Stage 1, grade 1 and pre-menopausal
Comments
-
Joy- I am so relieved for you! Congratulations!
0 -
Joy what a relief
0 -
Joy so glad it turned out to be a false alarm. But it brings all that uncertainty back when something like that happens to you. I have heard so many stories about imaging false positives and negatives. Underlines to me the importance of doing all I can to reduce my risk with the additional treatments. If something like that happens and it does not fit with the clinical scenario then it's definitely second opinion time!
Happy dance for you Joy ;D0 -
hello to all -
I am recently diagnosed (a month ago .. I think? Time flies when your having fun) and have had my lumpectomy already. Physically it wasnt that bad - mentally, well not so good! Like many others here I am in the medical field and am definetly feeling the double edged sword. I read my final pathology report before even my surgeon saw it and while the "final" came back with clear margins, the additional margins taken (3 out of 6) all had Atypical ductal hyperplasia. My surgeon feels that no additional surgery is warrented and that the planned on radiation will take care of any additional ADH. My concerns are that last years mammo was reported at "clear" and there has been no mention of microcalcifications or any thing else that would point to anything concerning. I am REALLY struggling with deciding if mastectomy should be considered....I know long term mortality is low and all that but I want to do everything to make the chance of recurrence with possibly having positive nodes next time as low as I can. My left breast is supposedly clear but I have only had mammo which as I said only showed my 1cm IDC and no ADH or DCIS although both were found on pathology after lumpectomy. Ugh.. what to do?? I am so afraid of not catching another cancer early enough. Is there anyone else who has knowledge of additional ADH/FEA areas and what are you doing about it if anything? Will the radiation really take care of it?
Driving myself crazy... problably everyone else too!
0 -
Curly, sorry to hear about your diagnosis. I think the decision of lumpectomy vs. mastectomy is very personal. Some women don't have a choice and that decision is always the easiest. Both have their pluses and minuses. The only advice that I can give you is that once you have made your decision, then move forward and not look back. Remember, you have great prognostics and regardless of which surgery you choose you should do well in the long term.
I also want to add, following a lumpectomy, you will be observed very closely for the next few years. Many women have difficulty emotionally with surveillance, while after awhile many don't. I have great confidence in my team and especially in my radiologist so I'm not that concerned.
I wish you well.0 -
Curly, perhaps a second opinion with a radiation oncologist might help, as well. Once again I want to reiterate the importance of moving on. After making a treatment decision, I think the hardest part of this journey is living with THAT decision. With breast cancer there is no "right" decision. Talk to your team some more. I think they are in the best position to tell you about your future risk vs. benefit of treatment.
0 -
Curly: you and I have the same stage and grade. I opted for a mastectomy because I didn't want radiation and eye my other breast too, thinking, without it I would worry less. I have had trouble with tamoxifen and don't want AIs because I have heart issues (tamoxifen can affect it too regarding blood clots and Afibs). I take 250 mg metformin as my only med and have no problems with it even though it is going through clinical trials at the moment....I just put myself in the non-placebo group and lower dose. That being said, it IS hard to live with decisions because I have a follow up with oncologist and don't want anymore tumor marker tests (I have Journal of Oncology 2012 to support this decision) and still feel vulnerable without a anti hormonal. The oncologist's report said no chemo, no rads, and modest benefit with hormones......I don't understand this but when I did cancermath.com, it sort of supported that. Everything has to be so damned complicated!!!!
0 -
Hi curly, I can see why you are struggling to decide what to do. I don't think there is a definitive answer re rads vs mastectomy as the head to head evidence in this situation is not available. You therefore have to go with your own instinct as VR has suggested. A second opinion might help you. The advantage of rads is that you don't have to have any more surgery and mastectomy is a big op and and may not be necessary. The advantage of mastectomy is that it would allow you to avoid rads which do have long term consequences and it would get rid of your concern about margins and the unknown issue of ADH and DCIS in margins. Sorry it's so hard but either way your stats are very good and once you finalise your treatment plan you will I am sure feel calmer and more positive about the future
Xx0 -
Curly, if you opt for mx remember there are many options for recon and many women have NSSMx and immediate recon and results are sensational!
0 -
Curly, I would also add that having a mastectomy is not a guarantee you will not need rads. I had a mastectomy but still had to have radiation due to close margins even though my surgeon obtained clear margins on re-excision.
0 -
Curly it is so hard. I had bmx 10 days ago. I was nervous about rads still don't know if I need it, I was nervous about the future. I felt I wanted it out and I didn't want to have to worry about margins. I think my opinion only it depends on the type of person u r. I am type a. I hate grey areas the unknown. I don't know if that helps. Good luck with ur decision
0 -
Curly hi one more person weighing in... Make a decision that you can be comfortable living with. Life is hard and cancer sucks...I do believe that the stress is the worst for us ...what ever will let you move on and enjoy each day ...if the cancer becomes your life then your are not winning
Hope this helps.
