Posted on: Dec 5, 2017 11:04PM
So far I'm 3 for 3.. if they biopsy a bump.. they end up cutting out the bump .. and its all been for different reasons . first two surgeries same surgeon, went through the areola no scars, still have feeling. 3rd LX, different surgeon , 2in scar closer to arm..around 10 o clock , still numb and painful ( odd combo I know) . I dont actually care about the scar itself.. but 3 surgeries in and if I already had 2 other 2 inch scars .. it'd look like I had dated Wolverine. When they suggest another biopsy do I just say " nah.. lets just see what happens" ? When do I throw in the towel and go for a PBMX? after the 5th LX? 9th?
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Posts 1 - 25 (25 total)
Dec 10, 2017 11:56AM leaf wrote:
Its so hard to know when to take the 'plunge' into PBMs. I've had IIRC 4 biopsies, and by the end of this coming Jan, 2 surgical excisions. If they find invasive in Jan, then I'll be really tempted to throw in the towel and go for PBMs, or at least get a good consult with plastics. (I have some other medical issues which could affect healing, and I am pretty hesitant due to some reports of chronic pain, and lymphedema.) Of course, I'd have to find a surgeon to do this too. My droopy breasts don't resemble Wolverine bites, and I don't really care what they look like, but I do care about function and pain.
Its so hard to make these decisions. My heart goes out to you.
Dec 27, 2017 10:49PM HeatherJeanne wrote:
So far I had 5 biopsies and 1 lumpectomy in a 2-3 month period. I was ready to PBM, but the surgeon pointed out that they only saw a small sample of LCIS in the first biopsy. No other biopsies/lumpectomy had any further LCIS. That was last year. Went through my yearly check up and call back this year and got the all clear after waiting 6 weeks for the call back appointment. When I went back the tech remembered me from the previous year because my case was so odd.
I understand what you mean about wolverine, my scars look like planets orbiting the nipple/sun. One day it may be the inspiration for a tattoo.
I decided to make a decision about PBM after the holidays. The biopsies suck, but for me the anxiety is worse. I started having panic attacks. I figured out that at least 3 months of the year I was worrying about what would happen at the next screening. On the other hand, BPM is no picnic either. I keep trying to remember that I have the luxuries of choice and time.
I am interested to know what you decide
Dec 29, 2017 06:47AM leaf wrote:
The surgeon who will be doing my breast excision in Jan 2018 said she was going to bring my case up to the tumor board because they detected my 'ALH verging on LCIS' by MRI about 5 years after I finished taking tamoxifen for 5 years. She wants to get a feeling if there are 'more options'.
Dec 31, 2017 06:54AM Mandycat wrote:
I had the pleomorphic LCIS with a small micro invasion. So far I just had a lumpectomy with short course of radiation. I presume I still have other areas of LCIS. Everyone on my father's side died of breast cancer. I haven't done the PBMx yet because it didn't seem to make any difference in my family. Those who got mastectomies died and those who didn't died. All from breast cancer. I'm the first to have radiation. I figure I will get it again but in the meantime trying to have fun and accomplish some lifetime goals. I will go for my first follow imaging in Marc
Jan 2, 2018 11:56PM panthrah wrote:
thank you guys for replying. This is not something that Ill be deciding in the next week or anything . being that its a choice and can be planned .. almost makes it harder for me. trying to figure out when the downtime would fit into life. so no crazy decisions will be made without through thought and discussion . Im a runner, roller derby coach, and Im part of the 501st star wars costuming group...down time is not something I have a lot of
Jan 11, 2018 02:41PM LL99LL wrote:
Thanks for your post, panthrah. I haven't gone through as much as you have, just 3 core needle biopsies done simultaneously in October. LCIS was found in one location. The two surgeons I've spoken to and my MO all think mastectomy is overkill, though the surgeon I chose is willing to do it if I really want to. My tolerance for risk is quite low. According to the Tyrer-Cuzick/IBIS risk calculator, I have a 59% lifetime risk of breast cancer and I'm not comfortable with how high that number is. I understand Mx and reconstruction are major undertakings. But I know too many people, including family members, who weren't diagnosed until their breast cancer was already invasive and they went on to have lymphedema and various short and long term effects from chemo & radiation (significant skin burning, long-term impaired lung function, daily nerve pain continuing years after mastectomy...)
