Dec 8, 2019 12:32AM ROAREUS wrote:
can i ask... if your mammo and ultrasound were negative, what made them do a MRI?
Posted on: Nov 6, 2009 02:53PM - edited Nov 23, 2009 02:18PM by Warrior517
I am so thrilled we finally have a place to call HOME here! I was diagnosed w/IDC last year at the age of 39. It was in 2/6 lymph nodes. I was also HER2 and Estrogen Positive.I had dbl mastectomy w/implants. This summer, one of the implants failed. So, I underwent a DIEP procedure w/Dr. Massey and Dellacroce in New Orleans. Great Outcome!! I did TCH for six rounds, rads and a year of Herceptin. I am currently on tamoxifen and Boniva (study).
I just wanted to start this thread for those that had it spread to lymph nodes. I can't tell you how many threads I have read that said "thank God, my nodes were clear"...we all weren't as lucky. BUT I believe God puts people in our path when we need them most. Last year during Rads,I met an older lady(she was there for her hubby) who told me that she was a 30 year survivor and Yes..It was in her lymph nodes! The job of the lymph nodes is to catch that little sucker!
Posts 2191 - 2220 (2,229 total)
Dec 8, 2019 12:32AM ROAREUS wrote:
can i ask... if your mammo and ultrasound were negative, what made them do a MRI?
Dec 8, 2019 01:18AM Peregrinelady wrote:Actually, I was misdiagnosed for 20 months after the negative mammogram and ultrasound. That is why I think you are lucky they are suggesting further testing to be on the safe side. I am in a small town and my pcp did not suggest further testing which is supposed to happen after both are negative with a palpable lump. I had the MRI after diagnosis to check the other breast.
Dec 8, 2019 11:11AM ROAREUS wrote:
Got it. While I am grateful they are being conservative even with a normal clinical exam, I am also terrified...
Dec 8, 2019 12:45PM Peregrinelady wrote:Try to keep yourself busy and let us know how it goes. If the MRI comes back clear, you will have peace of mind.
Dec 10, 2019 10:14PM HoneyBeaw wrote:
Same here did not show up on mama and had a hard time finding on ultrashould . Mine was right under my nipple right in the middle. I sill swear if it had not been for my nipple being inverted and and me being hell bent something was wrong I would have went another 2 yrs with that damm thing. I had clear mama 2 mts before finding it myself
Dec 18, 2019 11:57AM ROAREUS wrote:
I got my MRI results and it was fine. Thank you everyone for your support. Will go back in 2-3 months for a follow up to make sure it does not happen again. Greatest Christmas gift I could have asked for. Hope everyone has a happy holiday.
Jan 4, 2020 02:27AM llilly wrote:
Anyone had their Oncologist suddenly state they no longer need to be seen and can be transitioned back to regular doctors. I am 8 years out from surgery and on Year 8 out of 10 for taking Arimidex. It was my understanding that I would be followed until completing Hormone Therapy (long term surveillance of bone and cardiac issues) and would still want my tumor markers reviewed after completing Hormone Therapy for comparison, especially since I had one positive lymph node. At this point, I need to be working on my Survivorship Plan. Thank you.
Jan 5, 2020 05:54PM Nancy2581 wrote:
Hi llily though I am not 8 years out only 5 1/2 I am wondering if you were transitioned back because they (according to my oncologist) are recommending 7 years of hormone therapy now instead of 10. Not sure just a thought.
Jan 8, 2020 06:48PM Pittiemama wrote:
Hi All! I love reading this thread, but I am curious what the ratio of pre-menopausal vs post-menopausal is? I've been diagnosed as IIb with 2 involved nodes and at 43 years old I am only pre-menopausal. Everyone I've talked with so far all seem to lean on a more aggressive treatment because of my age and want me to do 4 rounds of chemo. Have any of you had success at a younger age without chemo? My RO is already planning 30 rounds of rads with hormone blockers as well. Thanks in advance!
Jan 9, 2020 01:15PM PebblesV wrote:
HI Pittiemama - I have a very similar case to yours, and hopefully its encouraging to hear that my first mammogram post-treatment in October came back completely clear and cancer free! In fact, they just said, "Everything looks good, see you next year." and the visits with my oncologist have gone from every month to every 3 months to 4 months and now 6 months.
