Class of 2009 - Sisters in the same time frame
Comments
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I have been quite anxious since reading the NYT article today. I am having a second lumpectomy next week and, if I'm 'lucky' and they margins are negative, then I will have radiation. If not, I will have mastectomy. Reading this article makes me wonder if mine is the kind of cancer that would not bother me if it had been left alone to begin with. It is DCIS with microinvasion/IDC. Stage 1
Am I in denial?? Does anyone else wonder if they need treatment?
Bonnie
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Thanks for the Welcome Carole ~~
Alicia
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Good AM Bonnie and all,
I think we are all confused. I certainly am. For me, my major treatment is done (lumpectomy + radiation) so any misgivings I have are hindsight. But for someone facing the already difficult decisions this has got to be terrible. I did see Charles Gibson on ABC interview a talking head doctor about the report. The doctor-expert would not really commit to what he would recommend about routine screening, said to discuss it with you own doctor. Gibson said it looked to him that the issue was not screening but rather how to treat what is found in the screening process... to treat or not to treat, in other words.
I think that's the real issue. How do you decide not to screen? So many times we hear about tumors found this year that were not seen last year. Should the woman have waited 2 years between mammograms, 5 years? I don't think the screening with mammograms is overkill. In many cases it is inadequate to see certain tumors. The problem is what happens next.
The objection to screening is that it has not reduced the death rate from BC so "they" are saying it is not working. "If screening were effective we would be catching BC earlier, treating it sooner, and therefore women would be living longer." Maybe the problem is not the screening, but rather the treatment post screening. Some cancers are indolent and don't need aggressive treatments; that's why our mothers and grandmothers often survived without chemotherapy, radiation, tamoxofen, AIs, etc. On the other hand, maybe some cancers are aggressive and all the treatment modern medicine can throw at them is not affecting the ultimate outcome.
So I don't understand the proposed position that since we don't know how to change the course of the disease significantly we will stop trying to diagnosis it as early. It has been very hard for me to wrap my mind around the medical concept that there is no use in screening for metastases prophylactically, just wait til the patient is symptomatic. I can't shake the "find it early - treat it early - fix it mentality. But apparently early DX of mets does not alter the course of the disease. Grim thought. Is this concept creeping in to the science of diagnosing BC?
BTW, did you look at the link I posted just before this discussion about reconstruction post mastectomy? I thought it had very positive things to say about surgery options. I did not go that route so can't offer any personal insight. It has got to be a very difficult decision made worse by this latest debate. I am so sorry you are having to go through this at all, but especially now. I hope you have a good doctor who can make you feel comfortable with your decisions.
Pam
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Since my cancer was dx on a mammo that was a followup from a mammo 6 months earlier, I can honestly say they should not change the routine for early diagnosis. Maybe the problem is that the digital mammos done today are better and they don't have enough data to really evaluate if diagnosis is better and will find more at earlier stages.
Why should be have to wait until it is has spread or started showing symptoms before we are treated? Is this men talking and they are generally not the ones that have to go through this? Has there been a study on the survival rate of young women who were in later stage, because they were to young for screening, vs older women (like me) who have regular screenings and mine cancer was caught early?
They can not place us all in the same bucket. What are they thinking?
Juannelle
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Good AM Juanelle,
Is today your first chemo? I remember you were waiting a few days after the port was put in. How are you doing? Please say you are not working as hard and as long hours!
Pam
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Pam, thank you for answering my question. I am on the backside of week 5, and I start my boosts next Monday, I have to have 11 of them. I can see a couple sores on my breast from where my bra rubs me wrong. I am extremely sore and swollen this week. But, this too shall pass, right?
I need to vent for a minute if ya'll don't mind listening (or reading as it were). I feel like, just because I am not going through chemo and losing my hair, that everyone thinks I am fine. Anyone on here who has not had chemo experienced this? My boss at work is even asking me to work on Saturdays. I understand, I have work to do, but I just want one person to understand how I am feeling. I am tired, more tired than I have ever been, sore, and irritated. I know I could have it so much worse. But, the general population has it in their head that if you get cancer and you don't go through chemo that it "isn't that bad". Well, I have news for them, it is!!
