CALLING ALL STAGE I SISTERS
Comments
-
We bought in the New Year last night with friends at an Indian restaurant , and the watched the fireworks over the bay ..Such a lovely night ..
Wishing you all health and happiness for 2019 xx
0 -
happy New Year! I hope it’s a happy and healthy one!
0 -
Happy New Year to all.
Just found this thread. My story is that I was diagnosed at age 77 (I could be the "poster child" for continuing mammograms after age 75). When I was called back for a diagnostic mammo and ultrasound I wasn't too concerned as that had happened before with final diagnoses of cysts. When the stereoscopic biopsy was ordered, still not too concerned until the radiologist who was doing the biopsy remarked that the suspicious area had irregular edges. The tumor was near the chest wall behind the nipple. Even when I knew it was there I could not feel it.
DH and I met in our college band--he was in engineering and I was in nursing. We both enjoyed practicing our chosen professions until taking early retirement in 2000. We celebrated our 56th wedding anniversary in 2018. This Christmas, we've had both of our sons and their families (8 grandchildren aged 21 down to 9 year old twins!) with us. Cooking for 14 is really different than for 2!
I had only the two pregnancies and breast fed both boys. Also, took H R T for about five years since when I entered menopause the thinking at that time was that H R T was cardio protective. It took three different physicians to convince me I should do that. Five years later the research indicated no heart protection activity and I stopped immediately. It is highly likely that the H R T contributed to my B C.
Once I retired from university teaching I began to develop my interest in two areas, each of which could be full time: quilting and genealogy. Haven't done a lot of either in 2018, what with 2 major and 4 minor surgeries plus radiation. I've been focused on healing, eating healthier, increasing my exercise and taking off some of the pounds that may also have contributed to the BC.I
Here in Texas it isn't quite 2019 yet but we just watched the ball drop in Times Square--that counts doesn't it? My eyelids are starting to droop so I'll sign off for now.
As we say in Texas, Happy New Year to all y'all!
0 -
beaver, we have a whole section for over sixties. I will soon be 69. I figure I have another 15 years to enjoy.
I think the assumptions behind the recommendation for no mam mos after sixty are that it would likely be slow-growing, and other conditions would get the person first. Then there are the outliers. I don't know the exact wording, but a review would be in order.
0 -
I found Cookie's pod casts last spring. She's back after taking a year off with her own cancer diagnosis. She has some great insights about her journey through the darkness. https://realweightlossrealwomen.com/wlmr105-learned/?fbclid=IwAR2XeuvuRvYJiHASqcVV9Df2i33RWa5sc70TyUEHl8gXg3sFQbyzlCYG_x4
0 -
Just saying Happy New Year to all!!!! Hoping 2019 is happy and healthy for all!!!!! I celebrated east coast new year's last night. I'm on west coast...and was asleep when 12:01 rolled around west coast time! I loved watching the celebrations around the world.....
0 -
Beaver - welcome to the boards and the place none of us want to be. I was 70 when diagnosed and had my BMX. My surgery was 3 weeks before my 70th birthday. Happy birthday to me! It has been a tough year and a half but what saved me was the tremendous support from our friends/neighbors and even more from my quilting! I never really sewed but discovered my passion for quilting about 5 years ago, after we moved to Florida. It was my lifeline and it continues to be my "go to" when I need to escape and forget about cancer.
I plan on doing as much as I can to live a long and healthy life. My mum died of natural causes (who does that??) at 104 and my dad was 96 when he died, also of natural causes. Mum was amazing - she never took a pill her whole life but did drink a Guinness every day for either dinner or lunch for years. We all laugh and say that's what kept her so healthy! Wish I liked Guinness!
0 -
MC - what is the name of the over 60 topic?
0 -
Here we are-- a place to get away from the "kids". https://community.breastcancer.org/forum/104/topic...
Sorry I didn't link it, but I was on my Kindle atm.
0 -
thanks! We were out for a couple of hours so no worries on when you sent it!!!
0 -
Welcome, Beaver!! This is my favorite place to visit.I think you'll like it here.
0 -
Hello, I was dx at age 64. I had been having 6 month follow-ups on my right breast for about 3 years, then as told I could go one year as everything appeared normal. My next annual screening came back birad 4, needed biopsy and that's all she wrote. It was exactly one year after my sister was dx's with BC, though she was triple negative and I was hormone positive.
My sister's story was the same - mamo's every 6 months to monitor an area of concern and then finally told she could go one year and bam next annual was positive for BC.
We had all the genetic testing done and everything was negative. We are both back to or lives having finished tx. I'm married and have a 23 year old dau just finishing grad school. I've recently retired from full-time and work about 10 hours a week aftr working full-time all through treatment. Truth be told, working helped a lot!
Wised - I took clomid about 2 years, one child after age 30 and was on HRT for years after early menopause.
