CALLING ALL STAGE I SISTERS
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Group Hug
GoodNight♥
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OK ladies I have a question and need help...tried on another thread and it stalled (I have an uncanny ability to post and completely stall a thread...
)I had my last Herceptin in July and am meeting with my onc on the 18th of August.
I have worked myself into a tizzy over this appointment because in the past when I asked 'How do I know when I am NED?' I was told, 'You were NED after your BMX'.
REALLLLY???!!!! Then why did I just go through chemo hell and a year of Herceptin??? (Ok I know why but still, talk about brushing aside my fears)
When I asked about 'What is next? Scan's? ect..." I was told "We only do scans if you are symptomatic." I was not symptomatic with my first dx!!!!
I am supposed to meet with my onc every 3/6 months for the next 3 years with alternating mammo/MRI each year. Mammo??? I had a BMX, all the mammo shows is skin an tiny bit of tissue and implant! What about chest wall? What about Lymph nodes? What about everything else!
I don't know how to push for scan's and better follow up care because I don't know how to ask or what to ask. I don't have an advocate who can help me and since I live in such a rural area I am worried about pissing off the only onc in the area. I have always been so taken aback by the 'because I say so' attitude that I really haven't responded well when I get these 'pat' answers and am now at a loss on how to proceed and stand my ground. All I know is I NEED to know that, right now at this moment in time, I am NED or not...I cannot move forward with this constant worry and doubt in the back of my mind and "because I said so" just doesn't cut it for me.
Any suggestions???
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Make room for me, I want in the {{{group hug}}}
Love you all ♥
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p2bhealthy - my follow up consists of six month check ups with my onc and an annual mammogram. That's it. Also within the year, there is the annual physical with my GP, which also includes a clnical breast exam along with PAP, etc. I was told the same thing about scans. That seems to be consistent with other women I've talked to. Not sure what to suggest.
Sherri
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I guess I am just frustrated and scared...I really think that a baseline scan should be done to make sure that everything that has been done over the last 14 months worked. If it has great! I can at least put that nagging worry to rest. If not, then I can get back in the fight. I also have three out five local friends who were dx'd with 6-12 months before me who were told they were NED and 2-6 months after getting their port's removed they were dx'd with mets. 3 out of 5!!!
I was SOOOOO compliant throughout my surgeries and treatments, never complained and always putting everyone at ease. I just don't think my onc really understands my fears.
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michelle...i should say fortunately or unfortunately after I finished my Herceptin, ask the DR the same questions.
He said no scans no nothing.
Mammogram once a year
Every 3 months follow up with him for TM and complete blood work.
He also does breast exam every 3 months.
Now i see him every 4 months and if he doesn't mention anything i will continue doing it. Because it was suppose to be once a year after 5 years.
Gyn once a year.
Complete annual physical once a year by my PCP.
BS once a year more breast exam. I feel my breasts are examined 6 times a year professionally.
Val there is always room for all of us.
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michelle...i should say fortunately or unfortunately after I finished my Herceptin, asked the DR the same questions.
He said no scans no nothing.
Mammogram once a year
Every 3 months follow up with him for TM and complete blood work.
He also does breast exam every 3 months.
Now i see him every 4 months and if he doesn't mention anything i will continue doing it. Because it was suppose to be once a year after 5 years.
Gyn once a year.
Complete annual physical once a year by my PCP.
BS once a year more breast exam. I feel my breasts are examined 6 times a year professionally.
Val there is always room for all of us.
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Rae - I have been feeling the same way. Twice I broke down in my internal medicine doctor's office. He was so kind.....told me the words my mother says to me.... this is just a phase that you will get through. More importantly, he told me to buy a supplement called 5htp... I take 100 mg at night. It took a couple of weeks but I truly see an improvement now.
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Michelle ~ I understand your hesitancy about future scans ~ yes? No? When? Why? Do I really need that? Don't I need such & such? Why not?
I see you will have alternating MRI/mammos. I haven't had an MRI since the one before my lumpectomy so they knew if the lump I had was the only one & if there was anything in the other breast. I do plan to ask my onc at my 2yr appt which is set for Dec 6, if they will be doing an MRI on me for a check-up. I have a feeling it would only be if my mammo showed something suspicious. That kinda scares me, really. Especially when I see that other sisters have them as part of their checkups.
I would guess I could say I was NED at this time, but it just feels weird to say that so I never do. It scares the crap out of me. I have no evidence of disease that they KNOW about, but they don't know what the heck is going on inside my body other than bloodwork would show if something were off in the levels. My prev ck-up in April showed my ionized calcium level to be a bit high & I was told that might have warranted a bone scan (it could be a sign of bone mets) but I had already had one last Nov, so she would not order one at this time. [It was back in the normal range this past time & I'm certain it was high due to my increase in Vit. D3 supplement] I know I am checked super good by my NP or onc, whomever I'm seeing - heart, lungs, thyroid, ankle/arm swelling, stomach, abdominal region, hips, breast check, along w/bp, temp, pulse. She asks tons of Q's to gage how I'm feeling, how my body is 'working'.