Good luck and take care,
cr0 -
Thank you so much everyone... I will get my Onco score next week and will request an MRI in order to have a better idea of Left side and any other unknown areas. WHY was I born a Libra?? lol We are so indecisive...just make a decision and move on will have to be my new mantra. I feel myself leaning to mastectomy... just want to be done and feel like it is completely gone... and it just doesnt feel like that right now - more like I will be sitting around the next 10-15years trying to "catch it early!"
and chocolate.. I love your username! Eating chocolate chips now as I type
0 -
curly just weighing in here. I had a lump & rads and never felt good about it. BS did not give me options but gut kept telling me things where not quiet right. One year later a lump in my other breast. Was B-9 but cells that made me high risk of getting BS in that breast so I switched BS and went for BMX with reconstruction. Was the best thing I did. Took the worry away for me. Everyone is different and you just have to decide what is best for you.
0 -
curly Chiming in to add that I didn't have a choice in getting a mastectomy, as I was multi-focal. However, I opted for a prophylactic mastectomy on the unaffected side. Had immediate reconstruction and am very pleased with the results. I've had no regrets. Everybody is different.
As my previous posts will show, bi-lateral mastectomy does not take away the worry of future recurrences. Maybe it reduces the chance of recurrence, but for me the worry will always be there.
0 -
Hi I did it. I went to see my surgeon and saw a MO they use. My surgeon is 2.5 hours away. Anyway, the MO I saw came up with the same conclusion as I heard this summer. Ovary removal. My mom (who is still thankfully with us 17 plus years later cancer diagnosis at 62), my aunt ( who is also with us cancer diagnosis 70 ish), my greatgrandmother (mom's side- we think) and my grandmother (dad side) who passed away at 88 all had BC. All brca testing ( I had it all ) are negative. However, based on my family history the recommendation is ovary removal. I am reading and reading and just don't know what to do. My issues are: is this really necessary?, I hate surgery, what happens if the side effects are bad, the research mentions so many different problems- heart, bones, cognitive changes, sexual.... (excuse the punctuation)... Also - finding good medical care locally is a challenge.
Is there anyone who can offer anything that may straighten me out. I am 51, the average age of women in menopause. I had ILC, stage 1 grade 1, onco 1, .. treatment BM. I am a tami failure, and I take Metmormin, and natural supplements including to reduce estrogen. Thanks for reading my rambling.
Thanks,
I still love chocolate.
0 -
Chocolaterocks Rather than having an oopherectomy, is ovarian suppression an option for you? I'm 50, and in the throes of peri-menopause. I'm no expert but started OS a month ago, and so far the SE's have not been significant.
I'm sure that others here will chime in with their experiences.
I wish you well in the decision making.
0 -
Chocolate, if I were you I would go for ovarian suppression before considering ovary removal. Your estrogen producing days are numbered at 51 and the primary reason to remove the ovaries in BC is to ablate estrogen. The zoladex or equivalent will block any remaining estrogen that your ovaries produce and in 1 to2 years your ovaries will be non functional. If you were braca positive or have a family history of ovarian cancer then that is different. You don't have to make a rushed decision, so take your time.
Annice0 -
thanks for the responses. I asked about lupron shots and I am not sure but the answer was absolutely not from the 1st, and the 2nd did not like it. I don't know why.
thanks!
0 -
Chocolate tough decision but don't see why you couldn't do Lupron first to see how you are with menopausal symptoms and then decide about ooph. There is no evidence against Lupron and no urgency for ooph! It's just a matter of opinions and surgeons like to do operations!!!
Annicemd0 -
Ditto, regarding what Annice just said!
BTW...Ooph was also suggested to me when I was diagnosed at 53. Told the doctor I would first try Lupron injections and see how that went. Did the injections for almost two years and now approaching 56, it appears that I am menopausal.
I think for our younger sisters, there should be an articulation about oopherectomy when menopause is in the distant horizon. However, I think doctors should offer chemical ovarian suppression FIRST, regardless of age, and let the patient see how they feel before recommending oopherectomy.
Also, at your age, if you decide to do ovarian suppression, you would be a great candidate for Zometa infusions as well.
0 -
Hello VR! long time and Annice.
Yes, I would be willing to give lupron a shot at this time. I need to find a physician willing.... have some ideas.... But for what ever reason the 2nd MO clearly indicated that there is a correlation between BC and ovarian CA and with my family history that is his recommendation(ovary removal). When I went to the big city MO this past summer I actually thought i was going to have the Lupron shot at that time. She said "no" (not nicely) and that she did not believe that was the correct way to go. So my question is: Is there a reason that there is opposition to Lupron besides the possible side effects?
Many thanks to two brilliant women!
