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MsGebby- Pulmonary doctor appt?

rallendorfer
Posts: 245
Joined: May 2012

Mary, how did it go? Did he say anything about the nodules in your lungs? Let us know how you are doing, ok?

xoxoxo
Rebecca

MAJW
Posts: 2515
Joined: May 2009

How'd your appoint go? Update when you can....Hope all is well...

Hugs, Nancy

rallendorfer
Posts: 245
Joined: May 2012

Let us know when you can. Hope you are doing well!

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

The doc only said that the nodules are still there. He knows I am scheduled for a CT scan at Sloan Kettering in November. Everyone is waiting for those results. He said "we thought you had pneumonia". DUH! I knew it wasn't pneumonia. I took boat loads of steroids (actually needed them for my breathing) and antibiotics (didn't need those) and nothing cleared my lungs. When I said to the RO "Arimidex should be working since I've been on it for 6 months" he simply said "sometimes the drugs don't work". EEEEEEK

My MO contacted me via email about the hip xray. She said it was negative and said if I was still having pain she wanted to do an MRI. I wrote back saying "I want to see my ortho doc and that I understand why she wants the MRI but I don't want to go there". No response from her yet. I will call her on Monday. I think I really need to talk to her.

You know. .... I am just sick and tired of having test after test with no real answers. It just makes my brain hurt! I told my RO I feel like my feet are stuck in cement. I can't move! The fear has gripped me and I am trying desperately to move forward.

Sorry for griping but I really need to get this off my chest.

SO ... NO ANSWERS!!! NO ANSWERS!!! NO ANSWERS!!!

I guess no answers is better than getting the worse news ever. I don't know.

M

rallendorfer
Posts: 245
Joined: May 2012

There seem to be a lot of doctors looking at the tests, though. Everyone of them looks at it from his/her own expertise. I hope they can come to a common consensus. I know this must me nerve wracking for you, but it is coming along. Hang in there sister!

Sending peace,
Rebecca

New Flower
Posts: 3993
Joined: Aug 2009

Hugs

New Flower
Posts: 3993
Joined: Aug 2009

However as far as hip pain it is a very common ( of course MO could be surprised to hear about it) side effect of Amiridex. Hopefully MRI will give you an answer for your hip and peace of mind. Of course, who like test after test and life arrangements from Scan to Scan. Well we have to embrace this new reality and enjoy it!!!!
Hugs

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

When I said to the RO "Arimidex should be working since I've been on it for 6 months" he simply said "sometimes the drugs don't work". EEEEEEK

I started Tamoxifen as soon as chemotherapy was over in March, 1995. I remained on it until March 1999 when a good size tumor was found wrapped around the auxiliary vein in the armpit. For four years, I believed that Tamo was working while it wasn't as the tumor kept growing. If I didn't have a ct scan for another reason in April 2011, I would never had known that Femara was not working at that point.

Don't be lulled by the fact that you are taking Arimidex. Go for the MRI, not knowing is worse than knowing. You can deal with it, the same way you dealt with learning of your breast cancer. It could very well be some other hip problem. Cancer isn't the only one that has pain in the hip for a symptom.

Why are they making you wait until November for a ct scan of growing nodule? It seems to me that you have been playing the "waiting game" with these doctors ever so long. The next one you see, tell them you are not leaving their office until you know exactly what those nodules are. Perhaps a fine needle biopsy could be done in their office that day.

I really feel sorry for what you have been through, it's not right to make someone wait and wait and wait and never have an answer to what exactly are those lung nodules? Inflammation, cancer what, they are doctors they are suppose to give you an answer.

I don't mean to upset you Mary, I just believe that you should have had an answer by now.

Wishing the best outcome for you and an answer very, very soon.

Doris

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I know that not all drugs work for everyone. The RO doc did say that to me. As for the hip pain, I will be calling my MO tomorrow and see if I can talk to her for a bit. I really don't think it's cancer but she wants to know what IT IS. Not knowing is truly the hardest part. But, for me, every time I see a doctor, that doctor finds something new. I am tired of of THAT.