My father in law came over this weekend with my step mother in law who hasn't seen me since I was DX'x in August. His comment to her when I joined them was "See, she's fine, nothing wrong with her." I wanted to scream at him!
I am sorry I got off on such a tirad, but I am just tired and needed to vent and I know this is the place where I can do it and you all will understand me.
thank you
Hugs
Jen
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Pam,
My Chemo is Friday. I have been working lots of long hours, but for me that is over. They will get me when they get me. I will not work at all next week, I just want to see how long it takes me to recover from one treatment to another. They are OK with that. I just feel bad that the other lady that has been working with me, now has to take on all the responsibility of the program. But she understands and is very supportive of me. There isn't much else they can do.
My boss' wife also has breast cancer, so he knows first hand what I am going through. That helps a lot, because I am not constantly have to explain. He can answer most of my questions, he has been a really good resource.
If chemo becomes too much, then I will take leave and probably not go back until after my radiation. It is just a waiting game.
Juannelle
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Juanelle, I admire your strength and courage as you face this. I know how scared I was at the thought of chemo, and you seem to have so much grace! God bless you!
Welcome to Astrix1235 and JustMeAlicia, I know you will find strength and loads of support on here. Wishing you faith and happiness. We are all here for you
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PJ12345, thanks for posting those articles.
On the first, I will just offer an opinion for consideration. Knowing how the "journalism" business works these days, I'm a bit wary of freelance articles, especially ones heavy on anecdotal stuff. There is reference to a study done by the quoted plastic surgeon, who I'm sure is very qualified, but it would have been helpful to have it footnoted. To me, the article presents a pretty one-sided view. And isn't it misleading to say that her reconstructed breast looks and feels like the real thing?
On the second, it's a very interesting -- and controversial -- discussion. I do think women are misled a bit by the constant refrain: do your screening mammos, catch it early and have a good prognosis. The image effectiveness depends on the breast (my tumours were never seen) and the prognosis depends on the cancer. (Dr. Susan Love covers this issue in her Breast Book.) It's probably true that we may be over-treating (some blame MRIs for this) ... but at the same time, I agree with you, I can't imagine we'd want walk away from a proven diagnostic tool.
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Jen, glad you can vent. People who have not been through this can not imagine what it takes to get through from one day to another. Just being diagnosed is tiring. I haven't even started my treatment and I am tired. The doctors appointments, the tests, the waiting is so hard on us and I don't think you can understand until you have spent some time in our shoes.
I know that I did not have any idea and I know that in the future I will be much more sensitive to others that are going through any kind of treatment.
There is so much pressure at work and of course, there is never enough people to do all the work, so that is an issue. Fortunately my boss understands and I have been on a special project for over a year and haven't been doing my regular job anyway, but that puts pressure on everyone in my group. So we are all stressed.
My DH who has been with me every step of the way, will sometimes say the stupidest things. I just look at him and say "you have got to be kidding, you really didn't really say that?" He looks at me with a look of confusion and still doesn't get it. But I will explain it to him. Then he gets it. I have explained to everyone that this is a very difficult period for me and what you could say to me a month ago, you may not be able to say to me today. So don't be offended if you get a bad reaction from me.
I hope you have a good day and vent when needed.
Juannelle
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Thank you Juanelle, I appreciated your support on this. Yesterday I told my husband I wanted to go lay down, and he said "why can't you stay here and talk to me?" I stormed out of the room and made some comment about nobody understanding. Needless to say when he found me in the bedroom I was crying and upset, not mad at him, but just in general. He has been by my side every step of the way and I could not have made it through this without him. I am truly blessed to have such a great man at my side. But, yes sometimes he says the wrong things, that like you said would not have bothered me 3 months ago.
Thank you! I wish you all a wonderful day!
Jen
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Jen, I totally agree with you about the way some people think about "just" having radiation. I ran into that with my MIL. When I told her, all she said was, "It's nothing then." I was so hurt. Found out later from another person in the family that when she said that to them, they lit into her (something I couldn't do). They informed her, "Cancer's cancer, for pete's sake! You still have to deal with that fact all the time, no matter what the course of treatment." Since then, she's been a little more supportive, so guess that did the trick. Thank goodness, her son was not like that--or I don't think I would have come through this as well as I have. I do feel fortunate that I had to just do radiation followed by 5 years of AI, but I've still had my moments of anxiety.0
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Hi All,
It's kind of like when you are first told you have breast cancer and you are stunned and sick... then the doctor orders all those scans to see if you have mets... and if you are "lucky" they come back negative and you say, "Oh good, I ONLY have breast cancer!"
