DCIS questions and confusions, personal stories and issues
Comments
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Myna,
Excellent information....thanks so much. I thought they didn't start Tam until after Rads?Claire,
Got copy of my hormone path results.....ER positive (strong and greater than 90%). PR positive (strong,50%). Not sure what that really indicates in terms of the need for the Tamoxifen .I am post menopausal and do NOT want to take it unless its absolutely necessary. I do not need MORE flashes and sweats. I live in a year round humid climate so I am a dishrag most of the time.
How has the radiation affected you as far as zapping your energy?
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Thanks Myna - Super helpful AND v informative. I appreciate your contribution - and it was exactly how my Oncologist explained it to me. Almost 4 weeks in on Aromasin and doing great, NO side effects.
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Thanks Terrikoala and Shayne. I was hoping that the info would be useful.
Terrikoala, some doctors start tamoxifen with or before rads and some start it after rads. There is still a debate going on about the best timing. My MO, RO, and surgeon wanted me to go on tam right away because I had a history of atypia in the left breast and I needed a re-excision to get the DCIS out so I had to wait about 5-6 weeks after the second surgery to start rads.
Regarding tamoxifen, since you are postmenopausal, you would be put on an aromatase inhibitor unless you were not a candidate due to medical history, etc. Yes, it also has hot flashes and some side effects that are different from tam. But you may not have any problems taking it and you may not have serious hot flashes since you are postmenopausal anyway. You should talk to your MO about the pluses and minuses since it can prevent new cancers in both breasts and benefits are significant. I hear you re the weather issue; I am in NJ and we have had a run of hot and humid weather as well.
Regarding radiation and energy - I am 4 treatments away from the end (34 treatments) and for the last week or so I have been dragging a bit. Other than that, I feel very good. Some redness and bit of discomfort in the breast, but I take an Aleve twice a day and I am fine (OK with my RO). The worst part of the rads has been the time going back and forth to the hospital every day (almost an hour each way) and remembering to put the creams on at least 3X/day!
Hang in there everyone!
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Hello all,
I'm new to this forum and appreciate reading your histories, triumphs, and travails. Best of health to all of you.
Can someone help me figure out my Oncotype score? I just got it over the telephone with my Dr. and it's 53. My situ was also a grade three with necrosis. Does anyone know how that translates into the chance of future reccurance? I've been looking at many other sites where women relate their scores, but no one has had a score as high as mine (as far as I can tell.)
I've had my BCS and have had 16 doses of radiation, with four more scheduled to hit the surgery site scheduled. My oncologist has perscribed Aromasin (lots of strokes in my family) which I'll begin taking when I finish the radiaiton. I'm okay with that. It's that number 53 that strikes potential dread.
Thanks for your help---and as they say on the radio, "I'll take my answer off the air."
Patty
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Thanks Bessie,
Yes, it all makes sense. I just was wondering if others were told the same thing. I appreciate your reply. I guess that was one silver lining of having the double afterall. The side effects were very hard for me for the short period I was on the meds, but it seemed to be beneficial.
Thanks again.
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Hi everyone. this is my first time to this forum, I haven,t talked much about my dxand debated wether to ask any questions but i have been reading here for awhile and found it a big help. I start rads on monday after a delay till i healed. ( i will be getting full breast rads) My questions and ( there are a couple, hahaha) is how does the Ro determine percentages, I was told if I didn,t do rads i would have over a 65 percent chance of reacurance. ( this boob has been giving me the gears for about 10 years) until may the lumps have been shooting blanks. My last lump and recission at chest wall. And second of all do they do blood tests during radiation treatments??Oh and 1 more ( then I will shut up) does everyone have to have hormonal/drug therepy after?? Thanx for the ear not exactly a women of the world hahaha. Any input would be appreciated
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I am DCIS and have been on Al since the beginning, onco said I could pick which one as she thought all were basically the same
I started with femara, after 18 months I was having major leg pain which I of course, blamed on the femara so onco switched me to aromasin.
leg pain the same.....only after crying in my PCD office did that doc look at me and say ...dUH, how long have you been on simistatin? (cholesteral med that I started the same time as the AL.
