Feeling lost and alone.
I was diagnosed with IDC on March 4...and had a right breast mastectomy with immediate reconstruction on Match 18. My surgeon released me 1 week post-op with only the information I drug out of him, which was very little. He said my oncologist would tell me. I met with her once, but she didn't tell me much more. The one, estrogen positive tumor was (graded?) at an 18, so she said I needed no chemo. Now that I'm researching, I'm finding out I wasn't told hardly anything other than I need to be on Tamoxafin. Because I'm high risk for taking it, I planned a hysterectomy and oophorectomy, so I could take Arimidex instead...but a day before surgery I cancelled. I've made calls to my oncologist, but the receptionist just reads from a paper. I scheduled another appt for the 28th of this month, but because I've decided not to take Tamoxafin or Arimidex, I feel as if no one cares. I hear people talk about their teams...I don't have a team. The only one who seems to care is my plastic surgeon...but that's because I'm still working on the reconstruction. I'm having terrible, burning pain on the back and underneath side of my right arm, as well as under my arm, across my chest, and part of my shoulder blade. I've researched and found this to be common from having lymph nodes removed, yet none of the doctors seem to care or say they can't help me. I'm tired, sad, and feel totally lost... What do I need to do? Can anyone help me?
Comments
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sounds like you need a second opinion, or at least a doctor who takes the time to explain what's going on. Do you live in or near a big city with good hospital? I am being treated at a very good hospital, UAB in Birmingham, but I still went to MDAnderson in Houston to get another opinion for treatment plan. It was worth the trip, both doctors agreed, but if I ever need someone else's input, I have already laid the groundwork. Hope you get some answers, this is a very resourceful group.
Wilsie
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Sorry you are feeling lost. If it were me, I would get all of the records you have so far and find another oncologist to give you some more definitive answers and a treatment plan. Best wishes~
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Hi, I totally get it. Been there, felt lost, felt alone....all that. It's a lonely road. I would definitely seek another doctor. I'm on my fourth oncologist. I finally like the one I have now, but also I came to recognize that I must be my own advocate and read and study and read and study some more and then seek out alternatives to dealing with pain and other side effects because the mainstream medicine folks will always tell you they don't know what your talking about, it's in your head, or no one has ever complained about that before, etc. It was shocking to me until I got used to it. Now I just deal with my oncologist as little as possible and do my own thing with my naturopathic doctor and my acupuncturist. You are so "new to this", I know your head must be spinning and you probably don't feel strong enough to advocate for yourself right now, but you'll get there. In the mean time, there a lot of very nice, helpful people on this site, and some medical centers can offer "nurse navigators" who can assist you with navigating this confusing subject. Or perhaps a friend who has been there or a support group in your community. Please reach out for help, it's out there, it's probably not your "medical team", like you said. Keep us posted. PS I opted out of Tamoxifen too. It's your decision, no one else's.
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You a team that will work WITH you. Talk honestly with your oncologist and lay your feelings out on the line, ask to be hooked up with a nurse navigator or clinic social worker. If they are unwilling to work with you, find someone who will!
You don't say what stage or grade you are; but especially without chemo, you really do need to at least consider an anti-hormonal, and as kayb says, find out what the benefits would be statistically for you. In my particular case, chemo reduced recurrence chances by 20%, while taking an anti-hormonal for 5 years reduced it 40%.....a HUGE benefit in my case.
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Cake, you do not need to wait until your appt. to get a copy of your pathology report. Call the hospital, tell them you would like a copy & when would be good for you to pick it up.
Much easier to get advice when you have more facts. Ruth is correct, if you do not need chemo, that's fantastic but at least give the Tamoxifien or Armidex a chance. You can take it for a few months and quit if its horrific.
Most of us on AI gets used to it. I would love to quit taking them, but not going to happen. The risk is too high.
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Holeinone is right on target, those records are legally yours. You don't even have to call, just show up at the records department & wait for them to print them off. I always, always get copies of all medical tests and procedures for myself. I want to see what they actually say, not just what they tell 'the patient'. I have an excellent relationship with my doctors, but believe one should 'trust but verify'. And I do think that the more you know, the more seriously they take you.
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Thank you, Everyone!!
I will call today and get my records. To date, this is all I've been told: I had IDC, it was right at 1cm, stage I, estrogen positive, my lymph nodes were clear, and after testing the tumor, she said it was an 18, and I would not need chemo. Because I have severe endometriosis and a history of a possible stroke, plus my father died of a massive stroke, that puts me at high risk taking the Tamoxafin. I work on my feet 12-18 hours, 6 days a week. With all that, it scares me to take something that will keep me from working, causing my business to close. I have been researching and talking to friends...but most have went through chemo, and/or radiation and I feel guilty asking them when theirs is much worse.