0 -
Hi Mickey, welcome! You are another one of us added to the growing Clomid list. I took it in my 20s and then again in my early 30s. I was never able to conceive though I have 2 beautiful daughters we adopted at birth.
0 -
Mickey..welcome ..gosh another one of us who took Clomid !
0 -
I was curious. I just did a search on "Clomid" on the boards here. There were 6 pages and I counted 82 ladies who said they had taken Clomid or a close relative (sister or daughter) had. If there are that many HERE, imagine how many there are worldwide. There HAS to be a connection. Interesting?!
0 -
I asked the question about Clomid on a couple of my Facebook BC survivor groups. I got this response from the Susan Komen site. Very good explanation. It makes sense:
Hi Becky, this doesn't answer your question, but provides some background information you may find helpful. From komen.org's risk factor table that breaks down all available publish and peer-reviewed research: Fertility drugs stimulate the ovaries, causing estrogen levels in the body to increase. Because high estrogen levels are linked to breast cancer risk, it's been suggested the use of fertility drugs might also increase risk. Most studies, including a meta-analysis of 20 studies on the fertility drug clomiphene (Clomid) and 22 studies on other types of fertility drugs, have found no link to breast cancer. Some findings with 10 or more years of follow-up suggest fertility drug use may modestly increase breast cancer risk. One study with 11 years of follow-up found an increased risk only among women who had given birth and used the fertility drug clomiphene. However, another study with 21 years of follow-up found no increased breast cancer risk among women who fertility drugs. Although most studies show fertility drugs do not increase breast cancer risk, more studies with long-term data are needed to confirm these findings.
0 -
Hello. I am new here. I came to this thread looking for other Stage IA, Grade I women who may be feeling that the standard of care may actually be a little bit of an overkill.
I had an 8mm IDC detected on a yearly 3D screening mammogram that was completely excised with lumpectomy. No lymph node involvement. My oncotype is 9, so definitely no chemo. The tumor was strong ER/PR+ (99% and 96%, respectively) and HER2-. I am premenopausal (43 at diagnosis in 10/18). So of course, the standard of care is radiation and Tamoxifen. What bugs me is that no one seems to have any information on the likelihood of recurrence with lumpectomy alone for a <1cm stage I/grade I tumor. They tell me that radiation reduces my changes of recurrence up to 35% and that Tamoxifen reduces it maybe by up to 50%, but of what? Say for instance, if my chances of recurrence from a lumpectomy alone are only 2 or 3% to begin with, then radiation and estrogen antagonists would add such a miniscule benefit..is it even worth the time, out of pocket expense and potential side effects that come along with such treatments? No doubt, if I had a higher grade, more aggressive tumor, I would not be questioning any of this...but fortunately that is not my situation. Perhaps no one really knows or is willing to stick their neck out and say that lumpectomy alone is likely "curative" for women like me. If anyone could share thoughts or experiences that would be great. I am an otherwise healthy, active, optimistic person and certainly don't want to unnecessarily alter an otherwise good quality of life.
I also find interesting the discussions on fertility drugs. I was never on those, but I did take oral contraceptives for 17 years, from the time I was 17 until I was 34. I mostly took them to regulate my cycle. I have wondered if that could have predisposed me to developing breast cancer at a relatively young age. I also began having problems with fibroids in my early 30's, which I am quite sure was related to the oral contraceptives, and ended up having a total hysterectomyJuly 2017 as the bleeding became continuous, very heavy and unbearable. I do still have my ovaries, as there was no reason to remove them at the time.
My mother did have breast cancer too, but she was 62 when diagnosed and had been on HRT, so I don't know if you can really consider that "family history" or not. All genetic testing prior to my lumpectomy was negative.
0 -
dolcevita, I shared your concerns. Mine was a 1 cm tumor and also grade 1. My Oncotype score was 3 and my ER was 100% and PR was 99.89. My Ki67 was 3.3%. My concern with not doing radiation would be because of cells that can be displaced by the initial biopsies themselves. As I understand it, that is one of the reasons that they do radiation. If you had a surgical biopsy that might not be as much of an issue. My first of eight nodes taken had 2 separate micromets. Because of the month between my biopsy and lumpectomy I have wondered if the multiple biopsy samples taken via core and needle methods caused the micromet issue. The node may have just received debris from the biopsies. Nobody can say for sure that this happened but it is definitely possible and something to consider.
0 -
Hi dolcevita,
I think those are really valid questions, and I wish there were more fine grained sorting of risk factors. It seems to me the data must be out there, but I suppose it takes a lot of labor and resources to calculate it.
I think doctors and insurance companies consider radiation and tamoxifen/AI to be relatively very low risk/impact interventions with strong evidence of *general* efficacy (i.e. across stage 1 in general), so they aren't necessarily motivated to push so hard on getting women out of it. The furthest they've gone is to suggest that women 70 and up *might* skip radiation.