If I do PBM, my surgeon will do sentinel node biopsy and there'd be some lymphedema risk, but much lower than if I waited and then got invasive cancer and needed axillary nodes to be dealt with. My surgeon also said that nerve pain and lymphedema are much more likely if radiation is needed, another reason to do Mx now rather than later.
My surgeon would rather do a needle-guided re-excision of the LCIS area and see if we find anything else on the pathology report. I decided this week to go with that for now, but I'm realizing I'm not at peace with the decision. I have a gnawing feeling that even if the re-excision pathology report doesn't show any more issues, I'm going to want PBM, so maybe I should just go ahead and do it now. If I don't do it now and I get cancer in a year, or 5 or 10 or 20, I'm going to be *really* pissed that I didn't do PBM.
Sorry for the long post; thanks for reading
Jan 20, 2018 07:53PM - edited Jan 20, 2018 07:55PM by OG56
in 2008 my mammogram showed a possible carcinoma it was IDC and at that time they found pleomorphic lcis all in the right breast. Between 2008 and 2016 I had five excisional biopsies and all were negative until 2016 when it showed up with ILC. I took Arimidex for 5 years and was off for 3 years before cancer showed up again. I now have had a BMX with reconstruction and then aromasin for five years.. I am still happy that I did CLOSE observation and did not do a BMX immediately after they found pleomorphic lcis.
Jan 23, 2018 09:26AM NicolaSue wrote:
To my thinking to have PBM you would have to be 100% comfortable with it. For me I'm not and although it wasn't strongly advocated I was told I wouldn't be denied a PBM if I really wanted it.
Jan 23, 2018 10:03AM MelissaDallas wrote:
I am always bothered by the fact that this board seems to be heavily tilted towards the smallhandful of women who stay here and seem to be the outliers who choose PBX, when I believe in the "real world" few women choose it and the poor job of evaluating "true" risk factor influences and unduly frightens newly diagnosed women. Same thing for the anti AI & Rads threads.
Jan 25, 2018 07:34AM leaf wrote:
MellissaDallas is correct (again).
In this study, 208 of 5964 LCIS patients opted for PBMs (So in this study about 3.5% of LCIS patients opted for BPM.) (This is from the SEER database, which is why they were able to get such a big number of cases.)
Of the 5964 cases included in the analysis, 208 cases underwent bilateral mastectomy and 5756 cases underwent partial mastectomy alone. The 1-, 5- and 10-year estimated overall survival rates were 99.7%, 96.7% and 91.7%, respectively. Univariate and multivariate proportional hazards regression (Cox) analyses showed no significant difference between the risk of all-cause mortality in the bilateral mastectomy group compared with the partial mastectomy group (HR = 1.106, 95% confidence interval [CI] 0.350-3.500, P = 0.86) https://www.ncbi.nlm.nih.gov/pubmed/28646773
Jan 25, 2018 02:17PM light1candle wrote:
I'd like to chime in here to say that these are very hard decisions to make, in light of all the unknowns surrounding LCIS. For some women, tamoxifen or AI's are not recommended, which basically leaves us with the increased surveillance or PBM options.