So you ONLY had biopsies, surgery, years' worth of radiation dosage from tests in a few days, worried about insurance and what was or was not covered, had to "get over" a life time of ingrained modesty, endured the suspense of waiting to see what new horrible experience you would have to tolerate, faced your own mortality with all the what-ifs that go through our minds, and allowed yourself to be irradiated to the point it burns your skin and threatens your heart and lungs and bones. That's all.
The only ones who can say "that's all" are our sisters who have had to go through more. And, you know, they would never diminish what any one of us experiences. I repeatedly say, the only ones who "get it" are the women who have been through it. Thank you all for being here!
LUAH,
You are so right about the maybe too optimistic tone of the article re: reconstructive surgery. I wish it were as positive as the writer made it out to be.
Pam
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Pam you are right on ...you go girl!
Juannelle
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Hi Ladies - thought I posted a few days ago, but managed to put my message on the wrong thread. Oops. My big news is I'm finished with chemo - had to stop one round early. The treatament hit the central nervous system kind of hard - we hope these SE's will reverse themselves. Waiting for more genetic test results - will know in two weeks if a bmx will be necessary. In the meantime, I'm happy to be resting, repairing, and growing hair.
If no bmx, then on to "just radiation." Ha. That one is a doozey, Nancy.
Do I ever agree with all of you about people who just dont get it. Let me throw this log on the fire - a man I've known for years looked at me when I lost my hair and looked away. Then he said, "cancer is an ugly disease." Even though I was puny I could have windmilled on that man. It took restraint!.
But these folks try very hard to help. I love them for it.
Thank goodness we have each other. Wouldn't want anyone but you in this lifeboat - you make it cozy. XO, Mary
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Well said Pam!
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Hi Nancy,
My Oncotype was 27 and I, too, did not do chemo. But SO many women "20" or higher are advised to get chemo. I think you and I are the less common exceptions. Did you feel comfortable skipping that step? My drs advised against it and the only contraindication I thought I had was age (62). Also I am 99% ER+ which boded well for Arimidex doing its job. But I still second guess their advice.
Mary,
YOU MADE IT! I am sorry for the chemo se's and hope radiation is easier on you. Won't you feel like a warrior when you get through this! Do you have to travel far for rads? The every day commitment is so difficult if it also involves a long drive. Yes, Cancer does bring out the ugliness in the people around us.
Pam
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pj12345, I second that emotion! Thanks for doing all the typing and getting my thoughts out as well in your post.
Plus, because some do get cured, Early Stage B/C women and their issues, doubts and fears seem to get minimalized. We get told we're "lucky" if our cancer is small or caught early. (I must have missed the memo that breast cancer was no longer a life-threatening disease.) Although they were some of the most sobering words I ever heard in my life, the nurse was almost cheerful when she gave me the Dx.0 -
Pam, you put it all so perfectly - thanks! Wish I'd be able to say that to a friend of mine who said on the phone the other day, "well, breast cancer's really not so bad these days..." Aaaaargh!
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You all are my breath of fresh air today! Pam, you put is so much better than I did in my rant. I am so glad (and not surprised at all) that I am not the only one who feels this way. But, you know what, putting up with other people's crappy attitudes and snide remarks is just one more notch on our belt in this fight as far as I'm concerned.
MAGOB-I agree with you, I would not want to share this experience with anyone but you wonderful women!
You are my inspiration, all of you!
Hugs Jen
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I too was told that I shouldn't have chemo (risks outweigh the benefits) and have been very uncomfortable about it (I am TN). It isn't that I WANT chemo, just that I want to be sure that I hit it with everything I can! I do have an appointment in November with another Med Onc, but now am worried about the time frame if he thinks that I should have had chemo!!!! I have a friend that was told that chemo had to be started within 6 months of surgery..... has anyone else been told this?
