Stage 1, grade 1 and pre-menopausal
Comments
-
Does cessation of a menstrual cycle, after several months, mean that estrogen levels are low enough? My mother also entered menopause at age 55. I am now 50 - after surgery and starting Tamoxifen, haven't had a cycle in 5 months. Should I go a year without a cycle, I'm wondering if Lupron would still be recommended? I will also ask this of my oncologist in the States - Budapest onc doesn't answer my phone calls.
I'm also curious that the Budapest oncologist commented several times on my appearance being much younger than my biological age. This seemed to be an important factor in his recommendation of ovarian suppression. So if somebody looks younger than their age, estrogen levels must be high??
VR Hope that estrogen stays at a low level for you.
0 -
Joy...The only true way of knowing if you are in menopause is guided by the results of the blood test over one year. I also appear very young looking for my age. That also applies to my mother and sister as well. We are often mistaken for being much younger than our biological age.
0 -
Thanks VR. I am hoping to start ov suppression, once I find a physician here to accept me as a patient and administer it. Feel like I should be doing more than just taking Tamoxifen.
0 -
Sherry please stay!!!!
We can change the name to grade 1, stage 1 and diagnosed pre-menopausally!
After all, with all the treatment we are having, many of us are effectively menopausal!
Hugs0 -
Re menopause this is my home territory as an endocrinologist. VR, as ever you are spot on with your answers. Joy if you remain amenorrhoeic and your estrogen levels are low along with high levels of the pituitary hormones LH and FSH, then you will not need Lupron but this should be monitored for at least a year as there can be fluctuations during this time. If you estrogen wakes up though, you will know as you will get a period.
Your youthful looks can be accredited to your wonderful genes... It's not just estrogen!0 -
I had my uterus removed when I was 32 I will be 50 next month. Because I do not have periods they have been monitoring my hormone levels every 6 months. So this time all my levels said post menopausal. I too have good genes in my family. I do not look my age nor does my mother.
Annice I will stay and I'll let you guys know what my MO says tomorrow.
0 -
Sherry re your hot flashes, as you know tamoxifen can cause these. From your symptoms and blood works it sounds like you may be peri menopausal and so your symptoms may continue to fluctuate over the next few months
0 -
Yes Annice the hot flashes started with the tamoxifen. When I was on my 6 week break for surgery they went away. Now that I am back on tamoxifen they have started again but this time mostly in the late afternoon/evening but not at night like before. Strange, but I'm really glad the nightime ones have stopped. Now if I can get the vivid dreams to settle down maybe I could actually sleep at night.
0 -
Hi Annice and Sherrylc, Thanks for the info. I haven't reached a decision yet but after reading for 2 full days, I learned so much information from this board. I can't get a second opinion anymore from other facility because the process would take more than 2 weeks before I could see a doctor. Well that was the info that was given to me when I called Stanford and UCD. And my MO wants to start the chemo next week if I wanna do it. So, I decided, I will just see a different MO in the same system. She might tell me the same but I still wanna hear her opinion. Can't wait for this decision making to be over then I can join you guys discussing about menopause symtoms
Will I become an angel when I menoupause ( no more mode swings )? 
My husband would love that. Just looking for some good things to look forward to and maybe I can get you guys to smile also. 0 -
VR and annicemd Thanks so much for the information - I feel less alone in this. I now know what to ask the onc in the States and can move forward from there.
p22nut5 Good luck in the decision making process - this can be a tough time. Once the plan is in place it is so much better.
Wishing all of you a good weekend ~
0 -
so i went to my MO yesterday and talked about my hormones. Of course he was happy that I am now post menaupausal but was suprised it happened so fast. Anway he said he wants me on Tamoxifen for a total of three years and then we will discuss the AI's. So two more years to go on Tamoxifen. But the good news is I go back in three months and get my zometa treatment and then I get to graduate to every 6 months. That is if my blookwork continues to look good.
0 -
fosamax??? One pill almost did me in. I had a severe allergic reaction to it. My doctor said it would take at least 6 weeks to get it out of my system. My legs and hips hurt for a few weeks. After taking it I had a difficult walking for a few days. I broke out with a rash, fever, tongue and throat swelled and short breath.. I lived on benadryl for a week. While recoving from the effects I did a lot of research on it... this website open my eyes for sure knowing that I'm not the only one out there to have a reaction...
http://www.askapatient.com/viewrating.asp?drug=20560&name=fosamax
Annicemd my third cancer was a grade 1 stage 1. I had a simple lumpectomy only. I didn't do any extra test. I am comfortable with not doing more than surgery. My right breast is a different story it finally had to go. One of my friends mother had a lumpectomy in her 30's only and is cancer free to this day. Also...from what I understand more women are dx age 50+ . Women in their 60's that I know had high grade cancers...and myself dx also with the HER2+++ ... which is very aggressive. Cancer knows no age.