Local recurrence rates with lumpectomy alone are pretty high, even for low risk. The evidence for radiation preventing local recurrence is very good. Is it worth it just for that? At first I didn't think so, since the evidence shows that the benefit for overall survival is real, but not very high. But then, has all been such a pain in the neck. I feel lucky that my surgery went well cosmetically, but how many times do I want to risk that? And the recovery from the SNB is still annoying. Plus who knows whether my health insurance will be as good in the future, and how stressful this would be to try to deal with, if I had crappy health insurance. Even if it were 'only' a local recurrence. (I also suspect, as letsgogolf said, that the high risk of local recurrence is at least somewhat related to issues with needle biopsies, and I wish there were more straightforward information on that).
The tamoxifen, it's so similar. The doctor says 50% reduction in risk. Also says my risk is low anyway. It made it hard to get motivated to take it, especially reading about some of the bad side effects people have. But I also read/heard of plenty of people having no or very mild side effects, so I figured I should at least try it for a while. Pushing on me I also have that my mother died of estrogen positive breast cancer. I also notice whenever someone on the boards who didn't take ant-estrogen drugs at all, or for just a short time, has recurrence. Is that statistically meaningful? Probably not. It's likely intense confirmation bias, because who comes back to the boards after all. But it helps me feel better about the decision to try the tamoxifen.
In the end I think it's just what we can live with.
Doctors see lots of patients who all have different health situations and risk tolerances, and it's much simpler/safer for them to push the 'safest' known route. It took a LOT of studies and validation before doctors felt safe enough to rely on a low oncotype score to skip chemo, and compliance is still not universal. Hopefully in the future we'll get tests similar to oncotype to pre-determine efficacy of radiation and hormone treatment. But for now...
0 -
I was in bad shape emotionally after dx and I totally threw a fit about taking tamoxifen. No oncologist will ever tell you not to take it. After many months of delay and after I was in a much better place emotionally I tried it. My side effects were garden variety. I questioned the need to take it base on my low Oncotypedx . My onc said “ that’s a lot of faith to put in one number.” It IS a decision based on what we each can live with. In the end it was easier for me to take it, than to know I wasn’t doing everything I could do to prevent recurrence. I slogged through four years of three different hormone therapies and I quit five years out from diagnosis. My onc was ok with that.0
-
As far as taking Tamoxifen goes I was very scared to start taking it .The only other medication I can usually take without side effects is Tylenol...but I was too scared not to take it either ...I was very pleasantly surprised to have no side effects at all ...
I decided to try the Tamoxifen , and then decide . Some people have terrible side effects and have to stop ..but there are lots of people who have none .
0 -
I was scared to take Tamoxifen, too. I've read and heard of many bad side effects. But I was very luck to not have side effects with it. I was recently switched from Tamoxifen to Arimidex. The only thing I have really noticed with it is a little bit of nausea in the morning and a slight headache until I eat something. The last few nights I have been having trouble sleeping, too. I don't know if that's related or just life itself. There's been alot going on. So I will just and see if that sorts itself out.
0 -
Just found this thread! I was classified as Stage I after my BMX surgery. Starting chemo next Monday as my MammaPrint came back high risk, Luminal B.
I've had issues since I was 13 when I first got my menstrual cycle. On the pill for 10 years until I got pregnant with my son. This was pure luck as I got pregnant right after I stopped taking the pill. I could never get pregnant after, my cycle was just so messed up, even tried AI. Only to discover I had endometriosis which resulted in a hysterectomy with only my right ovary remaining. On top of this I was dealing with nipple discharge on and off for 18 years that was a result from a microadema on my pituitary gland. Test after test it felt like for female issues. Now, BC.
Whatever will be, will be!
0 -
Jenkins...welcome ..sorry you have to join our group ..but lots of caring women here ..We will be with you on Monday when your chemo starts
0 -
Lucy55 - Thank you. Means a lot to me.
0 -
Jenkins, thinking of you on Monday!
0 -
Jenkins00, you will be in my thoughts & prayers Monday!! Let us know how it goes.
0 -
Jenkins, first I'm sorry you found yourself here. I'm not a regular on this thread. I just wanted to chime in that I had essentially zero side effects with my 4 rounds of TC. I walked 3 miles everyday. Including chemo day. Took day of and 2 days after treatment off work to hydrate, rest, pee alot lol. Then back to work to a fast paced job as a nurse. I'll admit , I'm the exception to the rule. Just wanted to give you hope. Please feel free to PM with any questions. Joining the chemo January 2019 group would be helpful. I found it additionally helpful to talk with those that are on the same regimen. Please dont get ahead of yourself and worry too much. You will get through it and it will be over in a snap! I will bottle up my experience and throw it your way! Take care! Deb
0 -
I have a 1.9 cm plus a second tumor that’s only 8 mm
0 -
How are you doing Penny?
0