In my case I was diagnosed with LCIS last summer, classic type though with some type B (more atypical) cells, as well as ALH, papilloma, & radial scar -- the typical "busy breast" scenario. I struggled with the decision about taking the anti-hormonal drugs, but after consultations with several docs, it was decided that I was not a good candidate for tamoxifen (I have blood clot issues) or the AI's (I have inflammatory degenerative arthritis already, as well, as high trigylcerides, and early cataracts, all areas that AI's can impact negatively) and my docs felt that it was important to "first, do no harm". The breast center calculated my risk of bc as over 50% in the next 10 yrs, though I take that number with a grain of salt (thanks, leaf!). It was my rheumatologist who asked if I had considered a bi-lateral mastectomy, followed by my second-opinion breast surgeon. My own breast surgeon is much more conservative, though I plan to broach the subject at my next appointment. I had read studies that said PBM is rarely indicated for LCIS and that it does not increase overall length of survival. But, honestly, I am afraid of the breast cancer treatments, if I should ever develop cancer. Anti-hormonals are one of the main weapons in the arsenal to treat bc, and I already know that they pose some special risks for me. I have lupus (SLE) and radiation therapy may not (or may, depending on the study) be recommended, due to reports of adverse effects for some lupus patients. I also have kidney disease which can affect which chemo drugs and at what dosages that can be used to fight bc. All in all, I would really rather avoid bc altogether than to have to deal with the possible fallout from the treatments.
So, in the meanwhile, I have opted for increased surveillance. After my stereotactic needle biopsy & excisional biopsy last summer, I had my first ever breast MRI about a month ago. (Turns out I developed hives from the gadolinium contrast, so if I have future MRI's I may need to be pre-treated with anti-histamines or some such.) The MRI found two lesions in my "good" breast, one of which was concerning enough to give me a bi-rads 0 score, and a recommendation for a second look targeted US. The US technician could not find said lesion, so the radiologist just said to come back in 6 mos. for another targeted ultrasound. (That did not inspire a lot of confidence on my part!) While I am not a *huge* worrywart, I *am* considering PBM, not because I believe it would increase my overall survival, but for quality of life reasons. I might also mention, that I think the overall lifetime cost of the surgery may be less than a lifetime of heightened surveillance. I will be going on Medicare in the next couple of years, and my rheumatologist said good luck getting Medicare to pay for the MRI's.
There seem to be no absolutes when it comes to information about LCIS and its treatments. It is my hope that the medical establishment will respectfully affirm each woman's choice, knowing that these are difficult and very personal decisions to make.
Jan 27, 2018 09:00AM leaf wrote:
I will be going on Medicare in the next couple of years, and my rheumatologist said good luck getting Medicare to pay for the MRI's.
This does concern me, since I, too, will be on Medical in the next many years.
It is my hope that the medical establishment will respectfully affirm each woman's choice, knowing that these are difficult and very personal decisions to make.
With the addition of insurance companies and Medicare, Hear, hear!
Feb 12, 2018 02:08PM cyclegal wrote:
I think the point everyone can agree with is that whether to PBM is a very personal decision. Some people make decisions based on data while others listen more to emotion; some focus on mortality rates while others put more emphasis on quality of life; some people have a high tolerance for risk while others become prisoners to anxiety; and on and on... Perhaps this board seems to retain those who have chosen PBM is because we are indeed a small group and want to have our voice heard so that in case others are feeling how we did before we chose to have the surgery, they can hear from people on both sides and make their own personal decision. I think most patients hear from their doctors that PBM is not the common recommendation, that it's overkill, that most patients choose to monitor, that invasive cancer can be detected early, that treatments are effective these days, that taking drugs can greatly reduce their risk, etc., but they don't hear from those who chose to go against the grain, and this board gives them an avenue to do so. I respect every person's decision and fully believe in researching all options to decide what is best for each person.
As for the original question, I had two biopsies - one needle and one excisional - before I made my choice, and when my BS was going over the pathology report from the mastectomies, I asked what some of the things were (other than the widespread LCIS found throughout an entire half of my breast), and she responded by telling me they were things that would have led to more biopsies. How many you can tolerate is, again, a personal decision, but I think when we are done, we know.
Feb 12, 2018 03:18PM MelissaDallas wrote:
Of course it is a very personal decision. The reason I said I am bothered by it is because I was just recovering from surgery for ovarian cancer when I was diagnosed with LCIS and wound up her on the discussion boards. Based on what I was seeing on the discussion boards I thought pretty much everyone had a mastectomy for it and I was tremendously distressed - so yes, we do influence other women and their decisions. I had been very very ill for six months and didn't think I could handle much more.
