Second Opinion
My dr. said it was very rare, but I never could get over the feeling that maybe my treatment the first time wasn't correct, but I didn't have the guts to bring it up to the dr., figuring what's past is past.
Now that I've finished treatment, I have the feeling that the attitude of my oncologist is - well, just live with it and when you have symptoms that may be metastases, then come see me. No scans of any kind were done since June, near the end of my chemo (which did show significant shrinkage of my 8 cm. tumor). I feel like there should be more scans (PET, CAT, or bone) to see what is going on now. I have lots of pain lots of places, but oncologist says stuff like - chemo ages you 10 years, so you will have aches and pains, or - if you had arthritis before, then the severe pain you are having in your back is just magnified because of the chemo. All of which may be true, but I feel there should be more done.
At this phase in my journey, is it worthwhile to go to another doctor at another hospital 2 hours away, and how do I go about doing this? Or is it typical following treatment to just sit back and wait to progress to Stage 4? (Since I'm triple negative, I can't take any hormone therapy.) Do I just call them up and tell them my story? Would that hospital request records from my current doctors or would I have to get the records myself directly from the doctors.
Would larger hospitals have clinical trials, or is it too late, since I'm already done with chemo? I just want to do everything I can to beat this.
Thanks for any information you can share with me. I really appreciate any help.
Linda
Comments
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If you feel uncomfortable
If you feel uncomfortable with what your doctor is telling you, then you should definitely get a second opinion. You will need your medical records, any scans that you had, and maybe your surgical slides. My first oncologist blew me off, like yours is doing, for 4 months. when he finally did a ct scan, i had a large tumor in my liver and numerous swollen lymph nodes. I do not want to scare you, but I really think you should consider a second opinion. I also had bad back pain. I switched to another doctor! You amy want to do some research on the doctors at the other hospital, you say at the end of chemo, there was some shrinkage, did you have radiation? did the tumor disappear or did it just shrink? If you have not had any tests since june, and you are having symptoms, your doctor should be taking you seriously. I do not know much about triple negative since i am her2 positive, but i still think you should see someone else. Please let us know what happens.0 -
Foxchasemeena1 said:If you feel uncomfortable
If you feel uncomfortable with what your doctor is telling you, then you should definitely get a second opinion. You will need your medical records, any scans that you had, and maybe your surgical slides. My first oncologist blew me off, like yours is doing, for 4 months. when he finally did a ct scan, i had a large tumor in my liver and numerous swollen lymph nodes. I do not want to scare you, but I really think you should consider a second opinion. I also had bad back pain. I switched to another doctor! You amy want to do some research on the doctors at the other hospital, you say at the end of chemo, there was some shrinkage, did you have radiation? did the tumor disappear or did it just shrink? If you have not had any tests since june, and you are having symptoms, your doctor should be taking you seriously. I do not know much about triple negative since i am her2 positive, but i still think you should see someone else. Please let us know what happens.
Meena - I was hoping to hear from you, as I remember you saying that you went to Foxchase. That is where I'm interested in going. How hard is it to get in there?
The chemo shrank the tumor and lymph nodes, then I had surgery to remove what was left; one of the lymph nodes was positive as shown by the pathology report after the surgery. Then I had radiation. But it's that one lymph node that has me really worried. Thanks for the info.0 -
Hi Lindalinpsu said:Foxchase
Meena - I was hoping to hear from you, as I remember you saying that you went to Foxchase. That is where I'm interested in going. How hard is it to get in there?
The chemo shrank the tumor and lymph nodes, then I had surgery to remove what was left; one of the lymph nodes was positive as shown by the pathology report after the surgery. Then I had radiation. But it's that one lymph node that has me really worried. Thanks for the info.
I am sorry that you have to deal with cancer for a second time.I understand why you do not feel comfortable and believe that you should listen to your intuition and seek a second opinion and more caring oncologist.
