Stage 1, grade 1 and pre-menopausal
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Hi Voraciousreader and Sherric,
My Dx didn't update on the earlier post before I figured out how to update it. But I am: IDC grade 1, .5mm stage 1 and a second spot of DCIS 1.8 cm grade 2 stage 0. My question was directed toward the estrogen effect on future reaccurance and how that would effect my treatment. Since my post I found out from my path report (I had a BMX with nodes removed) and found I am ER/PR + HER2- 0/3 node neg. Then I also found out about the oncotype test (in progress). So, after all this mumbo jumbo, I just wanted to tell you thank you for your responses and sorry I made them so confusing. I am finally getting the hang of this I think with the reports and when to ask questions. Hope everyone is doing well...thanks...best to all.
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Hello my Stage 1 sisters. . .
I've been lurking on this thread - highly enjoying the conversation - kind of waiting to jump in until I knew more about my details as of late . . . . and I think I'm there and need your insight. . . .
I finally have an Oncotype score - the magic number is 14. Although I am in the low range, I'm certainly not as far INTO the low range as I'd like to be.
This gives me, I read an average rate of distant recurrence of 9% . . . .
My quantitative single gene report is ER: 9.1 ---- PR: 9.3 ---- and HER2: 8.2/negative . . . . no big surprises there per final pathology report. My cancer was a 6mm piece of IDC in a "healthy" breast with a 2mm micromet in one sentinel node . . .only node taken ironically.
Not sure what else I should be looking at or gaining from this report. Any insight?
I'm open to thoughts, feedback, wisdom from those who have tread before me. Seriously considering a proph hysto for genetic reasons (cancer prevention) vis a vis bc treatment. Seriously considering local radiation --- although rad onc initially talked about doing breast area (remember - breast is gone though), chest wall and axilla . . . MO thinks that is a bit overkill for a 2mm micromet.
If you're perusing tonight - would love some feedback on this - surely appreciate it! I feel like I am missing something from this report . . .and oh - I'm 44 and premenopausal (but obviously either by chemicals or surgery, Menopause is comin' baby!)
thanks much - kelleyod
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kelleyod Just to share with you my experience, as a Stage 1er. I also had an oncotype of 14 (and another of 11, 2nd mass). My treatment plan did not include chemo or rads, but Tamoxifen and a recommendation to suppress ovaries. My MO said that the combo of Tamox and ovarian suppression equaled chemotherapy, for my stage and grade.
Has chemo been recommended to you because of the micromet? Why are you thinking of a hysterectomy? I wondered if ovaries were at a higher risk of cancer due to BC, and MO said that ovaries are not at a increased risk of cancer with a BC diagnosis, unless BRCA+.
Seems like a pretty small mass of IDC at 6mm - there are some wise women here that I'm sure will chime in soon.
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Joyh1109 and Kellyod - I have an onctype of 14 as well. Three doctors said no chemo. I started Tamox 8 days ago. I see my MO tonight and I will be asking about ovarian suppression and Zoladex (which I learned about from this thread). I will be tested for BRCA in the next two weeks.
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Hi kelleyod, if ER positive, blocking estrogen with chemicals or surgery will be very adequate treatment. You have v small primary. I am sure your onc will not recommend chemo. Not sure about radiotherapy, which may be a good precaution with micormet...you need a good onc who can help you with tricky decisions!
Good luck0 -
Thanks you guys! Really appreciate the insight . . .
Looking at hyterectomy due to increased risk of uterine cancer with a funky little PTEN gene mutation . . . not really because of the BC but with some medications just looks like it's getting in the way and my Gene Team is recommending not to add fuel to my cancer fire. . . .
Funny you should mention Zoladex --- that is one option one of the MOs is talking prior to hysterectomy. (If I'm not mistaken that is Goeserlin shot - yes? if so - that's the one. . . ). annice - how did Zoladex (does Zoladex) work for you? SEs bad? Do tell . . . .