I was also diagnosed at 43, ER/PR+ and HER2-, 2 involved nodes, also (and still) pre-menopausal. I did the surgery (lumpectomy, not masectomy), radiation and am currently on tamoxifen (hormone therapy) treatment. I DID NOT DO CHEMO. The saving grace was the Oncotype DX test which I highly recommend you insist on getting (seems you would qualify for it) where results came back to say that the risk of recurrence for me was the same whether I did just tamoxifen or chemo too, and at that point, my oncologist who had been assuming chemo would be part of my treatment prior to the Oncotype results, said - and I quote - that he would "no longer recommend chemo due to the EXTRA TOXICITY IT WOULD INTRODUCE for no benefit".
I personally felt like a cloud had lifted when I learned I did not need chemo. To be honest, I was already leaning towards not doing chemo, but I knew if I didn't have the data and tests to back up my decision, it would be very, very hard to hold my ground amongst family and friends and doctors who would be pushing me to do chemo. Yes, they say that because you are "younger" (the only place early 40's is young LOL), that we can better tolerate chemo and go for a more aggressive treatment. But I saw it the opposite way - that because I am younger, I am less willing to introduce debilitating side effects, many of which can be permanent (like a permanent neuropathy, or hair loss as has happened for some on taxol) into my life when I have such a full life ahead. Now, plenty of people do chemo and get through it just fine and make a full recovery. That said, I saw too many cases close to me where people did chemo and it came back anyways, or did chemo and suffered some very permanent side effects as a result, and in almost all cases, for someone pre-menopausal, chemo would push them towards menopause. Whereas on tamoxifen, for better or worse, I still get that time of month very regularly every month - and my oncologist actually thinks I'm tolerating tamoxifen so well BECAUSE I'm pre-menopausal, and far from menopause, so he says I'm not confusing any menopause symptoms with tamoxifen. Not getting hot flashes, not getting joint pain, had a little nausea when I started but it passed in a week and now I've adjusted to it. Did gain weight and much harder to lose weight but I'm trying to break through that now.
Anyways, I have no regrets on the path I chose because I've been able to get through all the treatment (including a fairly aggressive radiation treatment!) with minimal to no side effects, feel like I didn't lose any part or sense of myself along the way, and came out of it a year and a half later completely in the clear and feeling healthier than I did when I was first diagnosed! I'm a big believer that you have to do your research, be informed, trust your gut and choose the path that you feel is best for you and move forward with confidence. Everyone has a different risk/benefit scenario in terms of what risk they are willing to tolerate for what benefit, you just have to know what you're stepping into, what risk you are willing to take for what benefit, and go with it. For me, I said yes to some things and no to others. I was not OK with the risk of a full axillary node dissection with my surgeon told me had a 40% chance of lymphedema (a permanent condition) but was OK with an aggressive radiation treatment that still carried a 15% risk of lymphedema. Such were the chances I was willing to take, and I felt I could control how I reacted to radiation better too as my nodes are still there (yes they still treated all the nodes with radiation since I had 2 positive nodes). I was fine with tamoxifen and researched a lot how to manage and avoid side effects and am still taking it, and lucked out with an Oncotype score that validated my not needing chemo, but I was already leaning towards saying no to chemo, lots of stories behind that I can share another time or over messaging. There is another on this thread who had a high Oncotype score, still said no to chemo, and is thriving and healthy 6 or 7 years later.
Anyways, since we have really similar cases, I'm happy to share more insight - feel free to reach out to me over message. Best of luck with your journey, please keep us posted, and know that this is a very beatable and survivable thing. And its fully possible to get through this while maintaining your sense of self, not suffering, and minimizing side effects. I did it! I know others who have too!