I so do appreciate all your wonderful comments and insights. After seeing my oncologist on the 28th, if I don't get the answers I need, I will get a second opinion.
Many blessings on you all!!
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Hi CakeLady - So glad you found us. This website has a wealth of information.
My stats are similar to yours. While our oncologists can see that our prognosis is very good, it takes us time to understand it. I know I remember very little from my first appointment. Everything I know was learned here. Please talk to your doctor about what he really thinks in terms of stroke risk and the use of tamoxifen. It may be similar to that of birth control pill users. It really is a wonder drug and as other ladies have said the oncotype score assumes the use of tamoxifen. Trust me, most of us don't want to take it, we do because it is a powerful weapon in the BC arsenal. I wanted to opt out based on my very low oncotype score, but my oncologist said I'd be putting a lot of faith in that one number.
Best of luck!
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Cake,
For those of us who are early stage, we don't really have a "team". We see the surgeon, until the that part is complete. We see the plastic surgeon until that part is also complete. After that, we're left with only the oncologist which we do have follow up appointments with from then on. My diagnosis is similar to yours, my oncotype was 16 so the oncologist said no chemo. I like my oncologist and totally trust his judgement. To me that is ultra important. One tip, never talk with the receptionist when you call with questions. At bare minimum ask to speak with the nurse. My suggestion to you would be to write down your list of questions and take them with you to your next onco appointment. Ask them one at a time, any and all questions and concerns you have and remember the only dumb question is the one that goes unasked. Use that time to get a feel of your oncologist and if you are still not satisfied with her find another one. It is vital that you trust and have a good relationship with your onco because for us early stagers the onco is our "team". Take a little time to let all this sink in. When we hear we have cancer we have this automatic need to deal with every aspect of it right now when the fact is for a stage 1 grade 1 tumor it was growing in us for around 7 years before they found it. A few weeks to decide about tamoxifen or a hysterectomy won't make a difference. Getting all the facts and making an informed decision is much more important than making a quick decision. ((Hugs)) Susie
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Again, thank you ladies so much!! I truly have found more information on here...that I understand...than I have anywhere. What a blessing!!! I hate anyone having to go through any of this...but it really does help knowing I'm not alone.
I'm 9 weeks out from my mastectomy...and I go for my last expansion next week. Then, we'll schedule my reconstruction surgery. I'm ready to have that part done with.
As far as my risk for birth control pills, my gyno took me off them at 35 because my risk of stroke was too high. But...I'll write down all my questions and find out better percentages, etc. I'm not giving up.
Hugs and blessings!
Becky
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CakeLady....I agree with the other posters here. You need more info, you need docs to be willing to have discussions with you, and you need to base your decisions on facts, not fears. No one really WANTS to do hormonal tx, and it sounds like that may in fact have contraindications for you. However, that doesn't mean there is nothing else you can or should do. You mention your work/business scenario, which sounds pretty intense, stressful and time consuming. Everyone has to in reality, earn a living, but I hope you can find ways to balance your work with a healthy lifestyle of sound nutrition and daily exercise.
If you are truly NOT going forward with any other options to lower your estrogen levels, a healthy weight (a BMI on the lower side of normal) and exercise is not just recommended, I will suggest it is absolutely necessary for you, as a way to reduce your risks of recurrence. The more of the standard medical arsenal you chose to not do (and that's a personal choice...I don't mean to sound judgemental) the more it puts the "responsibility" on you to tilt the odds in your favour (imho).
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Becky - nihahi brings up an excellent point. There is a shot you can take once a month (lupron?) that shuts down your ovaries and allows you to take an AI I think. Do a search for it here or on the main pages of BCO. It may be a possibility.
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Thank you nihahi and farmerlucy,
Right now, I'm not totally against taking anything...but I would like to know if there is something else out there. I haven't been given any options...just protocol. I will definitely check out the Lupron. I took it or something similar years ago for endometriosis. I just remember that was an option.
I'm 5'1", weigh 105, eat fairly healthy, and get exercise....less on days I work the longer shifts, but more on other days.
I called the hospital today to get a copy of my records, but they said I had to come in and fill out a form...then it will be presented to some board...then if they agree, it will be sent out next week. Those are my records. I'll try tomorrow to get them from my surgeon and/or oncologist.