Let's talk radiation: theoretically would y'all think very targetted (i.e. axilla) or whole schabang of the area? Does it strike any of y'all as too much? That darn one micromet is throwing everyone off. I'm inclined to agree with you, annice - it's a precautionary step. The plan is for lymph node ultrasound every 6 months for 2 years. . . Still think its necessary? I'm NOT looking for you to give me answer I want - just a good answer.
Thanks to ALL of you. . . .this forum is becoming my place to be. You've reached out and I can't express my gratitude enough . . . .
Gracias.
kelleyod
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kelleyod I will be interested in knowing more about Zoladex too. The option for me is the Zoladex, or an oopherectomy. And I'm really anxious about shots. Can't offer anything on rads as I didn't have them. Sorry about the PTEN gene.
And where is Howey in the Hills? I lived in south Florida for many years and have never heard of it!
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I was given the zoladex shots monthly post chemo and when starting arimidex and told the zoladex would ensure the menopause continued so that the arimidex would be the most effective. The shots themselves didnt hurt and I never bothered with getting the local anaesthetics for them. What it did though was really intensify the side effects of the arimidex. The shots lasted about a year but I constantly complained of the side effects to my BS and my onc till finally they agreed that I could discontinue the zoladex as my blood tests showed I was definately post menopausal. If I hadnt kept on at them Im sure I would have been on the zoladex for a fair bit longer.
Quality of life improved dramatically once the zoladex was discontinued. I would take them again if I had to, and if your advised to have the zoladex, Id recommend it, but just keep a close eye on the blood test results and once your onc is satisfied that menopause is complete and IF you are suffering the intensified side effects of the arimidex/tamoxafin like I did, then have them discontinue it once its done its job.
Ladies it is a very big needle, but truly it doesnt hurt. You just dont look and try not to jump when you hear a snap which means the capsule (or whatever) is being sent down into your belly. I reckon local anaesthetics hurt a lot more than the Zoladex does so dont worry about the needle.
Hope this all helps some of you in making your decisions.
By the way I was also recommended to have an oopherectomy and had the specialist appointment to discuss it. I asked whether it would make any difference in discouraging the BC and was told no it wouldnt so after discussions with onc, BS and the specialist decided I had had more than enough surgeries and declined their offer. We left it at, if at some time in the future my tests results indicated the need for the oopherectomy, we could look at the issue again at that time.
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I am just joining this thread. I am 52, pre-menopausal, ER+/PR+, lumpectomy Dec 2011, tubular carcinoma and DCIS, stage/grade 1, negative nodes, just finished rads, no chemo. I can not take tamoxifen due to strong family history of blood clots and strokes (would not even if I could) and will not have shots to stop my periods. This leaves only the choice of having my ovaries removed. I am so close to menopause that I can't decide whether to wait a year and see or go for the surgery now. My onco score was 13 with 8% chance of recurrence but that % is with the 5 years of tamoxifen. The onco score % of recurrence is usually based on a period 10 years. I would be in menopause within a couple years or sooner. The risks involved with this type of surgery are also pressing on me since my obgyn would prefer to do hysterectomy since I have a fibroid uterus. My family feels that this seems too drastic of a measure. Of course it is my decision but I am unsure if any cells have gone what I call "walkabout" and just waiting to start the cancer somewhere else in my body. I can't decide.........
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In January, I completed 2 years of Lupron injections. I started my journey at age 53, premenopausal. Lindal, I'm not sure exactly how the doctors can test whether or not you are post menopausal while you are currently doing chemical ovarian surpression. Could you explain further? My doctors told me that the only way to find out if I was definitely post-menopausal, was AFTER I stopped taking the injections for a few months and then they could do blood tests to determine my status. So, since my last injection was in January, my first blood test was in late February, which showed very low estrogen levels. And now I'm scheduled to check again in early April and I'm keeping my fingers crossed that my estrogen levels continue to stay down. If they begin to see a rise in the estrogen levels, I will resume the injections.
Kingjr....The only thing frightening about the injections is that the poor nurse would have to look at my bum every month. I felt so sorry for her because sisters would be streaming in before and after me for the injections. Felt more sorry for her looking at all of our arses than I did for myself!