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hi fmakj,
There was a thread a couple weeks ago where a women had moved following initial rad rx and her new onc said she should have had chemo. So the time window issue was discussed. Tender is our Might posted on the subject and I think she suggested chemo after 6 months was questionable. I will try to look up the thread as I am afraid I might be quoting wrongly.
Pam
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I found it! The search function works great. There are several posts that might help. Here's the link:
http://community.breastcancer.org/forum/104/topic/741936?page=1#post_1547068
I don't know how to make it hyperlink. You'll have to copy and paste. If anyone can tell me how to hyperlink here, please let me know.
Pam
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Thanks Pam, I'll just copy and paste!
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When I got my dx, I decided almost immediately on BMX because I (and a lot of other people) mistakenly believed that eliminating breast tissue meant eliminating the risk of recurrence. Only afterwards did my bc dr's NP explain that there is still the risk of recurrence after MX. It's impossible to guarantee that every single breast tissue cell has been removed. Cancer can show up on the chest wall or under the arms. My screening will involve ultrasound exams every 6 mos. I'll also have one last mammogram to give a baseline picture of the underarms. And I thought I would NEVER have to visit that cancer center again except for bone density scans.
I don't accuse our medical caregivers of withholding info. deliberately but there's so much we learn on the journey between bc dx and concluding our tx. In my case, I would make the same surgery decision again.
I don't pay much attention to the health features on tv news shows. You have to read all of the details of a study to get the real story. News is all about sensation and ratings.
Instead of people in my life not showing enough concern, they often seem overly concerned. I'm constantly saying, "I'm doing very well." I don't like being treated like I'm terminal! Being a bc survivor is a little like being a leper out of the colony.
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I have my first chemo tomorrow and it is my ninth week from surgery. My Med Onc said she liked to start it before the 8th week, but one week should make no difference.
I can't imagine what difference a week or two would hurt. Especially in my case, where they got the tumor with clear margins and I have had a PET scan and there is no cancer anywhere else in my body. A cell is a cell, still the same after a couple of weeks, but maybe it would be two cells.
Juannelle
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Good Luck Juannelle tomorrow. I will be praying all goes smoothly for you. I am 3 weeks post op ~ I see the Oncologist on 11/4 to set up my start date and all that good stuff. I hope he orders the Pet scan ! I am worrying myself sick !!!!! I will be thinking of you tomorrow.
HUGS !
Alicia
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Alicia, thanks for the support. I know how the worry is, there is so much to worry about as your progress through all of this. Each test, doctors appointment and all don't ever get any better. Just when you think you are about to catch up, they throw that curve ball at you.
Juannelle
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Juannelle, did you have a high oncotype dx no? I'm looking at your dx and wondering why you're taking chemo. Small tumor and no node involvement, only Grade 2 and ER & PR plus. Similar to my dx except my tumor was larger at 1.2 cm, Grade 3, and 0/4 nodes. You probably explained in a much-earlier post and I don't remember.
Hope you tolerate the chemo well. Hugs!
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Hello ladies - I have been a real lurker lately and haven't posted much. I do have something on my mind and hope someone on this thread might be able to relate. I was on Tamox. and got a blood clot in my leg, complex cysts and fibroids from it. Onc. took me off immediately. I am 51 but premenopausal. Onc. said I can either wait til menopause comes to take arimidex or one of the other AIs, or have an ooph or get a shot once a month to stop periods and go into instant menopause. She said that it is not pleasant to do either of those. Then she said I had a "baby" cancer and I could just do nothing if I wanted. I am so paranoid by not taking anything to keep the estrogen away that I am going nuts thinking about it. My biggest concern is that my mom had an early BC and she didn't like the SE from tamox. so stopped taking it and took nothing but unfortunately she ended up with mets to the brain, etc. and passed away 7 years later . If I hadn't had a front row seat to that horror show I probably would agree with the onc. & say yippee I don't have to take anything! But I am so flipping scared the same thing will happen to me. So my question is has anyone had an ooph & then started an AI and if so just how bad/good was it? I just don't know what to do! Is it too late to get an Oncotype done? I am BRCA negative.
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