Stage 1, grade 1 and pre-menopausal
Comments
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Annice,
Summer 2012 CA 125 is a 4(<35). My metformin RX- family doc- runs these tests every 6 months. I know nothing about ovarian imaging. VR and Annice, I appreciate you both telling me I can take my time and not feel pressured. I do feel pressured. I also have always felt its important to treat your body and health well, and keep your parts. But at this point, I believe they have scared me to think that I am making a poor choice...
Thanks so much ....
CR
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Chocolate its about which works best for you-the balance between taking your time and being happy with your final decision, and gaining closure and getting on with your life!
I notice that your diagnosis was almost 2 years ago. Is there a reason why your docs waited until now to request ooph or have they wanted to do this all along? For you the other issue is, if I remember right, you are not taking tamoxifen which may add risk and maybe they feel if you had side effects with tamox that you may do with Lupron?0 -
Annice, thanks so much for your reply. I had my bm end of 1/11. I had a really great MO who concluded I should have lupron shots toward the end of 2011 but she she quit. She left the practice and went to CA. So, I thought the big city MO was going to have me have Lupron this past summer when to my surprise she said no. I was confused and asked my surgeon' office if they recommend anyone. Anyway, I made my return visit to my surgeon(2.5hours away) and their recommended MO on the same day this past week because of distance / work. This weeks MO wants ovary removal because of ovarian risk and feels that tami would not add that much benefit because i have very little breast tissue (had spouse who was at work- listen to his reasoning on phone) just to make sure I got it. I hope that explains the time lapse....My other option is to ask for a new MO where I used to go and ask for Lupron- this is a very conservative area where patients are patients and there is a hierarchy I am not comfortable with...so its a challenge.
thanks for my ramblings.
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Annice and all ( my update)
I went to see a local gyn surgeon 5 weeks ago who told me that I would feel worse If I had an oopherectomy. She said my symptoms would be worse and there would be nothing she could do for me. She said she would contact the 2 MO's and get more data. Well 5 weeks passed - I called before Thanksgiving to remind her of me. (ok- I was really also upset that she had not called me back). Anyway, I did get a call a week later in which she had not accomplished anything but would try. She had lost one doctor's info and the other she had left a message she stated (okay I was definitely un-impressed). So I did call my breast cancer surgeon and his phone message to me is the following. He does not endorse ooperectomy for women who are not brca positive ( I am braca and bart negative) and if I want to pursue this consult a gyn....
So I am still confused. What makes my confusion worse is at 51 plus there are days in which I forget things (keys, where I put the credit card.....) and I would dread having an increase in brain fog. But at the same time should I just do this?
Thanks for reading my rant.
I love the weekend and chocolate.
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Chocolate... Long story short. Two weeks ago, neighbor called while I was on the phone. Told them I would call back in a few minutes. Forgot to call...remembered to call 30 minutes later. Apologized to caller. Told them I forgot...and then...remembered to call. Asked,"What's up?" He replied, "Would you look out your window and check to see if I closed my garage door?" Not to be out done, I have to tell you that as bad as my memory is, and as awful as my neighbor's memory is, because I have had to remind him to close his garage door more than a dozen times, the DH tops everyone in the lack of memory department. Every time and I do mean EVERY TIME he leaves the house, within 30 seconds he returns because he forgets something. That's after spending a half hour each day trying to locate things before he steps outside. Used to drive me NUTS. Now I find it amusing because since it NEVER bothers him, why should I be bothered? So, I'm not! I find that in order for me not to forget things, it takes more effort in being organized. I think at a certain age, our brains become more fettered and we just need to accept that we need to put more effort into staying on point and be especially organized. Quite doable...if we remember...and if we DO forget? So what? I am not trying to diminish the importance of memory, I just think we need to put it in perspective. Forgetting WHERE you left the keys is NOT as big an issue as WHAT a key is for. If you think an ooph is going to compromise your memory and it worries you more than your risk of recurrence, then don't do it. It's really more about perspective. Give it some thought...