0 -
eveberry your reaction sounds terrible. I took Fosomax for about 6 months and never had a reaction to it. Yet I am allergice to ibuprophen and those types of drugs.
0 -
Evebarry, allergy is a problem with these drugs. It is well recognised and of course that experience will put you off trying other bisphosphonates. You are so right that cancer does not follow rules, only patterns, and there are always exceptions. It is always good to hear about very long term survivors like your mothers friend!
0 -
FOR Those who are on Lupron ..... i was wondering if anyone has read any of the info about the drug ... on sites such as
http://www.lupronvictimshub.com./NLVN.html
I started Lupron in Nov at 39 ---- and I hate this drug .... for the first 4-5 days after I get the injection ... i am in agonizing pain all over my body .... feels like my body is ridden with arthritis ..... also awful muscle pain ....... - not to mention my joints ....fingers, wrists, feet ...shoulders .... "pop" amd get stck .....last week after my 3rd shot (every 3 months) ... my oncologist gave me dalaudid .....which helped for 2 dys ...
Just wondering what your thoughts were on the safty of this evil drug...
Last night was a typical sleepless night ... (prior to lupron and arimidex ... never had any of this?0 -
SpringFever....Rather than ask if any of us have had issues with ovarian suppression, why not discuss your issues with your doctor and ask if there are ways to mitigate the side effects. Without a doubt, with any treatment, some patients do better or worse than others when it comes to side effects. It sounds like you are having a rough time and I think you need to revisit your protocol with your doctor. I hope you will be feeling better soon.
0 -
VR is right spring fever, your MO should discuss an action plan with you in view of your problems. Your symptoms sound like the worst end of the spectrum of menopause and of course, with Lupron, we are trying to achieve menopause, so in that way it's doing it's job! Are you getting hot flashes too? Check that you are not vitamin D deficient which will make the musculoskeletal symptoms worse and ask him if he could check you out for inflammatory joint problems (arthritis) which may have been un-masked by the Lupron. They can check for these relatively easily with blood tests.
Good luck and so sorry you are suffering.0 -
Just checking in on a Saturday night ... As always the information is amazing! Just has hysterectomy last monday so guess I am menopausal baby! But you are stuck with me Annice. Zoladex is quickly becoming a thing of the past and believe I will be meeting with MO soon to discuss AIs.... Also revised left foob a bit while in there .... Was supposed to be nipples surgery but overall symmetry / result needed priority....
Thank you guys for keeping conversation flowing... I hope everyone else is doing well and moving forward. . . .0 -
Hi Kelleyod, I hope you are
recovering well- big operation with hysterectomy and foob revision. I think I may need some foob revision for symmetry too but not for a while, I am still recovering from an infection. I hope your menopause symptoms are the mildest possible. I do like the expression menopause baby0 -
Annice, Thanks for leading me here. I've been frustrated with the issue of being young/stage 1 and the lack of research out there for 2 years now! One of my recent frustrations is that I realized that even the oncotype is based on research of post menopausal women. I, like you, was determined to do EVERYTHING I could to make sure this doesn't come back. I have kids to raise and I intend to be around to know my grandchildren. As I told my bs when I was diagnosed, I have another 60 years to live! I find it interesting that you're less likely to have BMX in the UK. I insisted on BMX, research doesn't show that it improves my survival but survival rates decrease over the many more years we have to live and the likelihood of it showing up on the other side just seems logical to me. Research only seems to look up to about 10 years--what about the other 50!?. I also have a strong family history though (BRCA-). Hope your infection is clearing up well!
0 -
Hi Julie, welcome to the thread! Yes I had UMX and I suspect I will have the other one done at some point for all the reasons that you point to. It's preventing a new cancer that that prevents. I thought oncotype had data some in pre menopausal women but I will check e literature and voracious reader might already know, she is a medical encyclopaedia!
0 -
Don't know if this helps but just throwing it into the mix. I was premenopausal...Drs said it was 50/50 whether to have chemo ........we decided against it. My tumour was actually Grade 3..you can read below what I decided to do.
Anyway...its 20 years later and I have had no recurrence...and certainly no regrets re my decision.
Good thread...interesting discussion.
jezza
0 -
Thought I would throw in that I am 2 wks post ovary removal. I am 52 and and had lumpectomy in Dec 2011 and 6 wks rads. I was pre-menopausal. I opted for the ovary removal as my insurance that this is never coming back plus I now have peace of mind knowing I will never get ovarian cancer. I will not take any hormone replacement. My decision after countless hours of research. I am brca negative even though strong history of breast cancer in family. My mom is a 35 yr survivor. I have hope based on my mom's history.