Initially, I was offered an ooph, but I declined. I felt I was close enough to menopause that I thought two years of lupron was more gentle on my body. I also felt that I would TRY the lupron first and if I could tolerate it...it would be so much better than doing surgery which was irreversable. If the side effects from the lupron was THAT uncomfortable, then I would have stopped the injections.
Regarding the fibroids...I had fibroids and the lupron srank them. So that was a GOOD side effect of taking the lupron.
Good luck with your decision.
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voraciousreader - thanks for your post. I am a person who strongly opposes messing with the body's own chemicle balance. I'm not saying that I don't take medications because I do have to. Years ago I worked for a drug research department at a Veterens hospital. I know alot about drugs in general and the chemicle changes that they can do to you. So to me altering ones natural cycle by altering the brains natural chemistry would not appeal to me but I think I would like to do more research on this treatment since like you said, close to menapause, perhaps 2 years could be my answer. Also please tell me, are the injections costly? I do have insurance but do you pay any co-pays for each injection?
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Kingjr66, I too couldnt take tamoxafin as I actually had blood clots during chemo thanks to a bad experience with a Picc prior to getting a port, which is why I was put on the arimidex. Those nightly injections of claxane where the bane of my life back then lol.
Voraciousreader, I'm very foggy brained (hopefully a side effect of arimedix that will dissappear when I end my 5 years) and cant remember definately as to how it all happened, I think it was cause I hadnt had a period since the first round of chemo, or any spotting, combined with the commonsense approach from my BS and Onc, and more than likely the fact they were tired of my nagging lol.
I do know it was thanks to my BS's recommendation which i know is unusual, but the man has been a dedicated Breast Surgeon for at least 30 years and has seen it all. It was his opinion that I had been on zoladex long enough and to ask the oncologist to take me of it. The onc and he work together regularly with many patients in common so I guess the oncs respect for the BS meant I could have my way. I cant remember now if Im right in saying I had blood tests showing low estrogen or what as back then with so many tests of every description its all a blur. I could have been confused in my initial post and that it was the results of the tests after coming off zoladex that I remember. Having read your post, being tested after coming off sounds more right to me as I do remember the worry of whether the estrogen levels would continue to show post menopausal.
Im sorry for confusing you and myself while I was at it (doh).
kingjr66 Im an aussie so cant help with the costings of treatments.
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kingjr....I come from the school of thought that I'd like to keep as many body parts as possible.... Furthermore....there's also evidence that the ovaries can be of some benefit. That's why the SOFT trial is so important. Unfortunately, we don't know the results of it as of yet. By removing the ovaries or through chemical surpression we might be reducing the risk of a recurrence...but we still don't know the answer to THAT question or the answer to the question of whether or not it affects overall survival. Again, it would be interesting to see the results and also see if different age catagories matter as well....
I didn't have a co-pay....Everyone's insurance varies....
Lindal....Thanks for your reply. I'll keep everyone posted after my next blood work.
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VR I'm interested too on how one can be tested for menopausal state, while on ovarian suppression meds. Does it make sense to test estrogen levels while on Tamoxifen? I am headed into menopause, and don't want to go the Zoladex route (or ooph) unless really necessary. My last period was Dec. last year - fingers crossed. Hope that the Lupron shots for you can be discontinued.
Lyndal1966 Thanks for the description of Zoladex shots - big needle - yikes. Not much pain, reassuring. I doubt that local anesthestics are given here.
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Joy...My point is that you can't check menopausal status while taking chemical O/S. You can be on Tamoxifen though (which I presently am taking). Before you begin O/S, you can check your estrogen levels with a blood test. I would have a very frank discussion with your MO about your estrogen levels and menopausal status. When we discussed O/S we looked at my estrogen levels and family history and my personal history. I was menstruating monthly, had high estrogen levels, had a high estrogen fueled tumor AND a family history of late menopause. We chose 2 years of O/S and then would check my menopausal status. Your situation may warrant only a few months of O/S or none at all....
Good luck!