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Chocolate, I can't remember (ha ha that's topical:) if you told me whether you have had your hormones checked. It sounds to me that you are menopausal or perimenopausal and if this is confirmed on blood tests which are LH, FSH paired with estradiol and your primary care phycisian can check these, then I suspect ooph would make no difference to your symptoms in fact because in perimenopausal estrogen tends to yo yo this can make symptoms even worse. As I have said before if you have a short acting zoladex shot you will get one months worth of full menopause which will wear off after that time and it would tell you exactly what to expect symptom wise from ooph. In UK primary care physicians give zoladex and I don't see why there seems to be resistance from your medical teams to trying this.
Hope that helps
Annicemd0 -
Hi
I've been reading this board and it sure is long, thought I'd chime in. I'm 34, been on the pill since I was a teenager, with a few breaks of a couple of years. Could not cope with high stregth ones and have always had the lowest dose. Have had a wine or two after work most nights for the last few years and have never had kids. Had a cyst on my ovaries twice but have not been diagnosed pcos. I have an average bmi and exercise regularly.
I'm really confused as my surgeon said another 6 months and the grade 1 I had would probably have been a grade 3. Can grades change?
I had a .6mm micromet in sentinel node and I've been referred to MO for chemo and hormonal therapy discussions.
On the margin of my excision, 2cm from tumor, surgeon did an extra shaving and there was a 4mm adh or dcis which they are not worried about, and my report says margins were clear and tumor was 8mm at nearest margin. Is this weird or what?
Would chemo kill that adh or dcis thing or should I be pushing for further surgery? Surgeon said he could be 99% sure if he took my breast off it would be clean. Hmmm.
Thanks for advice, I think I've posted here because I belong AND because you ladies seem so informed.
Xx kk0 -
chocolate To give you my experience - I'm 51 y/o also, and my MO also doesn't recommend an ooph unless BRCA positive. She did recommend suppressing ovaries, thus I started Zoladex injections 4 months ago and so far have had minimal side effects other than increased hot flashes. Do I forget things? Absolutely - but it's been no better or worse than before. In fact, I've felt more even tempered after Zoladex than I have in a long time. I'm more concerned about decreased bone density and heart issues brought on by menopause.
No doubt everybody reacts differently. Just wanted to share what my experience has been.
Enjoy your weekend and chocolate!
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Kiwi....Yay!!! You found us....finally!
You DO belong here! Now....regarding chemo and adh and dcis. They are considered NON-invasive and chemo is of no value whatsoever to treat those cells. Chemo is recommended for invasive cancer cells. So the Grade 1 tumor trumps the adh and dcis when deciding a treatment plan. I don't recall if I mentioned to you earlier to look at the 2012 NCCN breast cancer treatment guidelines? You can register online at the NCCN's website and then look for the PROFESSIONALS guide. It is way more informative than the PATIENTS guide. It is a great resource. It should provide you with enough information to begin your discussion with the MO. Don't forget to read pages 93-97 in the guidelines. Those pages focus on all of the clinical studies pertaining to endocrine therapy.Regarding the Grade of the tumor changing....Yes. a tumor's characteristics can mutate. Often we will hear of women who have had recurrences and when they do the pathology, they find out that the characteristics of the tumor changed. But regarding length of time...I don't know how long it would take for that process to occur. Your doctor said 6 months. I would question him or the pathologist further about how accurate that statement is. Regardless, it isn't presently relevant to your situation, so I wouldn't focus on that right now.
On your other thread that you started regarding the Oncotype DX test for sisters in NZ, I gave you the link for the advocate at Genomics to find out if you can get the Oncotype DX test. Here it is again:
I would also check with your surgeon and see if s/he can get the OncotypeDX test done.
Right now I would focus on trying to get the OncotypeDX test done on your tumor before you decide whether or not chemo should be part of your treatment plan. As you can see from this thread....you have many, many options available to you. Good luck and welcome.
