Any IDC/Stage 1/Grade 1/ES&PR+ Her2- ever had recurrence?
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It's very individual. Some women have basically no side effects (describe it like a sugar pill) and some women have terrible intolerable side effects. It sucks but you basically just have to keep trying drugs until you either find one that you can live with, or can make an informed decision that the harm outweighs the risks
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Carlsoda: wow. My diagnostic mammo didn’t see my tumor. I felt something tho so they had to schedule a ultrasound too. So even tho mammo didn’t see it at all they did see it on ultrasound. That isn’t 100%either tho as some on this forum had their cancer not seen on ultrasound. No diagnostic is perfect it seems like. I think MRI is best but I think I’ve read two stories where MRI didnt see the persons breast cancer either. so that’s frustrating! Keep us posted on how things go for you. Any MRI results? We are here for support!
Fgodmother: what tumor marker test did you have done that tested CEA? Just curious what the name of that test is? I’ve been having joint pain. Keep us updated on how things are going for you too. We are here for support!
PeginVA: sorry to hear about your diagnosis. We are here for support tho! Others on the forum will have to answer you regarding hormone blockers. I chose not to take any. What stage and what grade and what type of breast cancer do you have? Also how large is your tumor? We are here for support. Hope surgery goes well. Keep us posted.
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salamandra is right. Everyone has to choose what’s right for them treatment wise. And I haven’t been on hormone blockers but everyone seems to tolerate them differently. Your treatment has to be your choice.
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PeginVA, I am 48 and had been on HRT for a couple of years prior to my BC diagnosis last year so I understand your concerns. Within a month and a half I stopped HRT, had UMX and started Femara. It wasn't fun but doable. The side effects of letrozole so far are bearable. And the ladies here have been so helpful with advise on how to cope! The main issues for me so far have been joint pains (contained with PT, turmeric and exercise) vaginal dryness (I use estrogen ovules with my MO blessing and another gel with hyaluronic acid) , hair thinning (I've changed hairstyle and hair products and am reasonably pleased now). I am probably less focused but I can't tell if it's the hormones or all that revolves around cancer dx and treatment. I still manage a demanding job though I cut down the hours. I try to exercise regularly and that helps my energy levels. My MO had told me upfront that it would take around 4/6 months for SEs to emerge in full but that they would likely improve afterwards. Indeed, that is what happened. But I am determined to make this work. Even if my cancer was supposed to be of an indolent type, the MO said AIs can cut my risk of recurrence in half. I have 2 young kids and I want to maximise my chances of taking care of my kids until they can fly solo. Yes, my quality of life has decreased to some extent but it would be so much worse if I had to face recurrence (or metastasis) and the heavier treatments that this would imply. Only you know what you're ready to accept, but one good thing about AIs is that you can try , see how it goes and stop if it gets too much.
Best wishes for your treatment and decisions , take care!
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PeginVA: I understand your concern regarding the hormone blockers especially since you have been on HRT for 15 years. SIde effects vary with everyone but there are other medications that can help. Hot flashes are very annoying and can drive me crazy at times but there are meds to decrease them. Effexor is an antidepressant that works for many, My MO wants to put me on low dose ditropan. You should not have to suffer with hot flashes since there are many options. Joint pain is also a common problem but I do not have any issues with that. I am also 65 so I am a little stiff in the morning but that is probably due to my age. Bone loss can be a problem so they will watch your bone density through DEXA scans. A lesser SE is increased cholesterol, lipids and blood pressure,. Unfortunately I have that so now I am on 2 more pills to control B/P and lipid numbers. I know this sounds like a lot but you may not have any SE's. Just take one day at a time and know these anti hormonal meds are for decreasing any reoccurance. Good luck and let us know how you are doing
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I had a small tumour, less than 4mm last year. I had 4 sentinel nodes removed. Nothing was found in the nodes or in the lumpectomy specimen, only in the original biopsy. The biopsy was er positive, pr negative, her2 negative.
I had a recurrence in one node 14 months later. The recurrence was both er and pr positive, her2 negative.
Radiation was not recommended the 1st time. I had alnd, double mastectomy Feb 2021 and am currently doing chemo.
I was told that my chance or recurrence was very low when I developed cancer the 1st time. Yet, it still happened.
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PeginVa I’ve been on tamoxifen for almost 5 years now and no issues. If you have issues talk to the pharmacy - it could be some filler ingredient in the med causing an issue. Try another one and see if it works better. Good luck!!
