What would you do?

TriciaV · 09-02-2011, 04:43 PM

I was diagnosed back in January 2007 with stage 3c IDC, multiple tumors largest being 7cm and 9/27 nodes +. Anyhow after all my chemo and radiation and surgeries I went NED.

Well I have been having pain in my right back near my shoulder for about two months now, after trying everying to get rid of the pain I went to my Onc. He did X-rays and found a "spot" on my 6th right rib, had another set of x-rays and finding the same spot... My onc ordered a bone scan which I had yesterday and today I got the results that said it was normal. WHat should I do? What should I ask of my Onc? I know I still have this pain that has NEVER stopped hurting, the pain has never moved up or down or changed? What would you do???? ANy and all thoughts would be most appreciated!!!!

BonnieR · 09-02-2011, 07:09 PM

What DOES your onc think it is then??? It needs to be diagnosed. Could it be in your shoulder, like a torn rotator cuff or something? It sounds like you would feel better if you got another opinion. Can you see a radiologist or someone who can interpret these findings and make some conclusions? Meanwhile, please try not to worry until given more evidence. I know that is hard to do. Keep the faith.

Laurel · 09-02-2011, 07:11 PM

Well, Tricia, I would inquire of my Onc. whether the bone scan is sufficient to conclusively rule out bone mets to your rib. They will usually pronounce definitively that the scan would reveal the mets, or suggest further scans or a biopsy if they feel a question remains. Press your Onc. and let her know how worried you are.

Now all the above said, I must tell you I have had a sore left hip off and on for years post cancer. I have found it is irritated by certain positions in which I sit and by some exercise. My scans have been negative. I my case I may just be old and decrepit. You on the other hand, look quite young from your photo, so I doubt that is the case, however you do take anti-hormonal therapy in the form of Tamoxifen and while it does not cause the arthralgia associated with AIs it does affect your estrogen levels. This alone may part of your problem. We seem to be a bit "creaky" without good ol'estrogen. For instance my hip just kills me when I sit with my feet propped up on the coffee table, something I always did prior to my cancer treatment.

Good luck, be persistent, and when it proves to be nothing be extra thankful!

Becky · 09-02-2011, 07:51 PM

I would ask for a Pet scan of the chest and abdomen to be sure. Also, sometimes right shoulder/back pain can be indicative of liver troubles.

BonnieR · 09-02-2011, 10:21 PM

Becky's comment reminded me that I had right shoulder pain when having a gall bladder attack...but it was intermittent. Do you have any GI symptoms?
And Laurel, keep your feet off the coffee table! lol

TriciaV · 09-02-2011, 10:28 PM

Hello Ladies, Thanks for the input. I was able to get the radiologists report today but didn't get a call back from my Dr. yet and of course it's Friday and a Holiday weekend at that, so I am not sure what my onc thinks of it. I know he was concerned when the radiologists phoned him with the results from the X-rays about the spot being in the 6th rib and my onc ordered a bone scan right away, He did say that the radiologists did rule out a fracture or break. I just find it funny or interesting that two sets of X-rays done over two months apart pick up this "spot" on the 6th rib and they said it is exactly where I am complaining of pain at and also the X-rays showed some arthritis in the lower back and then the bone scan done yesterday didn't show ANY of THAT!!!!! So wasn't sure if I should just demand a Pet/Ct and go with those results or if I should call this bone scan good and move on?