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Thanks VR. Good point about getting estrogen level checked. What is the benefit of ovaries after menopause?0
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In premenopausal women, estrogen protects against heart disease. The question is, once you turn off the major producer of estrogen, the ovaries, will your heart disease risk increase? My internist is always concerned for my risk of heart disease because of my family history. Thankfully, aside from being now "post menopausal," I have presently no other risk factors for heart disease. After menopause, the ovaries still produce minute amounts of estrogen...and there are other parts of your body producing estrogen as well. Fat stores estrogen...so that's why they tell obese women to lose weight especially after a breast cancer diagnosis that is estrogen fueled.
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Kelleyod they give you zoladex to block estrogen before hysterectomy to make the surgery easier, that would just be short term in that context. Are they taking ovaries too? In terms of side effects, zoladex gives you the symptoms of natural menopause including aching and flushes which I have encountered. Its do-able! I have no major problem with taking chemicals! I can't face hysterectomy and ooph at mo, still undergoing reconstruction, exchange surgery next month so zoladex is simple way of blocking estrogen. I have the 3 monthly shot, as I work full time it saves me a few trips to MO. the 3 monthly is big needle in abdominal wall so I sneak a little emla (local anaesthetic cream) over the injection area to numb it so it's no big deal.
I don't think there is easy answer re radiotherapy to micro met but if I was going to have it I would go for whole area as there is scatter effect anyway so you may as well make it all therapeutic.
I think VR has answered most other questions posted. yes can't check for menopause status while on Lupron or zoladex.
Ovaries not much use after menopause0 -
Love this thread - thanks Annicemd and VR for posting. This information is so useful for my situation.
Talked with MO and he thinks that I still have plenty of estrogen (no need for blood test in his opinion), so Goserelin injections or an ooph would still be warranted in my case. I may give the injections a try - rethinking the ooph.
Why are the ovarian suppression drugs limited to about 2 years?
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Ladies, I need some advice. I'm really stressed out because the goal posts keep moving. I am 49, pre-menopausal, Was dx'd with LCIS & PLCIS in Oct 2010. In Jan 2012, I had PBM because of that. They found 2 spots ILC (4mm & 7mm). ER/PR+ (90%) & HER- Oncotype score 6 with distant recurrence rate 5%. Nodes clear, no LVI.
Was going to take tamox, but found out this week that I have a clotting disorder so I cannot. Will meet with onc in a few weeks to discuss alternatives. I said on the phone that I was sure he'd be discussing throwing me into early menopause & giving me AIs. He said we could also discuss blood thinners & tamox.
For my small recurrence rate, this is starting to get way too complicated with so many potential side effects, I;ve had heart palpitations for years, so I'm not happy with losing so much estrogen. I don't even think AIs would be right for me.Oh and because SNB wasn't done, I had ALND a week later. I am still suffering ROM loss & am still in PT.
I lost 50 pounds a few years ago only to get the questionable mammogram. So I am physically fit. Onc says that w/out tamox, my rate is about 9-10% (though it's roughly a guess). He said my exercising cuts the rate down about 30% so that's about 6-7%.?
So what do I do? What protocol do I accept? I decided blood thinners are out. I'm not screwing with my blood. I don;t want anything else to slow my body down. IMO being physically fit is probably the best chance I have. So I'm thinking Lupron tp ease me into menopause to stop so much estrogen production. I don't want it supressed too much because of my heart issues, so no AIs. Maybe zometa because that can help lower risk of recurrence a little and perhaps some metformin thrown in. I know it's not an ideal protocol, but it's something. I'm just not sure that taking AIs for such little benefit will work for me.
Any thoughts? Thank you so much!
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Crescent... I would ask your doctor to present your case to the tumor board. Likewise, you can also get a second opinion. I would also make sure to be under the care of a cardiologist if you aren't already.I think a couple of good minds can uncomplicated your situation. Good luck!
Joy... I don't think there is a limit for how long you can take o/s injections. I did two years based on my family history.0 -
Thank you VR, My appt isn't for 2 weeks, and this is obviously weighing heavlily on my mind since I was dx'd 1/19. It's time to do something. I want to be prepared for his suggestions, and I want to have my own suggestions too. It's getting so late that whatever he suggests, I'll probably need to start very very soon. I don't want to go to this appt and then have to wait even more weeks for blood tests, referrals ... etc. Does anyone have any suggestions of what I should be looking into now so I can be ready?