well guess what, stopped the statin and pain went away over nights
so at my medical center the policy is to perscribe ALs to menopausal woman including for DCIS
so go figure, it is all an opinion but I am startled to see so many menopausal woman on tamoxifin
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sorry I must have deleted part of my posting, reasoning at my med center is that the side effects of tamoxifin is much worse than for the ALs, side effectsof tamoxifin include uterine cancer
one of my gym pals is now dealing with that as she was given tamoxifin for her DCIS
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What is your history? What Stage? What grade? Hormone status? Is it a lump, ir so, what size. Is it located on the chest wall? Which side, right or left?
I don't know how they calculate recurrence. Not everyone gets hormone treatment, but if your doctors suggest it, you are probably ER/PR positive.
Do you have your biopsy/lumpectomy pathology reports? If you don't, get them.
You might also try cancermath.org.
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regarding the odds, really think that should be on your list on your next visit to the RO or BS or whoever gave you the numbers
call em back and ask. not sure if all calculate the same
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Hi infobabe and proudtospin- believe it or not until i came to this forum, i didn,t know you could ask for a path report. Heck i didn,t even know these forums existed! So everyone on here you can,t believe the number of people you reach and help! This past one was a nonpalpable mass by chest wall right breast, I have had 3 prior lumps near same spot with palpable mass and i excission at the very start just underside of nipple.I am not sure of size,all i know is that we did more tests involved this time also had very difficult time with u.s. the mammo picked it up but believe it or not i apparently have blanks starting in lft breast which mammo did not pick up. It is grade 3 (rt breast) thank goodness there is only 2 boobs hahaha, The Ro mentioned drugs and of course the rads I was debating against it but will do rads for sure. So do they do blood tests during rads or does that depend on individual also? I was offered a mastectomy just befor i went in for my recission after not getting clear margins.
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roberta, now that you have had time to think and get some questions, call the docs and tell them you need to talk!
either a nother appt or by phone (mine did it by phone)
take a book with your questions, many folks like to take someone with them as it is real hard to remember any words after the C word
I did not take anyone being very independent and single but in retrospect, good to do
very best of luck, buy your self a little notebook and start a list of questions
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Thanx, I know I should have but I just kinda keep that stuff to myself as I don,t want to worry fam. anymore than i have to. Now that i am at the rads part it will be easier for me to be more open . They are very supportive ( my husband and son) but you know.... Least i will have more wisdom when lefty needs to be dealt with hahaha thanx
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I hesitate telling anyone what to do. I can only tell you what I have done and if it worked for me, and what I would do in your situation.
I took my husband to every appointment, of course I needed that 2nd pair of ears so I didn't miss anything, but also so he could understand what I was going through and why I finally made the decisions I did. For me, it worked. I had a lot of understanding from him and when I made decisions not at the recommendation of my doctors, he understood why. But you know your husband. Some would not be good candidates for this.
A question for your radiologist: If the lump is close to the chest wall, how can they radiate it without hitting your lung? I hate to suggest mastectomy because it is such a life change but you may have to consider it. Many women have done it and are happy with the decision. Most go for reconstruction at the time of surgery but that is the one decision you can make at a later date. Again, you need those path reports to understand what exactly you are dealing with. Call your doctors office tomorrow and ask for them.
What do you mean by "the lumps were shooting blanks?"
We are here to help you and listen to you so feel free to check in at any time. Without this web site, a lot of us would be up the creek, including me.
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ro-berta, if I understand correctly, you've had surgery, and re-excision surgery. After the re-excision surgery you had clear margins and now you are moving on to rads. You've already made the lumpectomy and re-excision decision and decided against having a mastecotmy, and you know that you plan to do rads...so you're not asking about any of that. What you want to know is how the Radiation Oncologist estimates what your recurrence risk will be. In other words, why does he think your recurrence risk is 65%?
Lots of factors go into that calculation. The size of the tumor. Whether there is a single well contained tumor or multiple and/or tumors that are spread out. The grade of the tumor. The hormone status of the tumor. The size of the margins. Even your age plays into it since studies have shown that breast cancer tends to be more aggressive in younger women.