As for the nodules ... when I saw the TS in August, I had just been released from the hospital for breathing problems. He paid no mind to the xray. I got the feeling that xrays don't give a clear enough picture of what is in the chest (??) Anyway, I was on antibiotics and steroids at the time. I know that's the first defense in trying to figure out what is living in the lungs. Now that I know the nodules did not respond to this treatment, I have to wonder what the TS will be saying in November. My RO did say he wanted to touch base with the TS before the next scan. He tells me he knows the TS personally. I will be calling the RO tomorrow as well.

I am getting pain in chest and in my back. I don't say anything to the docs because everyone seems very laid back about these nodules. SO I am trying to just breath and believe they are something other than cancer. Although, in my heart, I know something is wrong. Having a new nodule that is over 1 cm is nerve wracking. Having a nodule grow from 7mm to over 1 cm in 2 months is even more nerve wracking. Should I be feeling sick? I don't know. The cough is under control now. That's a good thing.

time for me to go ...

xoxo

jamiegww's picture
jamiegww
Posts: 384
Joined: Dec 2009

I have been trying to keep my mouth shut because we are all different but I have been very confused about why they haven't at least done a lung biopsy. I had a CT scan in April which showed a nodule in my right lung that measured 7mm. I was told they would repeat the scan in three months. In June the lung nodule had increased to 13mm so a PET scan was ordered and a lung biopsy confirmed it was the same triple negative breast cancer I had back in 2009. Maybe they were more aggressive with diagnosing me because the PET scan showed several other areas of possible cancer? I do know that the lump above my original mastectomy site used to bother me and also caused my arm to ache but since starting chemo again, the lump has shrunk and the pain in my arm is gone. Chemo hasn't been easy this time around but I have evidence even without scans that it is working. Unfortunately I can't see what is going on with my lung so that is my point to you. I don't want to scare you because I know how scarey it can be, but I just don't understand why they aren't more concerned about the lung nodules. In all honesty, I haven't ever seen a pulmonary specialist so maybe that's the difference??? We all just want you to be okay!

HUGS!!!
Jamie

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

No pain where there was pain is a good sign. I always have a clue when something is working or is not working long before a scan tells me.

I have read all your post and am aware of the difficult time you have had this time.

I never saw the pulmonary specialist that the primary care doctor's PA had set up for me. Once the ct scan and PET scan stated what I had, I went directly to the Thoracic surgeon who did a VATS (video assisted thoracic surgery) on me to know if I was still ER positive and if it was still breast cancer. There was 8 years between my 2nd and 3rd recurrence.

Thinking of you and do hope all will be well for you soon.

Doris

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

I am sending hugs!

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Bless your heart!! It's ok to speak your mind. I get frustrated when I feel one of my sisters is having a difficult time and I keep quiet so as not to make her upset. I am sorry that you and possibly others have felt this kind of frustration over my care.

The TS said "I'm not concerned at this time". I believe he was thinking that the xray was showing an infection of sort. He knew I was being treated with antibiotics and steroids. He did say that I need to be followed closely because of my cancer diagnosis. This doctor, along with the others, have said that they don't know if this is mets or not. They all have told me how risky lung surgery is and are "hoping" to avoid putting me through it.

I am at a point where I don't care about the risk of surgery. I just want to know once and for all so I can move ... just move. I feel like my feet are planted in cement and I am stuck!

I will call both the RO and MO tomorrow. I want to ask the MO about this MRI she is recommending.

I have had some uncaring doctors (at least that's how I felt with them) in the past. So I fired them and have surrounded myself with some wonderful docs. Now I feel like pushing them away any time they start getting too close. I don't know why I do this. I really don't. I want answers and they want some answers too. So the phone calls tomorrow and most likely some more tests down the road.

I hate this! I hate cancer! I sometimes hate life. *sigh*

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

I am glad you're calling your doctors Mary. The only way we can fight something is to have the knowledge of what we are fighting. Your doctors now seem to really care and want to get to the bottom of your health problems. Let them help you and we will all keep praying for you. I hate cancer too!