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Joy....I don't recall if we had the discussion regarding Zometa infusions for the bone density AND for prevention of recurrence. I'm going to receive my 5th infusion this month per the Gnant study. I'm really excited about this week's upcoming San Antonio Breast Cancer Symposium. He usually updates the crowd on his findings. Regarding recurrence, I am very encouraged by his data supporting the use for people like myself. With regard to bone density protection, which the drug was originally created for, I am underwhelmed. In March...following my 4th infusion, I broke my foot. I was NEVER an advocate of bone density drugs in the first place because I thought they ran the risk of making bones more brittle. I wonder if taking the drug had something to do with breaking the bone in my foot. John Abramson, MD wrote a terrific book, Overdosed America and Chapter 13 is devoted to bone density drugs. Here's an excerpt:
"In 1995, Fosamax, the brand name for alendronate, was the first of the new generation of drugs approved by the FDA for the treatment of osteoporosis. Fosamax works by attaching itself to the surface of bone, interposed between the osteoclasts and the bone the osteoclasts are trying to absorb. Randomized clinical trials of Fosamax published in medical journals show dramatic reductions in the relative risk of hip fracture for women with osteoporosis. In a study published in JAMA in 1998, for example, women with an average age of 68 and a T score of - 2.5 or less who took Fosamax for four years were 56 percent less likely to suffer a hip fracture than women in the control group.
This sounds like very good news for women with osteoporosis, but how many hip fractures were really prevented? With no drug therapy at all, women with osteoporosis had a 99.5 percent chance of making it through each year without a hip fracture -- pretty good odds. With drug therapy, their odds improved to 99.8 percent. In other words, taking the drugs decreased their risk of hip fracture from 0.5 percent per year to 0.2 percent per year. This tiny decrease in absolute risk translates into the study's reported 56 percent reduction in relative risk. The bottom line is that 81 women with osteoporosis have to take Fosamax for 4.2 years, at a cost of more than $300,000, to prevent one hip fracture. (This benefit does not include a reduction of less serious fractures, including wrist and vertebral fractures. Most vertebral fractures cause no symptoms.)
[. . . ]
What about using these drugs to prevent osteoporosis? Fosamax and Actonel were approved by the FDA to treat women with osteopenia based on studies that showed that they significantly increase the bone density of these women. It is important to remember, however, that bone density is only a surrogate end point; the real reason for taking these drugs is to reduce fractures, and hip fractures in particular. The study of Fosamax published in JAMA in 1998 (mentioned earlier) also included women with osteopenia. Did Fosamax reduce their risk of fracture? The results show that the risk of hip fractures actually went up 84 percent with Fosamax treatment.* The risk of wrist fractures increased by about 50 percent (that figure may be statistically significant -- but this can't be determined from the data as presented in the article).
How can it be that drugs approved for the prevention and treatment of osteoporosis succeed in increasing bone density but have such limited impact on reducing hip fractures? The answer can only inspire awe at Mother Nature's elegance. There are two types of bone. Eighty percent of the body's bone is made up of the hard and dense outer layer called cortical bone. In some areas of the body, bones also have an internal structure of trabecular bone, which works like an organic three-dimensional geodesic dome, providing additional strength in the areas of the skeleton most vulnerable to fracture, such as the hips, wrists, and spine.
The lacelike structure of trabecular bone creates a much greater surface area than the densely packed cortical bone and therefore allows the former to be more metabolically active when the body needs calcium. Its greater metabolic activity also makes trabecular bone more vulnerable than cortical bone to the changed balance between osteoclast and osteoblast activity. As a result, when bone mass starts to decline in women, trabecular bone is lost more quickly than is cortical bone. Once the architecture of these internal struts is lost, there is no structure left onto which calcium can be added. (See Figure 13-1.) The new bone, formed as a result of taking the osteoporosis drugs, is then formed primarily on the outer part of the bone, the cortical bone. This increases the score on the bone density test but does not necessarily contribute proportionately to fracture resistance."Sooo....lots to think about.....