CR
0 -
Chocolate... Have you had genetic testing to rule out BRCA? Not sure what your family history is, but if there is concern, then you might consider ooph. I have had numerous GYN issues and get transvaginal ultrasounds every 6 months. I've also had 4 D&Cs in the last three years. My issues preceded my diagnosis, so now I am observed extremely carefully. Every six months I stare down a discussion on hysterectomy, only to be told "watchful waiting is the prudent thing to do." On one hand I find it frustrating, but on the other hand, I think my team is being very careful. So far, aside from having all of the D&Cs, I've been doing well. No two people are alike. I consider myself lucky because I've adapted well to all of my treatment. I also have a great team that help lead me. Perhaps you need to re-evaluate your team before deciding what you would like to do. Some people think because they go to "the best" centers, they are receiving "the best" care. I think you receive "the best" care when you enter into a relationship with a physician you feel most comfortable with. Once you have that relationship, making those difficult decisions become a lot easier.
Regarding side effects, there could potentially be many. However, since you are close to menopausal age, the risks are probably diminished than if you were a decade younger. The side effects... Well, like I said before, no two women are alike, so it's hard to predict what side effects you may or may not have.
Good luck with your decision!0 -
VR- thanks for your response. I am sorry that you have had gyn issues... how difficult. I have been fortunate and have not had any issues in the gyn department.. I have had BRCA testing and a subsequent Comprehensive BRCA testing. All testing was negative. I think that when the doctor's see my Mom's (at age 62) report of: breast cancer that consisted of extensive areas of Spindle cell carcinoma, invasive ductal, LCIS and more.... and that she is alive (thank god) and continues to take Evista 17 plus years later (my fault for sharing the records) this is what I get. Also the Ashekenazi family history does not help.
So when I read this - It makes me think I should surrender and just do what they say...
CR
0 -
I am Ashekenazi too.
0 -
VR- Interesting that you are as well. I think that our genetic history creates concern. My parents are eastern European (Polish/ Russian) and Romanian/ European with little of anything else. I am thrilled that my husband is not totally from an eastern European background since I do worry about my daughter....
0 -
I am BRCA2+ and had the ooph. I was 48 at the time and it was a pretty easy recovery for me. I think they prefer to do it for some people because suppression helps with preventing estrogen but will not prevent ovarian cancer. It's hard when your dr's have a different opinion than yours...good luck!
0 -
Ginger... I am glad to hear that you had a quick and uneventful recover! Because you were BRCA +, I am sure it was an easier decision to make. Unfortunately, in my case, the benefit of ooph isn't as clear. I don't have a family history of breast cancer and I am BRCA- , so my physicians are not OVERLY concerned that I might get ovarian cancer which makes the decision to have an ooph questionable. Ultimately, I just might have to have my ovaries removed because I have a hydrosalpinx which is close to my ovary. I might also need a hysterectomy due to multiple pesky uterine polyps. I also had fibroids, but the Lupron shrinked them. While Tamoxifen is associated with polyp growth, because this issue PRECEDED my BC diagnosis, while the Tamoxifen doesn't help retard their growth, my physicians DO NOT believe they are causing the problem. At my next GYN appointment, if I have another pesky polyp, or if the hydrosalpinx grows or causes me pain, then I will submit to surgery. I subscribe to my mother's philosophy. She's a retired 87 year old nurse whose specialty is OB/GYN. She also had an oopherectomy. She always says to me,"Try to hold onto your body parts for as long as possible." If the risks outweigh the benefits, then I think that's a good philosophy to have. My breast cancer diagnosis and treatment have exposed me to many other risks, such as heart disease. With a Stage 1, Grade 1 premenopausal diagnosis, BRCA-, I think I have a much greater risk now of dying from heart disease, which DOES run in my family, then dying of breast or ovarian cancer. Ironically, my OB/gyn's wife was recently diagnosed with ovarian cancer....out of the blue! No family history of any cancer whatsoever! Go figure!!! I am so upset for them! Without a doubt, with ovarian cancer front and center in his mind, I don't doubt that he would recommend an ooph for me if he clearly felt it was warranted. And if he clearly felt I needed it, I would do it in a heartbeat. Choosing whether or not to have an ooph, has thus far been the hardest decision on this journey.
0 -
Hi CR, I would be interested to know if your docs are worried about your ovaries if they have yet asked for you to have CA125 or done any ovarian imaging? Of course if either of these raised concern then that would solve your treatment dilemma. If both were normal then that certainly confirms no urgency for ooph.
Medicine and health care is not black and white but doctors views often are!
If you are happier to go straight for ooph because of concerns about your family history then go for it but don't let the doctors force you to do something that you don't feel comfortable with!
Annice0 -
Re Lupron, in younger women's there are risks mainly related to osteoporosis and symptoms of menopause but you are already approaching average menopausal age so the main risk would be menopausal symptoms which will be reaching you soon whatever happens!
AMD0