Hugs, Lex

CypressCynthia's picture
CypressCynthia
Posts: 3956
Joined: Oct 2009

One other point about a lung biopsy: depending on the location, they can be very difficult to biopsy. When I had the rib pain and fractures, I was found to have a damaged lung with nodule on right. MO kept sending me to pulmonologists (I saw 3) and none of them wanted to biopsy lung. The last one I saw was a brilliant pulmonologist's pulmonologist. He explained that, although there probably was a small amount of breast cancer in my lungs, it was very difficult to get to and he might not obtain a good specimen. He insisted that someone needed to biopsy the ribs.

Lol, noone wanted to biopsy a diseased and fractured rib because of the risk of pneumothorax and the bone shattering. Finally found a surgeon who did it.

Keep asking around about surgeons. You may need a pulmonologist's pulmonologist (specialized expert) to do this. If the lesion is very distal (in the lower airways), you really need someone experienced.

Big hugs and prayers.

SIROD's picture
SIROD
Posts: 2132
Joined: Jun 2010

Dear Mary,

I am glad that you are calling about your hip tomorrow. There are many things that causes pain in hips other than cancer.

Your right about every time you see a doctor they find another reason to make you worry. I always have stated if you want to be well, stay far, far away from doctors :) The more doctors involved the more confusing it becomes. At one point I had 7 doctors who knew that I had frequent bouts of cellulitis. Had I hired a plumber he would have told me something was blocked. Finally the tumor sucked in two nerves and I had my answer. A ct scan found the tumor that caused 3 bouts of cellulitis.

There is no pain with lung metastasis unless a tumor is pressing on something else such as a nerve. Symptoms are usually a dry cough and shortness of breath. I had two negative x-rays the year before I had the recurrence. Two tests that showed I did have shortness of breath but it wasn't in the danger zone. I saw my Primary Care Doctor's PA in early 2008 and she ordered the ct scan, a visit to the pulmonary doctor and a lot of other things. However, I was in the middle of an acute strep infection of the tear duct which led to having a new tear duct put in. I promised that I would have the scan when the present situation was over and that is when they found the cancer widespread in both lungs, lining and a effusion in the pleura. My cancer is slow growing. I don't have a lot of faith in x-rays for that reason, it should have showed something or was the radiologist having a busy day and missed.

I certainly would mention the pain in the back to your RO. I knew the ribs were involved long before a ct scan mentioned them. In fact the first time they returned, it wasn't mentioned until the 2nd scan which made my oncologist a little angry. The statement was "it is no worse than the previous scan" which didn't mention the ribs at all.

Please keep us informed, we do really care about you.

Best,

Doris

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Mary, did you call or go see your doctor? What did he say?

Hugs, Leeza

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

No ... I haven't called anyone. I do have an appointment with my orthopedic doc coming up October 11. I am sure I can wait this amount of time. The pain comes and goes. I am feeling some in my left hip now. I honestly don't think it's mets. So I am taking the high road and will see what this doctor thinks is going on.

In the meantime, I am spending some much needed time with my youngest daughter. We've been off and running for 4 days now and it is just so much fun.

My dad turns 80 tomorrow, so my daughter and I spent ALL day cooking and baking for him. the family is throwing a huge party for Pop Pop. We are planning on a trip to a farm for apple and pumpkin picking next week.

I had to take her to a walk in clinic today ... she developed a red rash-like mark next to her eye that seemed to spread over night. She was told she has poison ivy. YUCK! So that might slow us down a bit. She has more on her back and arms too. Gotta keep an eye on this. Other than that, we are having "mom daughter time" and I couldn't be happier.

When she returns to work, I will find time to decide if I want to deal with this hip pain before the orthopedic visit. I just don't want to worry about it. It's probably nothing. Can you say "Mary doesn't want to deal with this stuff anymore". Cuz that's exactly where my state of mind is at.

I still have to deal with the lung nodules and that oh so important next ct scan is right after Thanksgiving.

Thank you so much for taking the time to check in with me.

NOW it's my turn...How are you doing? I haven't seen you on the site for a while (might be cuz I'm not on the site that much lately)

Peace Love and Chocolate!

Mary

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

What a great time you're having with your daughter Mary. I am sorry she got poison ivy. yuck is right!

Lots of hugs,

Kylez

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