If it were me, sitting w/my onc., I guess I would say, "Okay, everything is good, right? My bloodwork (or last mamm/MRI, whatever) is good? Okay, what I really need to hear to help me move forward, for my peace of mind, is that I am NED at this time. That's what I need. It may sound stupid/unnecessary to you, but it's what I need to hear/know." If they said, "Because I say so." I'm afraid I would have to say, "Well, I know you mean well. But, I really can't go with just that. Everybody is different & I need to hear more. I just need to hear those words."
The only way I would push for scans is if I really needed it/them to ease my fears. I think my onc would tell me though that they wouldn't do them unless they feel there is a need to. That it would be unnecessary. I have heard of gals pushing for a certain scan & they have rec'd it, tho I think that really depends on your dr.
I really think, Michelle, that we do need to hear those words, or something similar, to help us move forward. I wish I could go with you, just to give you some support but, I don't think I could make it to AZ by Wed. lol One time my NP told me, "Just go out & live life." That helped me.
On a personal note, I considered myself free of disease when I had that SFBC removed from my breast. My problem is what is going on in my head emotionally. And my onc is not going to help me with that.
I hope I haven't gone on too much. Guess my thoughts just keep rolling sometimes. (that is my problem lol)
Please let us know how your Wed appt goes, I will be thinking of you. In fact, I'll be the little fly buzzing about, hitting the walls, saying, "You go girl! You say what you want, you ask what you want. You have that right & they need to answer completely, to your satisfaction."
((((((((((♥Hugs Michelle♥))))))))))
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Michelle...I can guarantee you one thing that living in a rural area has nothing to do what test they do.
I live in a big city half an hour north of Manhattan with so many DRs.
I really believe because of our stage1 DX they are not doing much once you are done with original treatment..
We will be right in that room with you on Wednesday. You have lot of sport from your sisters here.
♥♥♥♥
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{{hug Rae}} I agree with you about when someone asks how you are doing & you say, "I'm good." and that you can tell from the look on their face that's the answer they want to hear. I'm with you on that one.
I don't talk about any of this except here either. It's just too hard to explain when they have not "walked a mile in my shoes." Not even my DD's. I know it scares them.
A big, fluffy new bath towel. S.W.E.E.T.
Welcome taranebraska ~ Cindy ~ vanderlady. Wonderful to meet you.
Hi Sherri!
Off to bed!
{{{hugs to all}}}
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Hey all my sistah's!! Wow you all have had a lot to say since I've been away... I had to read up on 5 pages to catch up and it's only been a week.
I'd say ya'll are a bunch of jabber jaws. HeeHee!!I missed you all while I was away. I decided against taking my laptop with me. I only had the cell phone and I'm not really good at logging onto and into websites. I'll eventually figure it out. LOL!! I do FB and myspace because it's already configured and goes straight there for me with the little icons on my phone.
I promise to try and upload some pics soon from our vacation. I didn't take a lot just a few of the ocean, my granddaughter, and the 203 step lighthouse we climbed to the top of!!! Yea me!!! hehehe!!!! By the way... do some of ya'll remember when we started the whole weight loss thing? I said I was going to wear a 2 piece... well, I did! It was a bikini, the bottoms were the boy shorts but I did it!!! No one took a picture of me though 
so I can't post that. grannydukes I loved that prayer; Cake, glad things have been going so good for you!
Welcome to all the newcomers!!!!
Renee
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Cindy (nanabanana) - not sure if anyone answered about the job. Depending on how long you have been with your employer, check into FMLA, Family Medical Leave Act, which may be able to keep you safe while you undergo treatments. Look into it and file and then do what you have to to take care of yourself. I don't know about chemo because I did not have it but I worked full time during rads. I do understand, however, that after chemo the body is probably in a much weakened state to do rads while working. Under FMLA however you can possibly do intermittent where you don't take the 12 weeks straight but only days/weeks as you need it. Give it a try.
Hi, all my sisters.
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taranebraska: Last fall I was also dx with 2 different types of breast cancer and mine were around approximately the size of yours as well. As a result of having 2 tumors - chemotherapy was also recommended for me, as well as radiation therapy.
Charmaine
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It is so great to come hear and read everybodies feelings and emotions of where you all are at with being diagnosed with breast cancer and the related.
I cannot confide in my husband! He does not like to discuss health related issues, and in fact gets angry if I attempt to speak one time too many on the topic of my cancer with him. (feels that there must be more positive things I can discuss in one day).
So thank goodness that I now have a 'mental health nurse' that I can openly discuss things with. As being dx with breast cancer and having to go through the treatments and ect has had an immense impact on my life mentally and emotionally.
You ladies here are a 'godsend'!