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Hi kiwikid, 6 months would change your stage but not your grade. I reiterate what VR said about DCIS and ADH and chemo. It's the mico met that might dictate that sort of attention depending on aggressiveness as judged by oncotype. I wish you well with all your decisions it's not easy re more surgery/ hormone therapy/ chemo decisions. It gets easier to deal with once your treatment path is clear.
Hugs
Annicemd0 -
Annice, VR and Kiwikid,
Thanks for responding. I will call old MO's office (she is gone but others are there) and start the process to see if I can get the Lupron/ or Zoladex shot. The worst they can say is- No or make me have an appointmet to say no. But its a direction and I can try. Thanks. CR
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Thanks for your replies. Do you think I should ask for a mx? I'm really concerned about what else might be going on in there, given they didn't know about the adh dcis thing
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http://www.sabcs.org/PressReleases/Documents/2012/9957ec3ea6c7a19b.pdf
Extending Duration of Adjuvant Tamoxifen Treatment to 10 Years Reduced Risk for Late Breast Cancer Recurrence, Improved Survival
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This is the latest study coming out of the distinguished annual San Antonio Breast Cancer Symposium
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Interesting, VR. Thanks for sharing the Tamoxifen study.
And I appreciated the Zometa information. I would be likely to consider continuing Tamoxifen another 5 years (or an AI?) but will probably not go for Zometa infusions. With a family history of osteoporosis I feel that the risks are too great for me to develop brittle bones. Funny - weighing that out with a possible recurrence, it's never easy is it?
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Joy.... Have you had a baseline bone density test? I am petite. I think I would have been recommended for Zometa infusions even if I hadn't been diagnosed with breast cancer. I have also had stress fractures in the past. I am not convinced that the Zometa builds bones. But considering how compelling the evidence is at preventing BC recurrence, I roll up my sleeve every six months and take it. None of the choices seem palatable....
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I haven't had a bone density test. I'm also petite, no fractures yet. It would be interesting to see if they give Zometa infusions here in Hungary. Hmmm - I'll ask at my next onc appt. here. Without the BC diagnosis, I would not consider these types of drugs. Preventing recurrence is the only reason that I would consider it, and then it would still be a very hard sell for me.
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Regarding my bones, I walk everyday.... Mind you not as much or as far as Harold Fry... But like him... I am on a mission!
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Voraciousreader-
I read somewhere that a big reason that Tamoxifen is given for only five years is a concern about developing a "hardier" cancer, more difficult to fight, if it is taken for over five years (in addition to uterine cancer). I noticed the study didn't mention anything about that. Have you read studies about that, you being "voraciousreader" and all...?
Since I just started Tamoxifen this year, I have time to decide if it will be right for me in five more years, but I'm curious and would think others are too.
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Stay... I think the evidence promoting the use of Tamoxifen is robust. That said, are there outliers that get recurrences that are difficult to treat attributable to Tamoxifen? I haven't come across that research. I think with today's announcement, more women will be encouraged to take it for a longer period of time. Until today, I was told by my MO that I would likely be a candidate for Tamoxifen for 5 years, followed by an AI for an additional 5 years because I became menopausal. Now I think I will take Tamoxifen for the full 10 years despite the risks. Afterwards, hopefully there will be additional research about endocrine therapy which will guide me towards my next step. I have always been gun shy about taking an AI because I know it is hard on the bones. My guess is that eventually there will be evidence supporting lifetime use of endocrine therapy for those who can tolerate it.
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Stay... The biggest problems caused by tamoxifen are blood clots and uterine cancer. But according to the data, the benefits outweigh the risks.
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"...And some women simply can’t tolerate tamoxifen and are eager to get off of the drug as quickly as possible. They might have hot flashes, moodiness, and vaginal dryness making sex very painful. “About 10 to 15 percent of women don’t like being on it,” Winer added, “and unfortunately, younger women seem to have more of these side effects.”
Those with small, non-aggressive tumors with no spread to nearby lymph nodes might consider only taking tamoxifen for five years if they’re plagued by side effects since their risk of recurrence is very small. Those with larger, more aggressive tumors, however, might feel more compelled to stay on the drug for a decade.