Jan 9, 2020 07:43PM - edited Jan 9, 2020 07:47PM by JRNJ
Pittiemama, Your Dx does not appear correct. LCIS and DCIS do not spread to nodes. Did you have lumpectomy? Mx? Were they not able to find the primary invasive cancer? Maybe that's why they want to be aggressive? What is your Onctotype Score? I am 54, but my Dx is similar to yours and I am a "young" 54, totally pre-menopausal with very active hormones. With Drs. these days they really rely on Oncotype Score with Estrogen positive Dx. With a 15, I was in the low risk/gray area. I went for three opinions, 1. I don't know, 2. No chemo 3. Yes chemo, but since you are "low risk" CMF (from Sloan). It is not that common and most of the people on it were recommended by Sloan or a hospital in CA. Dr. said it is about 2% less effective than AC, but has lower risks of permanent side effects especially neuropathy and hair loss heart problems. I am on it now. They said my hair would "thin", but after 3 treatments I've lost about 60%. I feel pretty crappy the first week, but pretty good the second week. But not worst case scenario, to my surprise no nausea, but some chemobrain, fatique, slight headaches, slight digestive issues. Although it is better than TC and AC, it is still chemo and I am not working. And it is 8 rounds every other week, so takes longer. Just wanted to let you know there was another option. Also depending on if you have ILC or IDC, two of my Drs. recommended skipping Tamoxifen and going to AIs, which are supposed to be more effective, especially for ILC. Sloan recommended Lupron for ovarian suppression, but I am going to get my ovaries removed. I've had two periods already on chemo, nothing can stop them.
Jan 24, 2020 09:32AM Peregrinelady wrote:With me, they injected a dye that goes to the sentinel node (where the cancer usually spreads first). My first node was clear, but the surgeon took the 2nd node as well, and it had micromets. Has anyone mentioned the sentinel node biopsy to you? Some surgeons take more, but I am not sure what they base that on.
Mar 12, 2020 08:47PM vidal1993 wrote:
My wife is now 44. She will have axillary node dissection next Thursday March 19.
Anyone wanna share their experiences? We are concerned of course about lymphedemia. How was it post-surgery? For how long?
My wife had her lumpectomy last September, and 2/2 nodes were positive. She has just finished chemotherapy on the FEC-D regimen.
The pathology reports from her surgery last September indicated macrometastasis, and extranodal extension of about 2.5 mm.
After this she will have radiation, and then hormone therapy.
Looking forward to the replies. Thanks in advance.
Mar 20, 2020 06:13AM PebblesV wrote:
Vidal1993 - I’m only just seeing this now (haven’t checked in lately), I guess your wife had the axillary node dissection today? I hope she is well.
A bit late to share my perspective and experience but I also had 2 positive nodes and declined the axillary node dissection due to the high risk of lymphedema. Radiologist later told me they could treat my nodes with radiation which carries far less risk of lymphedema (15% for radiation vs 40% for axillary node dissection according to my surgeon). Happy to report that I had a completely clear and cancer free mammogram recently! It’s almost 2 years post diagnosis for me.
Mar 20, 2020 03:10PM JRNJ wrote:
vidal1993, I suffered a lot of anxiety over this issue. I thought my Dr. would take more nodes due to 2 positive and she didn't. And when I showed her the NCCN guidelines that recommend node disection for mastectomy, she got mad and refused to do it. Drs. are split on this issue. So after time, it didn't make sense for me to seek out another Dr. to do another surgery, if I was going to get radiation. But lots of women are fine with the dissection, so hopefully your wife will be too and will have peace of mind they are out. I'm still having anxiety that radiation won't get it all and node invasion won't show up on any scans under 5 mm, and they tell me I won't get any more scans with mastectomy anyway.
Mar 30, 2020 12:48AM - edited Apr 2, 2020 12:05PM by Sivatej
Hi everyone , it's so nice to see you all doing great!
My mom was diagnosed in November of 2018 and the imaging showed N2 nodal involvement , Level 1 and Level 2(er- pr- Her2+)
She first had 4 rounds of AC, then surgery (which showed T2N1, 3/12 nodes) then she had 4 rounds of Taxol+Herceptin then continuing herceptin for an year finishing this February(2020) and she is doing great as of now.
My question being , is it usual for people to have surgery (or atleast , is it not very unusual ?) after 4 rounds of AC ? I see that mostly either people have surgery before or after 8 rounds of AC+TH. Also , now which is the staging that I have to look at for her diagnosis, the one before or at the time of surgery?
Mar 30, 2020 09:49PM vidal1993 wrote:
hi jrnj and peebles. Thanks for your replies. As it turns out, my wife’s surgery was postponed due to the Coronavirus crisis. I understand she is at the top of the list, but it is causing us tremendous anxiety. The pathology reports after her lumpectomy showed extensive lymphovascular invasion.
She is starting tamoxifen now, any comments about that?