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@jons_girl: wow even MRI could miss it? So sad! Both of my cancers were missed my mammo but MRI saw it. So moving forward I will be getting a yearly MRI on my one remaining breast. Mastectomy scheduled is May 5th.
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Lizard123 - yeah my risk of recurrence was at 3% and it came back. Surgeon was stunned - great margins, radiation and tamoxifen for almost 5 years. But I guess the risk is always there. Mastectomy is scheduled for May 5th and hopefully that will be it!
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Carlsoda: yes even mri can miss cancer. I’ve read stories of women on this forum. It’s crazy that they haven’t found one diagnostic that works for all. My breast specialist has urged how important it is to have more than one diagnostic. So I get checked every 6 mo still. That may change at some point. And I’m thinking I will have mri, ultrasound, and my daughter is in the process of getting her mammo tech certification. I do think I will start having mammo once in awhile too.
I also know I’ve read at least one story where a person got recurrence of breast cancer. First cancer was missed by mammo. Second cancer the mammo caught and it was missed by another diagnostic. So I think the thought is to vary the diagnostics so your seeing breast tissue with other modalities.
Also breast cancer can come back after a mastectomy pretty sure I’ve read stories of women here with recurrent cancer after mastectomies....so nothing we choose surgery wise is 100%. I think the rate of recurrence is very low with mastectomy tho
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lizard123:Wow so sorry to hear about your story here too ❤️
thank you for sharing your experience here.
Sorry for asking questions but why would you be doing chemo? Was the breast cancer grade higher when it returned in 2020? You were stage 1 in 2019 but didn’t list grade in 2020 on your signature line so thought maybe that’s why they are having you do chemo. Just was curious about that.
Lizard123 and carlsoda: I hope going forward you and Carl soda don’t have any recurrence. Sending hugs to you both!
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Thanks so much for taking the time to reply. I have been doing a lot of reading on other people experiences. I’m divorced with no kids and am not sure what I will decide. I’m still so early in this and haven’t met with my MO or RO yet but do meet with the RO tomorrow morning. Hoping to schedule my surgery after that appointment and get things moving. I feel like its been forever but my initial mammogram was only on March 2nd with the biopsy diagnosis coming 3/31. I guess I should wait for the results of the Oncotype DX and sentinel node pathology to make decisions.
I know my life will never be the same and wish I hadn’t put dating on hold during Covid but everything happens as it should and I am strong and healthy other than this and am trying to decide what I want my future life to look like. It’s a process for sure!
So glad I found the community. It’s nice not to be alone
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Chemo was recommended because the cancer was in one lymph node and the cancer recurred quickly. I personally think that it was there all along but of course can not be sure.
I have also done folfox chemo for colon cancer 12 years ago. That was a breeze compared to AC chemo.
I am not sure I want to do taxol. I have read a few studies that it does not have much benefit for early stage er positive breast cancer. I have neuropathy from oxalipaitin (folfox). I am a bit worried that taxol will make it worse. My oncologist can't really ballpark with any certainty the added benefit of taxol. That makes the decision hard to make. If anyone has ideas, feedback from their own oncologist I would appreciate it. Thank you
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PeginVA: we are here for support. I hope all is going well and you have a great oncology support team where you are. I’m so sorry your having to go through this. Cancer does change our lives. But post cancer treatment life has gone back to fairly normal for me now. It has taught me to appreciate everything in life. I think I try to take life a little slower now too overall and see how beautiful life is. Keep us posted on how things are going for you. Sending a hug to you. 💐
Lizard123: Oh ok that makes sense about your cancer and the chemo. I don’t have any experience with chemo. So I hope someone else has given you their feedback about your question. Keep us posted on how things are going for you. We are here for support. Sending a hug to you.0 -
I had a lumpectomy on my right breast on 6/23/2021 followed by a bilateral oncoplastic breast reduction. My breast surgeon removed 100 grams of tissue down to the chest wall from my right breast along with one sentinel lymph node. The plastic surgeon removed another 100 grams of tissue from my right breast along with skin, Then 200 grams of tissue along with skin from my left breast. The pathology on all tissue and skin from both breasts along with the sentinel lymph node came back negative.
At the stage where I am trying to decide my treatment after surgery. Saw my RO last Friday and she did not push radiation therapy. If I decide to do it she recommends 3 weeks/5 days a week/ full breast since I had the oncoplastic breast reduction. She suggested I wait until after my appointment this Thursday with my MO to make any decisions. I am just so confused as to when radiation is needed and when endocrine therapy is needed. Hope it will become clearer after Thursday.