I appreciate everyone's comments very much!
Blessings,
Becky (cakelady21)
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It is fine to have to sign something, but they can not withhold the records. They are YOURS.
One thing I always do when I have a doctor appointment is that I write down all my questions in a notebook & mark them off, make notes etc. as they're answered. That way I don't forget anything. I also try to develop some sort of bond between myself and him/her. Ask about their family, hobbies, whatever. I think it is important that they be reminded that they are treating a PERSON, not just a disease.
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Thank you, riithbru!
Yes, I have questions written down...lots of them. Lol When I saw her the first time, I was 2 weeks post-op from my mastectomy. I didn't realize I'd have to wait 2.5 hours, though. I was in terrible pain, and couldn't take anything because I hadn't eaten. She was nice, but I was hurting so bad I couldn't think about anything other than getting the pain to stop. I'll be better prepared this time!
I agree about the medical records. Never had that problem before....I'll get them..one way or another.
Thank you, again!!!
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Those records are YOURS. You do need to sign a release, but after that you are due a copy and they should be available immediately. Regarding a "team" a poster above mentioned if you are early stage you don't have a "team". That is incorrect, I'm DCIS and I have a team. It comes down to where you get your treatment. Whether you are going to a hospital/clinic with a multidisciplinary approach or individual Dr's. I go to MD Anderson and my team consists of breast surgeon, oncologist, radiologist and everything needed in between. They work together in every aspect and if I need to be seen for an issue that occurs out of the blue, I'm seen immediately. Everything is housed in under one roof, which makes it so much easier for the patient.
I encourage anyone when starting down this path, to research your options. Best wishes and I hope you receive the care you deserve. I too have severe endometriosis and had a partial hysterectomy (had adenomyosis as well). I was under 40 when I had it done (46 now) and was told at the time the risk of removing my ovaries at that time, outweighed the benefit. So, I have been fine and still have them. Will need to go on Tamoxifen and I was Grade 3, so feel I need to take necessary steps to prevent recurrence. -
Thank you, momto3boysaz!
I truly wish I had known about this site before I was even diagnosed. I was sent, from my gyno's office, to a general surgeon who specializes in breast surgery. He had done a bilateral breast biopsy in 2005, which was negative. He sent me to an oncologist. I'm not sure there are any clinics where I live that have all the doctors under one roof. My surgeon released me, and when I called him at 5 weeks out complaining of nerve pain, he said if it still hurt after 6 months, he'd send me to a pain clinic.
Every doctor so far has sent me somewhere else. Lol -
When I first met with my surgeon, I had to sit in front of the door so he couldn't escape (he was a very good surgeon, but apparently liked people better when they were unconscious). Once he figured out that he would have to talk to me, we actually developed a very good relationship. I would, for sure, mention (in a nice way) your concern about their delay in contacting you. How they respond to that may be a good indicator as to whether or not you want to continue working with them.
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I totally agree with both of you. I plan on asking plenty of questions...and also letting her know about the phone call from her receptionist instead of her. I've heard great reviews about her...but maybe she just prefers working with patients who need more treatments, and those who accept what she says without asking questions. I'll find out next week.
I'm a very quiet, non-confrontational person....but I can step up to bay if I need to. And I know I need to. Soooo....I will be sure and keep everyone posted as to how it goes! You ladies are more blessings than you know!!
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Glad you have a plan. Definitely let us know how it goes!
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I sure will, ruthbru! Thanks a million!
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CakeLady - wonderful advice here!
You are your best advocate. Great that your MO comes so highly regarded...just share what's on your heart and mind and SLOW her down so that she's HEARING you and meeting your needs...she is there to SERVE you!
Go to Walmart and select a pretty expanding file to begin to collect your records. Also, purchase a composition book ( you know those ugly black/white ones) and start your log. Take it with you!
Call your doctors offices, arrange to go in to complete whatever forms you must to get Your Records! Write down all the names and contacts in each office...business cards...you may need to call back so sugar goes along way. Use their names and thank them:). Do you have an appointment buddy to go with you to each visit. Find one and make 3 copies of your questions...dr, appointment buddy, and you...have your appointment buddy take good notes...our brains go on overload or record appointment if you must go alone.
After each appointment, test, MRI, mammo, blood work, photos, ask for records before you leave the office....review notes from appointment buddy, also write in your log to summarize what you heard and any new questions.