TriciaV · 09-02-2011, 10:44 PM

Oh and also want to add when I was first diagnosed I went to my primary care dr. complaining of pain in my right breast and found a small lump. I told him on my first visit I thought I had breast cancer, he told me I was too young 31 at the time, no family history, and breast cancer didn't hurt!!! HUH!!! he felt like it was an old breast infection since my son was nearly 2. I told him I never nursed nor ever had problems with breast infections in the past... he said oh yeah they can lay dormant and then pop up but we will do a mammogram and an ultrasound just to be sure...so that very day I went in for the mammo and ultrasound and it showed 3 masses in seperate areas of the breast, the one I could feel and two others I could not.... he said YUP just as I thought masses of infection and put me on antibiotics and sent me on my way...after two weeks of the antibiotics it was of course NO BETTER. I went back he said it was a stubborn infection and gave me another round of another kind, took those and once again not better. I return panicking a bit insisting he do a biopsy he tells me if he does he could open up my body to becoming septic and orders more antiobiotics and also talks to me about seeing a psychologist... WHAT??? I refused of course and started trying to find someone else to see. I irionically worked for our local Hospice agency and knew one of the Dr's and had her take a look at me as a friend and she told me " Tricia I can not tell you what that is, but I can tell you that is NOT an infection, You need a biopsy" she called my doctor herself as a friend of mine and told him I needed a biopsy not antibiotics and he called me right after and told me effective right away I was no longer allowed to be seen in his office again and that I would recieve written notice in the mail within the next few days. I was left in shock and scared to death, But my friend the other Dr. helped me get into a surgeon right away and got a biopsy and I was diagnosed at that time with stage 3c and 9 positive nodes and the largest tumor at that time was 7cm very large...we looked back at the first mammos and ultrasounds that the first idiot Dr did and the tumors were the size of peas grrrrrrr but because of my stats and being Her2+ and my age those tumors were growing like wild fire.

TriciaV · 09-02-2011, 10:49 PM

My whole point to that last long message was I am a little jaded with the whole take a Dr at his word thing...or he KNOWS whats best...I feel like if I weren't persistant in the first place I wouldn't be here today!!!!

BonnieR · 09-02-2011, 11:04 PM

After the experiene you describe I think you would not be comfortable until a complete evaluation was done, with explainations of what is causing the pain. Nor should you settle for less. They can't just tell you what it isn't. They need to tell you what it IS. You deserve that.
I think alot of here have had sketchy experiences with our cancer journey and it has made us all the more proactive.
Meanwhile, keep the faith. And keep the pressure on!

Jackie07 · 09-03-2011, 02:52 AM

Tricia,

Yours is such a familiar story. My life-long brain tumor was not diagnosed until I was 30. And even with the huge headaches I was experiencing, the diagnosis was still delayed for more than 8 months. I switched my family doctor and then 'forced' the new one to give me referrals. Still, I had to tell him what doctors I needed to see. (A library volunteer who's a retired pathologist was the one pushing me to get things checked out. She not only saved my sanity, she saved my life.)

Even after two brain surgeries and two breast cancer surgeries and chemotherpies, my family doctor still wants to send me to psychiatrist whenever I makes complaints. But my oncologist who's known me for 8 years reacts differently. He knows how tough I am.

Doctors are trained to maintain a good patient-doctor relationship. Whenever there's glitches, they will 'dump' the patient (or encourage the patient to dump them)because it hinders effective communication and can do harm to both parties.

It's a shame that we can not completely trust all the doctors. I guess that's why we have support groups where we can share information and equip us with better knowlege and support.

Sending you good vibes.

sarah · 09-03-2011, 05:10 AM

What about having another radiologist from a different hospital look over the tests and let him tell you what he thinks it is/was.
also i think shoulder pain can indicate a lung problem sometimes.
if you're not happy or confident, check things out until you are.
health and happiness
sarah

pibikay · 09-03-2011, 06:58 AM

Please ask you Onc for a PET scan.That will clear the air.All the best

tricia keegan · 09-03-2011, 01:43 PM

I agree and would request a pet/ct, I had a troublesome bone scan last year and followed up with an mri and pet/ct and thankfully it was nothing sinister but worth it for peace of mind.

Lori R · 09-04-2011, 07:38 AM

Tricia,
Your description of how you had to be your own advocate reminded me that we can NEVER stop being our best advocate.

I encourage you to demand the PET scan. (not a Dr. so any other testing technique)

Take EVERY step possible to rule out (or detect) a cancer met.

Why would you not? Save time? I would bet that you would agree that a couple hours is a nominal investment. Hassle for Drs? Oh my....that's their job. Concern of overreacting? Ah yea....it's my life we are talking about here.

Go for it!!! Push to the point that you know in your heart you explored every test possible.

I was encouraged by a sister on this board to do so and I an convinced we found my liver met much sooner than if I had been passive.

I hope it is treatment related aches and pains but you have already proven you are one tough fighter and will manage regardless of outcome.