"Perhaps this board seems to retain those who have chosen PBM is because we are indeed a small group and want to have our voice heard so that in case others are feeling how we did before we chose to have the surgery, they can hear from people on both sides and make their own personal decision." - But sadly it doesn't retain very many who just choose follow-up so people who are making that choice are getting very little feedback from these boards. If I just wanted to hear what the doctor said I wouldn't be here either.
Feb 13, 2018 09:55AM NicolaSue wrote:
I'm a follow-up no mastectomy lady! Here in the UK they try to go with surveillance only for LCIS. I'm just at the one year point now. Just waiting for feedback from the mammos.
Feb 13, 2018 09:58AM NicolaSue wrote:
PS I also think the decision is based on how much other 'trauma' we've had. For example I've had 6 cesareans and each one was extremely difficult so for me so while I found the biopsies very difficult (especially the excision one) I just kept relating it to the C Sections and they were worse.
Feb 13, 2018 07:36PM panthrah wrote:
the follow up approach has yet to work for me- pretty much my new norm is if they scan me ( mri, mammo, manual, u/s) I get poked or cut open ... for the last 4 years. just went in for the manual check up after the 3rd lx.. she aspirated 2 cysts in the office ( one manual..which i dont recommend ) and then said I have kevlar boobs hehehe
Feb 20, 2018 12:41AM - edited Feb 20, 2018 12:41AM by Corah
I had my first mammogram in August 2016 & it resulted in LCIS and very busy and complicated breast diagnosis. I had a biopsy & lumpectomy in November 2016.
I did all the reading and research on LCIS and finally got myself to the point of forgetting all about it, as its not considered cancer, your just in a high risk bracke. My life returned to normal for a few months... I was still doing my self checks, its just now they are alot lumpier than ever now because of scar tissue.
In July of 2017, I felt or what I thought I felt, was a lump away from the original lumpectomy site. Then comes the big self discussion of "am I over reacting" - "am I just looking for lumps" - "am I just paranoid & reading more into it". The result of all this was another ultrasound, a lump discovered (not the one I thought I felt either) another biopsy, another infuriating few weeks of waiting for pathology reports, all ending in benign results...THANK GOODNESS... But that fibro lump took only 8 months to grow....
I do my self examinations monthly & again the last few times there is something that doesnt feel right. I have felt a lump on my breast bone in the middle of my cleavage that is painful when pressed. I can already guess what will happen now, doctors visits, ultrasound, mammogram, MRI, biopsy, huge amount of stress waiting for results and then get the all clear...
I think this is what living with LCIS will be all about. constant monitoring, investigating, poking & prodding, needling and slicing...
its the mental energy you have to expel during all this, that I think is the hardest part...
Feb 23, 2018 10:40AM NicolaSue wrote:
Corah, yes it's very difficult. I'm one year after my LCIS diagnosis and excision biopsy and just had the 1 year follow up checks. They said it would be up to three weeks to get the results. It's been 2 1/2 now and it is driving me insane. It is so hard to be calm in the face of LCIS.
Mar 2, 2018 03:36PM - edited Mar 2, 2018 03:37PM by ESORmarie
I had a mammogram March 2017 and was diagnosed with C50.512 Malignant neoplasm of lower-outer quadrant of left female breast and underwent 3 surgeries within a short time followed with 20 sessions radiation My Oncologist prescribed Medication Anastrozole a class of medications called nonsteroidal aromatase inhibitors followed with infusion Zometa® 4 mg/5 ml concentrate solution
Mar 29, 2018 10:07PM Lea7777 wrote:
Thank you for the comment about Medicare being reluctant to pay for MRIs. Our decisions should not be based on finances, but in reality, that's a consideration. One more thing to think about in deciding between PBM or 30-some years of surveillance.
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