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ReillyGmom: We have the exact same diagnosis (different breast). I had bilateral oncoplastic breast reduction also. My BS and MO highly recommended radiation 3 weeks 5 x a week as well as Letrozole to further reduce my risk for cancer. I really didn't want to do either but for me it was the right thing to do. I had no issues with radiation, letrozole has caused some SE's that are annoying, hot flashes, high blood pressure, high cholesterol all of which I never had prior to starting the med. THe MO drives the cancer treatment after surgery is over so hopefully things will be clearer after your visit. Let us know and good luck.
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Hi Quinnie - you are right! After seeing my MO this morning everything was so much clearer. Wish I had been able to see her a few weeks ago. I might have lost less sleep - LOL. I will have 3 weeks / 5 days a week of whole breast radiation therapy and that is it. No endocrine therapy. My tumor was less than 5 mm. If it had been greater than 5 mm she would have recommended the endocrine therapy. This was based on the National Comprehensive Cancer Network which is made up of 31 leading cancer centers including Mayo, Sloan Kettering, Johns Hopkins and more. Had I been over 70 years they would not have recommended the radiation either. They are doing a test study now for women 50 - 69 years to see if radiation is needed with Stage 1, Grade 1, less than 5 mm, no lymph node involvement. I found the NCCN site has a lot of information although to get to it you have to sign up which I did as a cancer patient.
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Reillygmom: That is good news. Mine was 11mm so I guess thats why I am on Letrozole. Its amazing they found your cancer since it was so small. The new technology is amazing. I will have to go on the NCCN website and check it out.
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quinnie: It is amazing that it was found. My screening mammogram showed a spot that the radiologist wanted to check. After my diagnostic mammogram and sonogram the biopsy was recommended. My breast surgeon believes all of the tumor was removed during the biopsy. Hope your SE get better with time.
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ReillyGMom, mine was 3 mm, but I am on letrozole. I have been for 2.5 years, but am seriously considering going off due to vaginal dryness and atrophy caused by this drug. I'm also 64 now, so I don't know if I really "need" it that bad or not. Anyway, I'm seeing my MO in a couple weeks to discuss this. I did have 20 rads. I am nearly 3 years out. I'm scared not to take it, but I absolutely hate the thought of 2.5 more years. Ugh. Maybe I am making more of it than it really is.
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Reilly and Quinny: Thanks for posting. We have similar dx's. My tumor was IDC 4 mm. I had left side lumpectomy. No rads, No hormone blockers....I am careful with my diet. I get scan every 6 mo. I am 4.5 almost years out. So far all is well. My choice isn't for everyone though. I understand that. But it was the right choice for me. I actually don't mind having a scan every 6 mo. I may switch to yearly at some point. But my insurance pays for it. And my mind is put at ease having the scans. I am going to probably have MRI every couple years and have been having ultrasounds. My daughter is getting certified as mammo tech so will add mammos back at some point. But my cancer was missed on a mammo because of my extreme density. So I can't depend on mammos but may still add them in once my daughter is a mammo tech which will be soon.
kksmom3: Thanks for posting. Do you know what your growth rate was? You are grade 2. The rest of us were grade 1. In my mind stage makes a big difference on what to choose for treatment. I had the K-67 test for knowing what the tumor growth rate was. I was grade 1. As I understand that is a growth rate of between 1-10. (I was 9 so nearly grade 2) grade 2 is growth rate of 10-20% and grade 3 is over 20%. This is what I understand. Maybe I am wrong. Anyway so it is important I think to know your growth rate. Because if you were like 19 then you would know you are closer to grade 3 within grade 2. Does that make sense? So even though I am grade 1 I was very close to being considered grade 2.
Hope you all have a wonderful weekend!
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Jons-girl, hi, yes I was a grade 2. My score was a 6. My Ki-67 was high though, but I was still grade 2, as there are 3 things that comprise the Nottingham score, not just growth rate of tumor, which for me was a 1. My MO thought that was of way more importance. Well, at any rate, I am fortunate that this was found extremely early. and I'll pray and hope for the best for us all.