Thank you.
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Crescent: I'm in almost same situation. I am 52, premenopausal, can not and will not take tamoxifen for same reason as you will not do shots to stop my period. My onco score was 13 so I am in 8-10% recurance and my brca was negative and did not have chemo. I want to do whatever it takes to prevent this cancer coming back or anywhere else in my body especially my ovaries. Since I am ER+/PR+ my only recourse for a further prevention is to remove the ovaries, so be it. I just made my decision this weekend after thinking it over for a couple months. I know that I am so close to menopause but my obgyn believes I may go antoher year or 2. No way of knowing if my cancer cells went "walkabout" in me so I will have the surgery. I think the clincher for me was when my doctor told me that ovarian cancer is a killer and no way to detect it and when they do it is ususally too late. I know that may seem harsh words to tell someone but in my opnion it was the truth and I respect her for it.
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Crescent if you can't take tamoxifen then Lupron is a logical alternative. If you are happy with it and no ill effects, you could consider ooph later
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Thank you Annicemd. I was thinking lupron but no AIs. Does that sound OK?
Thank you also Kingjr66. Good luck with your surgery! Keep us posted.
I can't believe how upset I am over this. Maybe I'm just tired of the whole thing.
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Crescent, Lupron instead of tamoxifen (when latter is contraindicated) is a well recognised regimen for premenopausal BC and sounds a very reasonable approach in your case... you have good stats. AIs do have nasty side effects and consequences and I don't think the data for AI plus Lupron for premenopausal women are strong. It's always a challenge finding the balance between risk and benefit of treatment
Hugs
Annice0 -
Hi guys . . .
Looking for more insight as I try to find my balance between risk and benefit . . . You know my details a couple of posts back. . . .
I am currently thinking / debating on strategy on the drug front.... Options include :
1). Tamoxifen - until i do hysterectomy and eventually get on the AI train....
but let's not forget my funny little PTEN gene mutation which rises uterine cancer risk and can cause "vascular anomalies" . . . . . Is tamoxifen a smart route?
2). Zoladex - until I do a hysterectomy and then find that AI train. . . .
If I do this am I miss out on any cAncer stopping goodness of tamoxifen?
I have MOs with differing thoughts . . . And a DH who will not give an opinion..... Sure appreciate my bc sisters tonight.... Open to thoughts!
Thanks much - kelleyod0 -
Kelleyod - I myself have opted for the hysterectomy. I can not and will not take tamoxifen. Won't need any of those hormone drugs if you have a hysterectomy. Please do thorough research on any drug interventions. I know that most need these for their treatment plan, but woman with lower % of recurrence don't necessarily need to take them. There are risks and SE's. My onco gave me 3 choices, tamoxifen, shots to stop my periods or ovary removal. Believe it or not, and I did my homework on this very thoroughly, the hysterectomy was the best choice. I am not a drug taker. I worked for a drug research department once and I know too much about drugs and how their chemistry effects the normal chemistry of your body. Please, this is only my opinion and only you know what is best for you. If it helps, my BS and my GP both agree that the hysterectomy is the right choice for me since they know my medical history very well.
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Kelleyod - who did your PTEN testing? Did your MO ask for that? I am on Tamox - very pre-menopausal and my mom was just diagnosed with uterine cancer. I did ask my mom to ask her doctor for the PTEN gene mutation test so we'll see. This is crazy. We really have no family history of cancer and we were diagnosed 4 months apart. Anyway, I am so curious what my MO will now do / say with her diagnosis. I'm on Tamox so I am thinking now hysterectomy / AI's? Any opinions?
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I am 42, premenopausal........I just finished rads....I have decided not to take Tamoxifen or anything else.......Cancer math says that I have 2.8% recurrence rate with Tamox........and 4.1% without.......PLUS.......I exercise everyday and am fit...(so makes it even LOWER thatn 4.1!)......I just don't wanna mess with my balance......I am feeling great.......the side effects are not worth the 1.3% to me..........
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