Please keep us posted....Lori

Ellie F · 09-04-2011, 11:33 AM

Can I agree with all that's been said by my wise sisters.
I was also a misdiagnosis for 18 months by which time I was stage 3c.My own doctor told me I was neurotic and as my 4.5 cm bc didn't show at all on mammograms this confirmed his resolve that I was imagining it!!
Ellie

BonnieR · 09-04-2011, 04:15 PM

Ellie, I hope you got a different doctor! How dare he call a patient neurotic.
I have a fairly young gyn. He is the one whom I told I wanted to have a second opinion when my mammo came back as a "check again in 6 months". I told him it made me uneasy. He said "I may be young but I have learned to trust my patient's instincts". He sent me off to a breast specialist and she found the cancer. God bless him for listening.

Mtngrl · 09-05-2011, 11:13 AM

Oh, my. What a story.

Just to weigh in on the other side, I noticed some fairly subtle changes in my breast last February. I saw a primary care provider in March and told her I was concerned. Neither she nor I could feel a lump, but she ordered a diagnostic mammogram. When that showed a mass and a lymph node that was "a little too fat" on the left side and calcifications on the right I was scheduled for biopsies three days later. Then when the CT scan showed suspicious (but small) lesions on my liver and lungs the liver was biopsied and cancer cells were found. All along the way, my health care people were very careful to get an accurate diagnosis. Of course I'm the "right" age for breast cancer, so that makes a difference. I'm not grateful to have breast cancer, but I am thankful that so much care and skill went into the staging process.

caroline96 · 09-05-2011, 01:23 PM

Hi Tricia,
This is the first time I post something here though I've been lurking here for months. Your story is very similar with mine in regards to normal bone scan. I hope my story will give you some directions for your next move.

My annual chest X-ray came back fuzzy in the left lung last year. So was my follow-up chest CT. Then, I had PET scan done in November 2010 and it showed a mass, multiple nodules in my left lung, and suspicious area in my sacrum. I took the bone scan and it came back normal (no bone involvements)! Then I took the biopsy of the mass in the lung and it confirmed my stage 4 status with mets to the lung (and bone?). The lung met was confirmed but the bone met landed on the gray area. Surprisingly, my onc was sure enough to rule out the bone met due to the normal bone scan. I was given only Xeloda. He also turned down my request to retest my HER2 status. I never looked back and moved on to MD Anderson.

My new oncologist retested my HER2 and redid all the diagnostic tests. The PET/CT (full body scan of combined PET and CT) showed a mass in the left lung, a dozen nodules, bone mets in sternum, rib, L1, and sacrum !!!!!!!!). HER2 retesting also confirmed that the tumor now is HER2+. My course of treatments has since changed dramatically with the addition of Herceptin and Zometa. My scan last June showed that the bones are clear! (although the tumor in the lung increased in size).

I can't help sharing what I have experienced with you in the hope that my story might help you reach a decision.

Love and blessings,
Caroline

ElaineM · 09-05-2011, 02:51 PM

Being assertive is a good thing. Second opinions are good. If you can't get a medical professional to agree to a Pet/Ct you can ask for an MRI of the area. Keep bringing up the subject until you get reliable and complete answers and help in resolving the pain.

TriciaV · 09-06-2011, 01:45 PM

Hello Ladies, Just wanted to say thank you ALL as I have been checking back all weekend reading and Rereading your replies as to what I should do and along with those I also found lots of info on Pet/ct vs bone scans and the accuracy. Anyway my Onc called me today with the results of the bone scan and this is what he told me.... He said the bone scan "appears" to be normal but those two sets of x-rays taken two months apart definitely show a spot on your rib, but I think it maybe some kind of trauma..... (grrrr) let's just watch the spot closely.....(another grrrrr) I said you know Dr. I just want a Pet scan!! I expected him to argue it out because that is what he does.... he said okay, I just don't want to go chasing it ( WHAT???) isn't that his job????? I think he some how believes if I don't have this palpable mass then let's not mess with it. Anyway I got my way for now, and my Pet scan is being scheduled and I will surely keep you all posted. Again I thank you all :-) if not for these boards I would have been lost this last few days. Hugs <3