For women whose breast cancer was diagnosed after menopause, the picture gets even more complicated. They’re usually given newer drugs called aromatase inhibitors (Arimidex, Femara, Aromasin) in addition to or instead of tamoxifen for a total of five years of treatment. Dana Farber patients typically get two years of tamoxifen followed by five years of aromatase inhibitors.
“I’ve long believed that these extra years of treatment would help,” said Winer. That’s because with estrogen-receptor positive cancers, half of all recurrences happen beyond five years of diagnosis.
The new study found that 21 percent of those taking tamoxifen for 10 years had a recurrence during the study compared to 25 percent taking tamoxifen for the shorter time period. The biggest differences in recurrence rates were seen between 10 and 15 years after the cancer diagnosis.
“That was confusing to some of the oncologists at the meeting,” Winer said, but it could have to do with tamoxifen’s cancer-preventing benefits lasting for up to five years after women stop taking the drug.
Post-menopausal breast cancer patients could be given the option to take estrogen-blocking drugs for longer, but oncologists might be left in a quandary about which drugs to give and for how long. “Should these patients be given 10 years of treatment with an aromatase inhibitor? Should they have 5 years of an aromatase inhibitor followed by 5 years of tamoxifen? Would more than 10 years of tamoxifen be even better than 10 years? No data exist to support any of these options,” wrote Dr. Trevor Powles, an oncologist at the Cancer Centre London in England, in an editorial that accompanied the study..."
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More information below on exercising with osteoporosis. As a pilates trainer, I'm pretty passionate about this.
For anyone with osteoporosis wanting to start a strength training program, I would encourage you to find a qualified professional to give guidance. It's also important that BC patients take precautions to not aggravate or bring on lymphedema, by working very slowly and methodically with upper body exercises.
"Exercising with osteoporosis: Stay active the safe way
Choosing the right form of exercise
These types of activities are often recommended for people with osteoporosis:
- Strength training exercises, especially those for the back
- Weight-bearing aerobic activities
- Flexibility exercises
- Stability and balance exercises
Because of the varying degrees of osteoporosis and the risk of fracture, certain exercises may be discouraged. Ask your doctor or physical therapist whether you're at risk of osteoporosis-related problems, and find out what exercises are appropriate for you.
Strength training
Strength training includes the use of free weights, weight machines, resistance bands or water exercises to strengthen the muscles and bones in your arms and upper spine. Strength training can also work directly on your bones to slow mineral loss.Osteoporosis can cause compression fractures in your spinal column. These fractures often lead to a stooped posture, increasing the pressure along the front of your spinal column, and result in even more compression fractures. Exercises that gently stretch your upper back, strengthen the muscles between your shoulder blades and improve your posture can all help to reduce harmful stress on your bones and maintain bone density.
Weight-bearing aerobic activities
Weight-bearing aerobic activities involve doing aerobic exercise on your feet, with your bones supporting your weight. Examples include walking, dancing, low-impact aerobics, elliptical training machines, stair climbing and gardening. These types of exercise work directly on the bones in your legs, hips and lower spine to slow mineral loss. They can also provide cardiovascular benefits, which boost heart and circulatory system health.Swimming and water aerobics have many benefits, but they don't have the impact your bones need to slow mineral loss. However, these activities can be useful in cases of extreme osteoporosis, during rehabilitation following a fracture or for increasing aerobic capacity.
Flexibility exercises
Being able to move your joints through their full range of motion helps you maintain good balance and prevent muscle injury. Increased flexibility can also help improve your posture. When your joints are stiff, your abdominal and chest muscles become tight, pulling you forward and giving you a stooped posture.Stretches are best performed after your muscles are warmed up — at the end of your exercise session, for example. They should be done gently and slowly, without bouncing. Avoid stretches that flex your spine or cause you to bend at the waist. These positions may put excessive stress on the bones in your spine (vertebrae), placing you at greater risk of a compression fracture. Ask your doctor which stretching exercises would be best for you.