Breathe, it gets easier...but filling in the unanswered questions takes time...so ask
it's ok it's your body your life! We are in your pockets...(((Hugs)))
Cindy
I did tell my MO that I would NOT take Tami or AI...I sat on the other side of the room with very negative defensive body language...but MO listen answered questions wrote RX and told me to take some time. I think PTSD would be right...I needed time to brush off the dirt from the trenches recoup and begin to feel normal...and I realized that I had already faced so much and come through it ... that a pill that would reduce or prevent or delay mets was a good thing...I want time...so gulp I take AI and for me it has been a nonevent...very blessed. I've lost 3 dear GFs to MBC...I'll take my pill!
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Wow! Thank you, Cindy! I did get my notebook...so I will now get an expandable file. My husband went with me to the last one, I think he'll go to my next one. I did go to the hospital and filled out the paperwork for my records, but in the meantime, I called my surgeon's office and talked to a lady there about at least getting my path reports from their office so I'd know more than that the cancer was estrogen positive. She went above and beyond for me. She called the hospital, knowing why I needed the records, ordered them to be sent to her by fax, and gave them to me! One of God's angels for sure. I found out I was progesterone positive and HER2 negative. I wasn't told that before.
I've already started my list of questions...as well as concerns. I've a feeling I'll be there a long while! Lol But that's okay. If I have to wait 2 hours past my appt time, she can wait to answer me.
One reason I've felt so lost, is that I have 3 sisters living in the same town as me and I've kept them all updated with what's going on...yet I never heard a word from them after my surgery. No one called or texted, sent a card, or brought food. I was up cooking and cleaning 3 days post-op. I have found more "family" and support on here, than I have at home. I never cried when I was diagnosed, nor when I had my surgery. Not because I was strong, but because I was focused...and I knew I'd do what I could...and let God do what He would. But I've cried because I've felt all alone. Not that I didn't have a couple friends and my children there to support me...but because my other family abandoned me. I feel so much better now, talking to people who've shared their stories, encouraged, hoped, and offered support. Thank you all for sharing with me!! (((((HUGS)))))
God bless you all!
Becky
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Becky - you got it gf! Stay focus, one day at a time and trust God!
I think our families just don't get it! Like you had surgery get on with it...I think all the Pink October hype causes them to think BC is not a big deal. Also, they are probably wondering how this might impact their odds. It's a lifetime change...just not a surgery take chemo, rads, meds and kiss your cured.
During your go get em discovery find out what services your BC center offers...support group, exercise, LGFB, massage, social worker, lectures...and go.
We are in your pocket!
(((Hugs)))
Cindy
Oh, update your profile with path info! Kudos to BS sharp staff!
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Well, people can get strange during emergencies; some people totally drop the ball & others come out of the woodwork almost like guardian angels. I decided I didn't have enough emotional energy to feel upset about anyone who was not supportive because they either *completely uncomfortable & didn't know what to say or do, so did nothing (which is very bad, but I know that I did that sometimes in the past...but not now!) *totally oblivious or *it made them so scared about their own mortality that they just didn't want to/couldn't deal with it....whichever, it was not my problem.
Interestingly several years later, my sister-in-law (to whom I was pretty close) apologized to me for being so absent physically & emotionally during my treatments. Her own mother had died young, and she just couldn't cope with it. My brother, on the other hand, was in the oblivious column. Other than my husband, the family member I got the most emotional support from was my 91 year old aunt. She was an awesome lady with many life experiences, and she wasn't afraid to talk about hard subjects.
Sending you a hug! We are definitely in your pocket!
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I am truly humbled. The feeling of having new friends "in my pocket" who've been there and understand, brings much comfort, and a smile to this heart. I pray I can be in yours, too.
Only 3 more days, and I'll meet with my MO. I hope she makes the time to listen...and hear my story and concerns before just telling me what protocol is. I'm anxious to see what's going to happen.
I thought I did update my profile, but I see it's not showing...so I'll check again.
Thanks, Ladies!!
(((((HUGS)))))
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I had changed it...but forgot to make it public. LOL!
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Keep hanging in there & try to do something fun this weekend!
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Just checking in on you!! I've told my kids to stop by and introduce themselves to you! I'll be stopping by the next time I'm in town too! I've added this post to my favorites! Best of luck with your meeting. I have followed the advice of many of these ladies and my notebook stays with me and I write everything in it. I also have all my reports which have actually came in handy since in one case, I found an error in my original pathology report. it ended up being a typo BUT it listed me as grade 3 instead of grade 1.
See you soon!
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CakeLady - enjoy your weekend! Take your questions and a buddy and ask your questions.
We will be in your pocket so just reach in and squeeze for support:)
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