status of my cancer, I strongly believe something needs to happen in my ovary dept for sure.
And it would certainly be nice to have information from large studies. Even though these are rare types of breast cancer when you have one of them and you realize these specific types change statistics, possible proper treatment protocol and all that it would be great to have good, reliable information out there to help us make wise choices. I'm just not finding much of what I want: large scale long term studies comparing various treatments for "my" type of cancer specifically.
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labelle..I can't agree more with you....most of our evidence, for us rare sisters is based on the 2b Level. It sure would be nice for the level of evidence to be greater. Rest assured, you still have excellent prognostics....please keep us posted what your team recommends....might help future sisters down the path....good luck!!!
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I hope you don't mind if I follow your discussion and perhaps ask questions at times? I am newly diagnosed last night with tubular, and I am just trying to soak up as much info as possible on this rare type.
Thank you, Kat
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kat...please feel free to join in on any thread!😘
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Hi Labelle!
I had two lumpectomies (my margin did not clear with the first one) and I am also very happy that I went with that procedure. My cancer was DCIS and contained - I felt very lucky that it did not spread. My first thoughts are that I am happy I made it thru surgeries and rads; and I agree with the ladies who responded, I am not minizing the surgery at all but it was much less worse than I thought it would be! Is "much less worse" proper English?
I actually think the guide wire placement was worse than the surgery and recovery, and the wire placement only lasts like a minute.
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Well, I have a BA in English so I'm pretty sure "much less worse" is not proper English. However, the reason for language to exist is to aid in communication and "much less worse" communicates the idea quite nicely. My own surgery was much less worse than I'd thought it would be too. Which isn't to say or imply it was a pleasant experience!
Surgery was done on Nov. 13th. My SNB incision is healing nicely except for 3 stitches (? nylon stubble) at the bottom of the incision. I don't see my BS again until 12-23 but I'm pretty sure all my stitches are supposed to be of the dissolving sort. Anyway, this stubble of stitches (I think that's what they are) is driving my nuts. I'll show them to the RO on Monday and see what he says/ask him to remove them.
I still have stereo-strips over much of my breast incision. I don't know how they make those things, but they have way more stick than your average band-aid. From what I can see, that looks good too and seems to be healing nicely, but my whole breast is still somewhat swollen. I was told if I wanted PS to fill in any dent or dimple from the lumpectomy it is best done before radiation, but how am I supposed to know if I even want or need PS? I can't tell anything due to the bruising/swelling. Even though I know the BS took out a pretty good sized chunk of tissue, my lumpectomy breast remains larger than my other breast. Ugh!
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labelle you don't have to decide on PS before radiation. It can take a year for swelling to go down so how could you decide now anyway. I was glad I chose radiation after my lumpectomy. When my breast cancer returned in 2011 it was not in my radiated breast (or the other) so my consolation prize is I get to keep my breasts. ;-) I had lumpectomy in 08, just had fat grafting in April. Wore a prosthesis in between. Many ladies on these boards helped me find a great PS who used lipo to harvest belly fat and fill out my left breast (a lot of tissue had been removed). I'm happy with results. I also had breast implants BEFORE breast cancer so it was tricky surgery but it all worked out well.If I can give you any advice please PM me. Best wishes to you!
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Hello. After reading the posts I am very hopeful in my choice of a lumpectomy. I will have my surgery on the 11th of December, next week. Waiting has definitely been the hardest part. I was diagnosed on October 8th w/ IDC, which I found due to pain in my breast. The doctors have all told me that pain is uncommon in bc, so I guess that I am lucky. They are estimating the tumor to be less than 2 cm w/ no node involvement. I did have an MRI and 3d mammo that did not even detect the tumor that had already been found, however a sonogram did spot some dots that they suspected were DCIS. I had a vacuum assisted biopsy to check the dots, luckily it was negative. After the surgery I am scheduled to begin radiation. If there is node involvement chemo will be part of the plan, however I will keep my fingers crossed against that. Next week we will travel to Houston for the surgery, as the surgeon came highly recommended by our oncologist friend. We will stay for 3 days, to allow for recovery. The trip is 5.5 hours driving, which I have down, as this will be my 4th trip since the diagnosis. I am nervous, but ready to put this behind me. My children will be ready for me to come home also. I was very nervous about the biopsy too, which turned out to be a smooth , painless procedure. It is my hope this will be too
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Hi Labelle
Like you, I had some stitch 'stubble' on my breast at the end of the incision for lumpectomy - it drove me mad too but the breast nurse said it happens and she removed the stubble for me there and then - she was obviously trained as she donned gloves, plastic apron, mask, etc. I think if these sticking out stitches are left, they will eventually desolve but they are irritating and are easily dealt with. Don't forget to mention them at your next appointment.
Like Ronda said, it can take a long time for swelling to go down so I don't know how you would be expected to decide if you like the way your breast looks before the radiation. I think anyone's answer would be 'it looks beaten up!!!', so check that one again and ask your surgeon to clarify...
Hugs to everyone.
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I think any PS would prefer to work on a non-radiated breast. Fewer chances of SEs. Still a good PS can manage most radiated skin.
Mine didn't hesitate with nipple reconstruction. I waited about 15 months after rads to have surgery. Did have an infection around my stitches and tattooed area 3 weeks out from surgery. This was after being on antibiotics for 14 days and meticulous instruction and care on how to prevent infection. It resolved itself with no more problems. Did stir up my truncal LE, but that is a separate issue.
So surgery after radiation is more complicated. It takes a year or so for the breast to settle after a LX. The shape of mine now looks completely normal, 18 months after the final surgery. I'd think filling dimples could be done without waiting for the breast to settle though.
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Hello All,
I am a new addition to this sisterhood…i have stage 1 grade 2 BC.
It's been 16 days since my lumpectomy and 3 lymph nodes removed. Surgeon said radiation a must. Is there anything I can do in the meanwhile? I am wondering if there are any specific questions for the pathologist that any of you could recommend? It gets confusing. I see the oncologist Dec 23rd…likewise, what integral questions have you asked that assisted you?
There are so many, i am just hoping for the best and would like to narrow it down. I has been a roller coaster ride with shots of pain…i do get concerned with my healing-anything i seem to eat or drink makes my Left breast tingle. is that strange? abnormal?
From a gal who sees you all as her heroes and has the utmost confidence that we together will make it through…thank you for ANY advice & information! Good luck in all your stages…xox Live light, travel light, spread the light -be the light! XO
Fire above me, Earth below me, Fire Within me.
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hello Vixter, sometimes Sunday's are a little slow. I think you would enjoy talking to the newbie topics called just diagnosed. If you don't know how to navigate there just let me know. You also can go to recent post that's where you see people that are currently posting.. Please let me know if you need help. You will be hearing from the moderators soon since your new.
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Hi Vixter, and welcome to Breastcancer.org!
Besides Susug's excellent recommendations you can read the Breast Cancer 101 -- Breastcancer.org where you'll find amongst other helpful information, a list of questions to ask your doctor that may help you organise your next doctor's appointment.
Also the article Getting Your Pathology Report may help you understand and decide on a treatment plan together with your doctor.
We hope this helps!
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