By looking at all those factors, all of them specifically related to your diagnosis, and by looking at studies or programs that include the results of thousands of women who came before you, the radiologist is able to estimate your recurrence risk. So that's how the radiologist came up with the 65% risk.
As for hormone therapy, usually it is recommended to anyone who is ER+ who's had a lumpectomy for DCIS or who has invasive cancer. To determine if you want to take hormone therapy, you need to talk to your oncologist about your recurrence risk. Generally Tamoxifen reduces recurrences in the breast by about 45%. So if your recurrence risk is high, then you'll get a big benefit from Tamoxifen, but if your recurrence risk is low, your benefit will also be lower.
Just doing an estimate here, but if your recurrence risk after surgery alone is 65%, then generally radiation is able to reduce the risk by about 50% - so it could take your risk down to 32.5%. Tamoxifen generally is able to reduce the risk by a further 45%, so that would bring your recurrence risk down to 17.9%. However, if you cancer is strongly ER+, the benefit from Tamoxifen might be greater than that, reducing your risk even further. Those are just my estimates; I'd suggest that you talk to your oncologist about this to get better information as it relates to your specific situation. And if you have invasive cancer (do you have DCIS or IDC?) then there is an very important addition benefit from Tamoxifen (and the AIs) in that they also reduce the risk of distant recurrence, i.e. mets.
As for whether your lumps might have been shooting blanks, by this do you mean that maybe your cancer wasn't doing anything and was just sitting there? The way I look at it, that would be the flip side to your recurrence risk. If you have a 65% recurrence risk, it means that there's a 35% chance that the surgery took care of everything and nothing else is necessary. Does that make sense?
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impattyb - if your score is indeed 53, that's quite high and they will likely recommend chemo to you. You should receive a printout from genomic health with all of the oncotype info on it, well, as much as they release. They don't give % ER or % PR, just a number, but definitely get your hands on that report, and also have a talk with your MO. Best of luck to you.
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Big, Big thanx everyone I will ask more questions and now I know more on what to ask, I kinda shut down with the one R.O intern as he stated "it is only dcis" jerk. I also know that it was multi. so it was partly my fault for keeping my mouth shut and wanting him to get the h*ll out of there. The reg RO came in later by then I was not in the most open frame of mind. The info I have received here has been invaluable and I greatly appreciate it and Beesie thanx also it made a lot of sense!
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Thanks Myna, good stuff you shared and I really appreciate your personal insights
I am still learning the lingo so who is an MO and RO? I hope I thump myself in the forehead when you tell me.
I have had bad hot flashes and terrible sweats day and night for years so hope any therapy does not make it too much worse or I will only be able to dress in terrycloth...which I was named for by the way. True story...wrapped in it at birth and original spelling of my name is with a 'y'. Guess its good I was not wrapped in swaddling cloth.
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Terry, MO= Medical Oncologist
RO=Radiation Oncologist
Dont feel bad, I still don't know half of them. -
terrikoala... MO=medical oncologist, RO=radiation oncologist
This link will lead you a list of abbreviations:
http://community.breastcancer.org/forum/131/topic/773727?page=1#idx_1
I am sorry I haven't been around...very busy right now and headed off to a week without computer...on vacation. I am so glad to see that this thread is working out...:)
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proudtospin...
WOW I sure am glad I read your commend. I have been on simvistatin for ears and will be shouting that when the hormone therapy time comes BUT they are supposed to PAY ATTENTION to the list of meds we have to give to everyone we encounter. Just goes to show how much attention they pay.
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Terri, the side effects had nothing to do with the aromasin, all to do with the simistatin.
if you goggle simistatin you will see lots of info on its side effects. I now take lipitor with no side effects. The learning part of this for me is not to blame all things on the Als! or on our cancer. If you have taked simistatin for years and had no side effects, that is fine and please do not think the AL will change that
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Proudtospin...oh ok...thanks for telling me that. I was on Lipotor and got enough samples that I rarely had to spend any money. Then because of family history of body producing cholesteral they put me on Vytorin and it was wonderful but became cost prohibitive so put me on Simvistatin. One more concern off my plate so thanks again
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Claire..thanks for the link to the acronyms. ENJOY ENJOY ENJOY your vacation.