I was diagnosed with stage IIIC Er/Pr positive in 2008. I had mastectomy, 6 cycles of Chemo and radiation. After I completed invasive treatment I have been seeing my oncologist for regular check up every 3 months. Check up include blood test and examination of breast, lymph nodes, liver and lungs (breathing). It is my understanding it is a standards of care for the first two years after diagnosis. If I complain about pain or doc suspect something the necessary test are scheduled asp.
I also changed oncologist about 8 months ago, since I realized that my first one has lost interest and compassion for me (he is very famous scientist and prefer very difficult cases).
Yes, you do need your files and scans, pathology reports.
Good luck
I am sure you are on the right path.
New Flower0 -
Linda, I rarely say this,
Linda, I rarely say this, but I would definitely get a second opinion and maybe a new doc. And don't give up! I was diagnosed with 3A to begin with in 1987. I have been Stage 4 for 2 yrs this April. And I plan on being around another 24 yrs, if I can!
And your instincts may be right about the initial treatment--I am not a physician and I can't say. But once trust is gone, it is gone and it is probably time to move on. Also, if a doctor did miss something, he/she may then be too defensive to focus on you properly. That is my opinion. Below is a link re DCIS and rads.
Radiation Helps Prevent Recurrence0 -
Before my treatment, when ICypressCynthia said:Linda, I rarely say this,
Linda, I rarely say this, but I would definitely get a second opinion and maybe a new doc. And don't give up! I was diagnosed with 3A to begin with in 1987. I have been Stage 4 for 2 yrs this April. And I plan on being around another 24 yrs, if I can!
And your instincts may be right about the initial treatment--I am not a physician and I can't say. But once trust is gone, it is gone and it is probably time to move on. Also, if a doctor did miss something, he/she may then be too defensive to focus on you properly. That is my opinion. Below is a link re DCIS and rads.
Radiation Helps Prevent Recurrence
Before my treatment, when I was trying to decide which chemo schedule to go with, my oncol. said "listen to your heart, it'll tell you what to do". Now I pass these words on to you. As CC said once the trust is gone, it's gone and you have to trust yourself.
Good Luck with your decision.
Sher0 -
Linda...
Yes! yes, yes, yes! Get a second opinion. Don't just take everything that your Dr. is telling you, as the final word on your treatment/health. Especially when you obviously have doubts. And if you are questioning it, then you do have doubts.
It is worth the trip and worth the time. Call the hospital and ask for the name of an oncologist there. And then tell them you need to get a second opinion.
It's your life that is at stake. You have to advocate for yourself on this. Please get a second opinion. If they agree that what your present oncologist has done, great! If not, then see what they can do for you.
Wishing you the best!
CR0 -
Second opinion is ALWAYS in orderCR1954 said:Linda...
Yes! yes, yes, yes! Get a second opinion. Don't just take everything that your Dr. is telling you, as the final word on your treatment/health. Especially when you obviously have doubts. And if you are questioning it, then you do have doubts.
It is worth the trip and worth the time. Call the hospital and ask for the name of an oncologist there. And then tell them you need to get a second opinion.
It's your life that is at stake. You have to advocate for yourself on this. Please get a second opinion. If they agree that what your present oncologist has done, great! If not, then see what they can do for you.
Wishing you the best!
CR
Just chiming in here, Linda, to say a second opinion is always in order whether it's two hours down the road or a day's flight away. Within five minutes of getting the formal diagnosis from her surgeon, Moopy just plain told him we wanted him to refer us to a second oncologist at a National Cancer Institute hospital. I was concerned that he might feel insulted (Moopy wasn't concerned at all, as it turns out), but he agreed that it was the wisest thing to do.0 -
Don!t Wait!
This is YOUR life...not the oncologists' life..I dare say he wouldn't give that recommendation to his wife, daughter or mother! ! That "wait and see"
crappola! If there's one thing I have learned through all this, I,too, am triple negative, is that we MUST be proactive in being our own advocate for our life! I worked in the medical field for years...Learned much about doctors, etc.. Sadly after years of their being in practice, many become " numb" to their patients...it becomes routine to them...I told my 3 physicians at the very beginning..THIS IS MY LIFE! It's not routine to me...I made sure I had their attention!