May 1, 2020 01:05AM Mariadelpilar wrote:
My oncologist is adamant about not drinking alcohol. I just finished radiation after surgery and chemo and will start ET. I enjoy drinking a couple of glasses of wine every night as I sit on our deck and visit with my husband. I am scared to death of a recurrence because of the alcohol. Where are you all on this subject? Also when the research says that every drink increases your recurrence rate by 7 to 10%, what does that mean ? 7% of what number?
Thank you all for being so supportive
May 1, 2020 10:20AM GoKale4320 wrote:
I pretty much gave up alcohol. I didn’t drink a lot before- one craft beer a week, so now I will have a sip or two once in a great while. I am doing several things to try to prevent a recurrence such as plant-based diet, time-restricted eating, better sleep, dial-down stress, more exercise and little to no alcohol.
I think the 7-10% reduction in risk is really something like: if your risk of recurrence is 15% for example, 10% of that would be 1.5%
I suggest doing some reading and decide for yourself what your plan will be. There is tons of information out there. It could motivate you to make changes (versus just doing what you’re told).
May 1, 2020 05:19PM bravepoint wrote:
Mariadelpiler - My oncologist told me that 2 glasses of wine a week was OK. I used to enjoy a glass every night with my husband but have cut back to just weekends.
May 2, 2020 11:31AM smiling_brenda wrote:
My MO (@ Stanford) said the limit is 3 drinks per week, but up to 7 (1 a day) is "probably ok".
I generally have 5 drinks a week but it is always organic wines (less sulfites, pesticides, alcohol) etc. I get it from dryfarmwines.com
May 2, 2020 03:54PM Mariadelpilar wrote:
thank you, smiling Brenda! Looks like I’ll have to cut back!!!!
May 2, 2020 03:56PM Mariadelpilar wrote:
I thought that was the math, but wasn’t sure. thank you
May 4, 2020 12:13PM justme1964 wrote:
How big of a risk on recurrence if one drinks. With the covid-19, I been drinking about 3 drinks a day over the past 2 weeks. I have been out of treatment one year, my following up appointments have been rescheduled due to the virus. I don't want to over drink and go back my old habits. but don't want to freak out just because I had 2 bad weeks of drinking. Because from what I read my drinking, being overweight, and bad eating habits could have given me my bc, Again, don't want to over think or freaking out just because I had bad weeks.
May 4, 2020 01:29PM GoKale4320 wrote:
Justme1964- don’t beat yourself up over a couple of bad weeks. Instead, think about all of the good changes you’ve made and try to build on that. If you still need to make some improvements , there is a lot of good information out there. Tons of stuff online to read until the library opens again. I took small steps to a better lifestyle over many months.
May 6, 2020 12:41AM Mariadelpilar wrote:
dear just me, I agree. Don’t overthink it....I am also trying to cut back to one drink a night, but it is hard! We are very social and wine has always been part of our lives. I do read a lot and get conflicting answers on drinking and breast cancer recurrence. Is anyone has a cause and effect type of research data on drinking and breast cancer recurrence, please share it. All the research seems to be observational.
May 6, 2020 10:33AM santabarbarian wrote:
I too have been a lot of carbs eating lately-- since sheltering at home-- though this has not been my habit for a long time. I agree, do not beat yourself up. I am considering it reaching for a simple dopamine comfort in a time of emotional trauma. I think like you I am already feeling the need to go back to more veggies though because of how I feel on more veggies. Simple carbs produce a general/subtle inflammation in my body, that I feel. Healthy eating plus supplements is so much better in terms of how I feel.
An apple or some nuts to snack on is my normal. Not bread & butter! I need to get back to a whole foods vegan basis. I have luckily stayed with intermittent fasting which to me makes a huge difference no matter what I am eating.
May 7, 2020 09:38AM - edited May 7, 2020 09:39AM by claireinaz
Here's are two link to b.c. recurrence and alcohol consumption. It looks like (according to the study) some research reports no increase in recurrence, and others do.
I share concerns. I like wine. I do believe that regular exercise, meditation, eating habits, weight, environment, etc. all counter drinking alcohol (that is my story and I'm sticking to it).
May 8, 2020 12:58AM - edited May 8, 2020 12:59AM by Mariadelpilar
I agree. Vegetables, exercise and a healthy weight should counteract the effects of wine. I have specifically looked for research on alcohol and recurrence, but I have found a lot of conflicting information. I will google next the recurrence rate of women in countries that consume a lot of wine like Italy, Spain, and France!😜