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Teri...lipitor just went off patent and is now available as a generic but....big but! They have a $4 copay deal, you can download the cad from the Pfizer web site. my card says it is good till the end of 2014
me, loving the $4 copay as my copay would be much higher, you might look into it if money is important, me I am just happy I am not having the side effects of the other nasty one
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I haven't read the whole of this thread so apologies if I am asking a question that has been answered previously - if that's the case just tell me not to be so lazy and read the whole post
I am in the UK and I know treatment differs. I am being treated under our NHS system which, although can get a bit of a knocking sometimes, when it comes to things like this I have found them to be second to none, so I have no complaints about lack of care etc.
However for DCIS they do not do the er/pr testing and I have been told I will not need anti hormonals. I am seeing an RO on Monday to be told I probably will not need rads either. I am intermediate grade of 9mm.
My question is - when we are talking about a potential recurrance, would the rads just reduce the risk of getting it back in that area that was radiated?
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Yes, that is true. Your other breast is untreated so nothing has changed for that breast. My second opinion Pathologist says there is amost no benefit to Tomoxifen but there are risks of side effects and it gets worse for older women.
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Janet, yes, as Infobabe said, the benefit of radiation is just to the breast or immediate area that is radiated. Generally radiation has been shown to reduce local (i.e. in the breast area) recurrence by about 50%. But what that actually means for each individual is different since it depends on what your recurrence risk is with surgery alone. If you have a low recurrence, let's say 4%, radiation can cut that to 2% - there's the 50% reduction. Most women can probably accept and live comfortably with a 4% recurrence risk and given the risks from radiation itself, wouldn't choose to have radiation for only a 2% benefit. But if your recurrence risk after surgery alone is 20%, the fact that radiation can cut this to 10% is quite significant, and most women would probably opt for radiation in that situation.
The exact same equation comes into play with Tamoxifen. If you have a low recurrence risk without Tamoxifen, the benefit from Tamoxifen (approx. a 45% reduction in invasive recurrence risk) will also be low. But if your recurrence risk is higher, the benefit from Tamoxifen will be higher as well. Below I've included a link to a website that has information about the Tamoxifen clinical trials. The results of NSABP B-24, the Tamoxifen trial done on women with DCIS, is about 1/2 way down the "Clinical Pharmacology" page. This shows that women who took Tamoxifen had a 44% lower risk of a having an invasive recurrence. That is very significant, but again the absolute benefit is what really counts so you need to know your recurrence risk without Tamox. to understand what your 44% risk reduction would work out to be. Overall recurrence risk (both invasive and DCIS) was 35% lower for those who took Tamoxifen. Another benefit from Tamoxifen was that the risk of a contralateral BC (i.e. a new unrelated BC in the opposite breast) was reduced by 48%. Tamoxifen does come with the risk of some serious side effects, however as you can see from this clinical trial, the risk is quite low (generally in the range of 1% to 3%, depending on other conditions the patient has, and the age of the patient). The bigger issue for Tamoxifen is actually the quality of life side effects, which I've read can affect up to 60% of those who take the drug. Some are greatly affected (to the point of stopping the drug) but others are only minorly affected and/or adjust to the side effects over time.
So whether Tamoxifen makes sense for you depends on your ER status (I would suggest you ask to have the ER testing done, if that's in any way possible) and your risk levels both for a local recurrence and for the development of a new BC, in either breast.
http://www.rxlist.com/nolvadex-drug/clinical-pharmacology.htm
Infobabe, my guess is that in saying that Tamox. provides "almost no benefit", your second pathologist was referring specifically to your situation and to the fact that your recurrence risk is already so low with just surgery alone.
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Bessie ~
Thanks so much for that info. I hate reading studies and u explained it great !!!! Now I get it!!!!
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Thank you very much Beesie and Infobabe. This makes my understanding alot clearer now xx
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