0 -
The validation of the Oncotype DX test continues to evolve. Today, the NCCN and ASCO guidelines DO NOT differentiate between Pre and Post menopausal when recommending the Oncotype DX test since they are confident with the data validating its utility for both. Questions are often asked about whether the data is as strongly validated for pre-menopausal women because most of the breast cancer samples used in the original study were of postmenopausal women. Likewise, the data was first collected on women who only were taking Tamoxifen, since AIs were NOT in use 20 years ago. Furthermore, while rare subtypes of tumors like mine, mucinous, were included in the original study, the scores were NOT as strongly validated as they were for the more common types.
Since the FDA approval of the test, the Oncotype DX test continues to be tested for its validity and utility. Most people are aware of the on going TailorX trial that is looking at the intermediate range. The folks who make the Oncotype DX test continue to update on scores relating to those of us with rare subtypes which appear to be consistant with their original data. The Oncotype DX test is now being reviewed for patients who are node positive.
IMHO, I think the reason why patients question the validity of the Oncotype DX test for premenopausal women is because fewer premenopausal women get breast cancer, and were less represented in the original study, so obviously the data would be more strongly validated for postmenopausal patients. Keep in mind that a small number of men get breast cancer and the test is being used for them as well.
Remember, the Oncotype DX test is just one tool in clinically evaluating whether or not chemo should be part of one's treatment.
Annice....Hope you heal quickly.
0 -
For anyone interested in reading a current overview, I highly recommend you google the following article:
Evolution of the 21-gene Assay Oncotype DX from an Experimental Assay to an Instrument Assisting in Risk Prediction and Optimisation of Treatment Decision-making in Early Breast Cancer
Christian Jackisch, European Oncology, 2010
0 -
Jezza, thanks so much for sharing your story it's wonderful for us to hear. 20 years is awesome. I hope you celebrated that anniversary big time
0 -
voraciousreader....I wasn't aware that most of the women used for the Oncotype originally were postmenopausal. That makes me a bit more nervous. Have you heard whether they are going to follow the women who have the test done now to see how things work out for them? Wouldn't that be a good way of further validating their test scores in the future?
0 -
Barb....I did some further investigating. First off, I want you to be aware that during the development of the test 30% of the TUMORS that they studied came from women who were <50. For statistical purposes...they use the age of 50 as the demarcation between pre and post menopausal. So basically, the majority of TUMORS studied came from postmenopausal women who they already knew the outcome of. Despite the fact that ONLY 30% of tumors came from premenopausal patients doesn't mean that the numbers that they came up with were not statistically significant. Even for my type of breast cancer, mucinous, which occurs in fewer than 3% of breast cancer diagnoses, they evaluated an even smaller number of tumors. There have been several follow up studies for mucinous and the other rare types of "favorable" subtypes and the recurrence scores seem to be stable, which gives me comfort and should give all of us comfort as well. A lot of evaluation went into choosing which genes were important to the development of recurrence. Rest assured that they would not have been able to market the test unless they were able to reproduce the results. They have NOT finished studying the results. If you google search the study above, you will note that the validity and utility of the Oncotype DX test continues.
ASCO meets on June 2 and I counted several lectures on the Oncotype DX test. Furthermore, I am excited about a lecture I noticed that is going to be on Zometa for early stage breast cancer.
0 -
Barb...if you read the Jackisch study he mentions that ",,,the validation study in NSABP-B14 demonstrated that the RS provided SIGNIFICANT PROGNOSTIC POWER INDEPENDENT OF AGE AND TUMOR SIZE."
0 -
I saw, further back, some references to a "soft trial" what is this exactly? When is data supposed to be out on it? I also saw some reference to getting more detailed decision help from NCCN, how does this work, do the MO's use this? Annice, I wonder if important links could be added to the intro of this thread as they come along in conversations? I tried to write some as I was reading but I clearly had some writing errors and I'm too lazy to go back through all 11 pages--not that I expect you to, just saying as they come along, if you see something that could be helpful to people, adding it to the top could be very useful.
Voraciousreader, you certainly are a wealth of information! What you're saying makes sense but what I'm not clear on, is the fact that when I was diagnosed I was labeled a "young woman" which says that my cancer is "different". What makes it different, my age or the fact that I am sooo pre-menopausal. I would imagaine that the estrogen levels are quite different in a 20 year old vs a 30 year old vs 40... So yes it brings comfort to know that they studied tumors of women under 50 but there's also a very small percentage of that 30% that are in their 20's and 30's. Is there any kind of breakdown of what the findings were for different types of tumors such as yours and those of the very young or are the findings all lumped together? I'll google the suggested article.
Annice, I'm curious, since you've gone into chemical menopause, why not switch to an AI?
Kingjr, I'd love to hear what you're overall logic was in making your decision for ooph. I'm on the fence, it just helps to hear the different lines of thinking.
0