Stability and balance exercises
Fall prevention is important for people who have osteoporosis. Stability and balance exercises help your muscles work together in a way that helps keep you more stable and less likely to fall. Simple exercises such as standing on one leg or movement-based exercises such as tai chi can improve your stability and balance.Movements to avoid
If you have osteoporosis, don't do the following types of exercises:
- High-impact exercises, such as jumping, running or jogging.These activities increase compression in your spine and lower extremities and can lead to fractures in weakened bones. Avoid jerky, rapid movements in general. Choose exercises with slow, controlled movements.
- Exercises in which you bend forward and twist your waist, such as touching your toes or doing sit-ups. These movements put pressure on the bones in your spine, increasing your risk of compression fractures. Other activities that may require you to bend or twist forcefully at the waist are golf, tennis, bowling and some yoga poses.
If you're not sure how healthy your bones are, talk to your doctor. Don't let fear of fractures keep you from having fun and being active."
www.mayoclinic.com/health/osteoporosis/HQ00643/NSECTIONGROUP=2 (not sure how to make this live, sorry)~edited to add additional lymphedema precaution0 -
I am hoping the SE's remain low and I can stay on it for 10 years. My tumor was there for a while. Athough, my nodes were negative, I am nervous about a few of those nasty cells maybe have escaped.
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http://www.sabcs.org/PressReleases/Documents/2012/ac59aa4e03d9ae94.pdf
The above link is the latest press release from the San Antonio Symposium that I think is important...
Young Women With Breast Cancer Were More Likely Than Older Women to Respond to Neoadjuvant Chemotherapy
Finding was confined to those with triple-negative and luminal-type breast cancer.
Better outcomes seen for young women with luminal A-like tumors who achieved a pathological complete response compared with those who did not.
Neoadjuvant chemotherapy needed for young women, even those with HR-positive, HER2-negative disease.
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Belinda I agree with you about staying on Tami for longer than 5 years. It seems like a big chance to be off of all treatment after 5 years, having not had radiation or chemo. My question will be whether to continue Tamoxifen after 5 years or switch to an AI, as I will be menopausal.
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VR thanks so much for keeping us updated with all the latest research news. The new tamoxifen data is v interesting. If I have the option I would prefer to take 10 years of tamoxifen rather than 5 years tamox and 5 years AI as I don't seem to get side effects from it. But certainly even for us early stagers it looks like 10 years treatment is safer than stopping at 5.
Stay ...it's endometrial cancer that is associated with tamox and of course the hot flashes and blood clots. The cancer risk is why treatment with tamox was reduced to 5 years in the early years of its use. But the endometrial cancers occurred more commonly with doses of 40mg + which were used at first. From the recent data it looks like 10 years at 20mg is safer.0 -
Thanks VR and Annicemd and others who piped in about Tamoxifen. I am hopeful that in another five years when I have to decide whether or not to continue the evidence of benefit is overwhelmingly positive!
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Annicemd - that's great to know about the endometrial cancer being linked more with 40mg! I just started tamoxifen in May so I agree that when my 5 years are up, they'll have even more research done proving that 10 years is better than 5. And if we do end up taking tamoxifen for 10 years, would we then take Al's after that? I'm all for being able to take whatever I can for as long as I can!
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Yep risks are greater with higher doses tamox but there is a recognised small risk to the endometrium with tamox so checking that with scans is still important. It's seems logical to me to take it longer for a disease that has a recognised late recurrence risk. I am sure the safety data will gradually become clearer about whether taking 20mg for ten years increases the risk to the endometrium significantly or not and how aromatise inhibitors will best fit into the equation for ER positive disease
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Thanks for the info about dosage and endometrial CA. I'll have to make a note to ask my GYN about that. This morning was fun (not really), had an abdominal sonogram and a transvaginal sonogram to establish baseline after 3 months of Tamoxifen. The tech was really good though... Now to wait a few days for results.
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