Charmaine
PS My husband was not always this cold. Only became this way over the past couple of years. He has a disability that he feels he has enough to deal with (ankylosing spondylitis).
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Hi all,
Michelle - I was told the exact same thing by my oncologist. At first I was upset, and wondered if he knew what he was doing! I checked postings here and at komen.org, and it is indeed the norm to NOT have scans unless they have some reason to think something is wrong. Like you, I want someone to be able to tell me WITH CONFIDENCE that it is GONE. My radiation oncologist tried to assure me that I no longer have cancer. Which had me thinking, so why am I having 33 radiation treatments??? She said it is just "insurance". I do understand the logic of why they do not want to expose us to multiple tests that involve additional exposure to radiation. I guess I just want proof that the cancer is gone. My medical oncologist did tell me that the "index of suspicion" is very low for cancer patients, however, and that if I have any pain that persists or any symptom they cannot readily account for, that it will result in scans to check it out. He said to be sure to let him know if anything is out of the ordinary. Still, I'll be relieved when I get my mammo and ultrasound six months after radiation. I won't really believe I'm in remission until that happens.
Blessings,
Karen
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HI patoo...missed you girl.hope all is well.you sound so upbeat.we need you here more often..everyone needs some sunshine...
xoxoxo
K
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Thanks granny. Vacation took me away and it was a break I needed. These boards can take on a life (mine) of their own. Not that I have a life anyway, but... just saying.
Karen - hang in there. Early in our journey is the hardest. Just check all the signatures as you go through the threads and you will be encouraged at so many long survivors. The blessing is they continue to come back to share and offer support.
Hi to all.
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Hi there... I have not been on this board for such a long while, but there you were my motivator to exercise. I am almost six months out of chemo and I have begun to exercise regularly. Please keep me in your prayers as I was never motivated to exercise before my experience with BC.
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Zip, exercise is one of the top weapons against reoccurence. Hang in there.
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and against sleepless nights!
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And for weight lost of course with proper diet
Hi Zip.
Hugs sisters.
Welcome Karen.
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Thank you Sheila, I needed that. About to get ready for treatment 6. I don't deal well at all with heat. After a nice cool summer the heat finally hit us this weekend and I am not looking forward to it. It really exacerbates the irritation of the radiation on my sensitive fair skin.
So far the side effects have not been bad. What has been difficult is the uncertainty. Ten years ago I "walked the Valley of Death". The Dr. did not think I would survive the acute pancreatitis. I am a survivor. I know that with the lord's strength and that of my sisters I will survive this. But oh, it is so hard.
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Yes chabba, it can be hard but you ARE a survivor and an inspiration to all of us. Hang in there.
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Just need some input. I'm going crazy! Had my lumpectomy, not given any other choice, to find out another 3mm nodule was found separately from the 1.2 cm nodule.Would have thought about a MX had I known.BS says I def need radiation ,7weeks and tam for 5 years.Onco Dx is not back for 3 weeks but need to make a decision about chemo. BS says score should be low and she doesn't think I need chemo. She is so anti chemo and hasn't even given me options through this. I was told that its our choice not the docs. I'm so scared of chemo but after finding another nodule I have leaned more towards chemo no matter what. I am waiting for an MRI result to come back. maybe that will help but my BS makes me feel like I'm over reacting.There were questions about the nodes which turned out to be "tumor cells"so they are neg then questions about margins but she decided they were ok. With all these questions and her shocked by the second cancer how can I trust her opinions. I really need to know others thoughts on this.Its too late for the surgery outcome but I think I need to at least do all I can even if it is a low risk. Isn't it up to the patient whether the doc agrees?I see onco for the first time on thursday but really need to know if I'm not being too severe in my decision.
Anybody have any thoughts. It will be so appreciated.I've been so stressed out.:(
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Hi inthepink...glad you found us.
I believe its up to the oncologist to decide your treatment not the BS.
Before you stress out wait until Thursday so you and your DR can come up with the right treatment for you. I know its very overwhelming for you right now!!!!!!!
((Hugs))
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Inthepink - I agree with Shelia - your oncologist is the one who determines your treatment plan not your BS. Everything is so overwhelming until you get a plan in place. Your doctors will give you options and it is your choice on what treatments you want to do. Let us know what options your onc gives you/what you decide on. Don't forget, if you are uncomfortable with the doctor you can always get a 2nd/3rd opinion.
((((HUGS))))
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Inthepink - ditto the above. My question is why are they doing the Oncotype test if they don't want to wait for the results? That test gives an indication of whether chemo will be of value to you. My BS was the opposite of yours and told me I definitely would have to do chemo. When the lumpectomy results came back she still thought so and sent me on to the med Onc. He ordered the Oncotype which came in at 13 and so advised chemo would be of little benefit - I did not do it.
Talk with your med oncologist and get a second opinion if you are still unsure.
HUGS.
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