I would urge you to get as many opinions as you want! And if you feel scans, etc will give you peace of mind, demand them! Don't be afraid of sounding like a " you know what"...I had another scare in October...2 said the mammo looked fine, 2 said it looked suspicious, my surgeon was the tie breaker, saying it did NOT look suspicious..sooooooo.... I said well I want to be sure...he agreed..I had a BSGI TEST...NEGATIVE....I have no problem voicing my concerns about my body and health and demanding what I feel is necessary to stay cancer free, as best I can...
I always tell people if a physician balks at you getting second and third opinions......RUN!
I am 17 months out of surgery(lumpectomy) chemo and radiation...triple negative, no lymph node involvement..stage II...I am on the 6 month between visits with my oncologist...
Please keep us posted...be demanding..it's your life
I wish you the best
Nancy0 -
Once trust is broken it isMAJW said:Don!t Wait!
This is YOUR life...not the oncologists' life..I dare say he wouldn't give that recommendation to his wife, daughter or mother! ! That "wait and see"
crappola! If there's one thing I have learned through all this, I,too, am triple negative, is that we MUST be proactive in being our own advocate for our life! I worked in the medical field for years...Learned much about doctors, etc.. Sadly after years of their being in practice, many become " numb" to their patients...it becomes routine to them...I told my 3 physicians at the very beginning..THIS IS MY LIFE! It's not routine to me...I made sure I had their attention!
I would urge you to get as many opinions as you want! And if you feel scans, etc will give you peace of mind, demand them! Don't be afraid of sounding like a " you know what"...I had another scare in October...2 said the mammo looked fine, 2 said it looked suspicious, my surgeon was the tie breaker, saying it did NOT look suspicious..sooooooo.... I said well I want to be sure...he agreed..I had a BSGI TEST...NEGATIVE....I have no problem voicing my concerns about my body and health and demanding what I feel is necessary to stay cancer free, as best I can...
I always tell people if a physician balks at you getting second and third opinions......RUN!
I am 17 months out of surgery(lumpectomy) chemo and radiation...triple negative, no lymph node involvement..stage II...I am on the 6 month between visits with my oncologist...
Please keep us posted...be demanding..it's your life
I wish you the best
Nancy
Once trust is broken it is hard to stay with a doctor. I look at it this way, we have enough to worry about and your quality of care should not be one of them. Best Wishes.0 -
Linda .. Just my 2 cents ... Walk, run, skip or hopcahjah75 said:Linda
I too would seek out a second opinion. It seems that you have lost trust in your onc. I think you would feel much better in knowing what a second onc has to say. Wishing you the best.
{{hugs}} Char
and PLEASE get a 2nd opinion. I can not imagine the suffering and emotiional strain you've been going thru. If available, and insurance permitting -- PLEASE go the 2 hours, and get a 2nd opinion.
Life is uncertain, we don't know what is right around the corner for any of us -- however, it -- we try to eat right, rest, exercise -- and seek professional medical care when needed .. a 2nd opinion is needed here. Sorry to be blunt. Just my opinion.
Strength and Courage,
Vicki Sam0 -
Please come to Philly!VickiSam said:Linda .. Just my 2 cents ... Walk, run, skip or hop
and PLEASE get a 2nd opinion. I can not imagine the suffering and emotiional strain you've been going thru. If available, and insurance permitting -- PLEASE go the 2 hours, and get a 2nd opinion.
Life is uncertain, we don't know what is right around the corner for any of us -- however, it -- we try to eat right, rest, exercise -- and seek professional medical care when needed .. a 2nd opinion is needed here. Sorry to be blunt. Just my opinion.
Strength and Courage,
Vicki Sam
and get a second opinion.
I had a very positive experience at Fox Chase. I left you a PM.
Jane0 -
Yes! Yes! Yes! Get a second
Yes! Yes! Yes! Get a second opinion - if for no other reason than that it will help give you peace of mind that you have done everything in your power to beat the beast. This is especially true since you've had a recurrence and you've lost confidence in your oncologist. Listen to your heart, Linda. xoxoxo Lynn0
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