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Hi kksmom3: I was talking about the ki-67....if it is above 10 it is grade 2. Mine was almost on the line of grade 1-2. I am confused a bit because I never got a nottingham score. I do know my tumor was well differentiated though. But it was my understanding the ki-67 is what told you what your cancer tumor grade was. My surgeon I guess leaned more on the ki-67 number?
Thanks for mentioning this because I guess I didn't realize this info mattered regarding grade level.
Yes it is great it was found early....mine was too and so far all is well!
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Jons-girl that is kind of odd that you didn't get a Nottingham Score, but well-differentiated is the same thing as grade 1, so no matter. It is not just the Ki-67. If you google it, you will find it, but it was on my path report. My Ki-67 is discordant with the pathology report. My MO told me she relied more on the mitotic rate, which for me scored a 1. (Scores are 1-3.) From what I've read, Ki-67 is unreliable and a lot of cancer centers don't even use it. I hope that's true.......that was the only really bad (high Ki-67) part about my cancer. I did do 20 rads and have spent 2.5 years on letrozole, so far. Being grade 2, I never even thought about not doing everything they said I needed. It never occurred to me to say no, I wish now I had thought more about it, but at the time we are just so terrified. (: I am very fortunate that the IDC that I had was small, I originally only had been diagnosed with DCIS. I'm almost up for my 3rd year mammogram and ultrasound.
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@kksmom3 - we have similar diagnoses and you bring up something I've thought about a lot. I am turning 64 this year and with a small, early stage cancer and my age, do I really need to be on an AI? If I were younger and/or had a higher grade cancer, it would make sense to me. I have discussed it with my MO, RO and BS and all were horrified that I would consider not taking an AI. But I think their concern is liability if they don't recommend an AI and then there is a recurrence. I've been on the AI for 6 months. My concern is long term impact to my health. Hypothetically, taking the AI keeps the cancer away, but perhaps I end up with hip fractures or heart disease due to the AI and my QOL is significantly impacted.
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Harley07, well, I turned 64 last May. Truthfully, I have my 3rd )after diagnosis) annual screenings mid August, then meet with my MO on the 17th. I am telling her I am done with letrozole. I have done 2.6 years on it, I am supposed to only have to be on 5, but I don't think I can continue. I was fine on it for a year and a half. Then, I started hurting down south. It's gotten to the point that my PCP prescribed some low estrogen cream sparingly, as I really hurt down there. All those tissues are fried without estrogen. I have a little muscle pain and I could handle that but not this feeling like knives are stabbing me when I walk, sit down, or bend over.
I also have had 4 UTI's in a year's time. I don't want to live the rest of my life like this. I have tried lots of OTC moisturizers, all of that, but they only help a little. I wish I could continue, but this is just no way to live. So, I will talk to her in a few weeks. I do wonder if anything more can be done. I don't see the point of switching AI's, because they all do the same thing.
I know that they don't want to deviate from the Standard of Care. I get it. Liability and all. I am continuing with daily exercise and healthy eating....... and pray it's enough. Well, this is way too much TMI, but hey....... thank you if you got this far!
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My ki 67 is 3- 4. Grade 1.
Seems it was slow growing
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Monique
August 8th, 2021
I have been diagnosed with DCIS, Grade 3, it is about 3 cm, and one of the fingers is pointing towards my nipple so I am scheduled to have a mastectomy on my left breast, with expanders to accommodate an implant later. When expanders are removed, I will have a lift to my right breast.
Very scared that I won’t know about my: ER, PR, or HER2 until after surgery. Very frightened about having chemo, ER already looks to be negative.
Any thoughts or advice are appreciated!DX: DCIS, left breast, grade 3, appears to be Stage 0, 3 cm in length. Dr thinks could be invasive.
Surgery: Scheduledfor 09/02/2021: left breast mastectomy; with expanders
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Hey Monique,
It sounds like you are still waiting to hear if it's even invasive at all! Hopefully they don't find any invasive cancer.
Not sure what you mean that ER looks to be negative but you are still waiting for the ER/PR/HER2 status?
This initial waiting time, while the info comes in in drips and drops, is very difficult. The only advice I have is to try to stay in the moment and not borrow trouble, and use whatever coping mechanisms you have to get through it. You can't deal with something unknown. If you need chemo or whatever else, dealing with the reality of it will at least be more concrete than the specter of it.
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Hello
I also could not withstand Arimidex. I went off after 4 months and have lost weight and try to swim, however, I have really not changed much. I am 62 (63 in January) and will get my next mammo/ultrasound on October 1st. Praying for good results.
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