advice on lung mets please

[fullofbeans]

I have the following symptoms:
-shorteness of breath for few days now
-Spitting yellow stuff for around 2.5 weeks
-Dry Cough which seems to have gotten better
-Broken voice which comes and goes
-I can feel my sternum
-No fever

At first I did not worry thought it was a bronchitis type of thing because I did not know that coughing ect was a potential symptoms of mets. But after I started to get breath shortness I started to look up on net and the above symptoms are really not a good sign and I am now officially completely freaked out .

The only thing that keep me sane is that my broken voice and cough seems to have either gotten better or varied and I would think that it is a good sign (it is, isn't it??????). But the shortness of breath is now making me really wonder.

I called my hospital today and the doc said that I should go and see my GP?????????????, got angry with her, but she said they were too busy at the mo and that I should take a course of antibiotic first to see if it resolves itself. So went to see the GP and he said I should get imaging (D'ha..) because there is no infection.

As anyone had a broken voice with lung mets and was it getting worse or could it come and go and same question about cough was is getting worse and worse or varying?

[AlaskaAngel]

Hello FOB,

Yes, there is always the chance of mets, but from your description it is much more likely this is bronchitis or the like. I can't remember if you have markers done and have a baseline for that or not? Your initial thinking on it is clear thinking -- that with the hoarse voice (and your not being a smoker as I recall), doing the antibiotic should provide even clearer info for you fairly quickly. However, I am glad you are very quick to question whether any symptoms are mets or not.

As always,

A.A.

[madubois63]

I agree with Alaska Angel. It sounds more like an upper respiratory infection or bronchitis to me. But, we are not normal anymore and ALL symptoms should be checked out for a CONCLUSIVE answer!!! If your onc does not want the responsibility, it may be time to have a pow wow or find a new onc!! My onc has NEVER sent me to a PC for anything! He orders or does every test himself.

My first relapse (4 years ago) with lung mets (paired with liver mets) was found by a walk-in PC (sort of). I had been seeing my onc for regular follow-ups and my tumor markers never changed. I went to the walk-in because I had a double ear infection and a persistent cough. The doc suggested I MIGHT have had a relapse, and I looked at her like she had 6 heads. She ordered an x-ray and treated it as if it were bronchial. I was exhausted by this point and the heavy breathing was taking it's toll. A walk to the bathroom was like climbing a mountain. I ended up in the ER before any further tests could be done. The pain was unbearable. The ER admitted me for a week, my onc took over and I met my pulmonary doctor that week. He drained my lung (2 liters of fluid). The pathology came back inconclusive, but the other tests showed several spots on my liver and lungs. 3 weeks later, I was back in the hospital for scheduled VAT (video assisted biopsy) thoracentesis (draining the lung) and pleuradesis (sealing the lung with talc). That was the beginning of my second bout with the beast. And yes, this is the same procedure I just had last month.

I repeat, it doesn't sound like mets, but PLEASE get this checked out. After having bc once, you can never be too careful.

[tousled1]

I agree with the others that it sounds like a bronchial infection. I have lung mets and when I was diagnosed I had no symptoms other than a little shotness of breath. Talk to you doctor about it and if it would make you feel better insist on a CT scan.

[fullofbeans]

Thank you yes I know need to get it checked, but because they had a fire at the hospital they are busy. but she was awful with me on the phone, she said that anyway even if it was mets until it actually impaired my life quality they would not treat it! because that is what they do for stage 4 BC...I feel so alone fighting this.

The person I talked to is a registrar not my oncologist (whom I have not seen for a year now impossible to see). The registars are trainnees and they change every 6 months so there are no chances to create a respect relationship with them, and you just get patronised.

Anyhow going back to my GP tomorrow and she will phone in the hospital asking them for a CT scan all is very upsetting to have to beg. I have not had a scan for almost 6 months anyway but hey they do not want to have monitoring because they think it is useless..

[AlaskaAngel]

FOB,

I'd feel the same way. In the meantime, try to think of ways to reduce inflammation as much as possible. You don't have a fever, but the stress isn't helping. It is easy for me to say, I know, but there is logic in it. I'm wanting you to live at least to be as old and cranky as I am and that probably means years of upper respiratory tract infections and other customary infections to deal with over the decades while waiting for treatment, and it is worse with the recent fire there slowing things down. It IS especially upsetting once you have been diagnosed stage IV, and I'm sorry the system is not more helpful.

Hugs,

A.A.

[madubois63]

...but she was awful with me on the phone...

Please complain about this!!! It is her job to be nice to you...
...she said that anyway even if it was mets until it actually impaired my life quality they would not treat it! because that is what they do for stage 4 BC...

Then she is an IDIOT, and you need a new onc right away!!!! If you wait until your quality of life is impaired, it could be too late. Uh, what ever happened to catching it early, treating it before it gets out of hand??? Please take the stupid stick and slam this person really hard for me. I am sooooo very pissed off about your conversation with this jerk. The registrar should not be doling out medical advise over the phone or at all, and by telling you that you can't get treatment until your at deaths door, that is exactly what she did. As a paralegal, I can be prosecuted for doling out legal advise, so I don't do it!!! This person is impersonating a doctor. Please speak to the office manager about this. If it is that impossible to see your onc, you REALLY need to find a new onc that will be interested in your health and well being. Argh...........

[Carolyns]

FOB -

I am sorry that you have to endure this BS. Mean people suck all of the time but it hurts more in times of need.

I am glad that you are getting your scans soon. 6 months seems like a long time to wait as stage IV. I hope that these symptoms allow you to get your scans and then that the scans show NED!

I am praying for you.

Carolyn

[Mary Jo]

Absolutely ditto to what madubois said. What horrible treatment. I can't even imagine my medical team treating me this way. It's a no wonder you feel alone. I'm so sorry for you that you have to go through this and then on top of all that you aren't feeling well.

Please, please, please COMPLAIN and LOUDLY! There is ABSOLUTELY no excuse for such treatment to ANYONE.

Sending a gentle hug to you,

Mary Jo

[tdonnelly]

Hi,
I too have had a bad cough for over a month now. At one point it was so bad it caused me to loose my voice. I was at the end of Radiation and thought maybe that was the cause. I did have a serious upper respiratory infection and coughed blood twice; I was given Z Pack antibiotics. It seemed to be helping but several days ago I started again this time with a sore throat; still coughing; worse cough I have ever experienced. My xray came back normal; I dont know what to think. I too worry about possible lung mets. I did read if lung mets are in their earliest stages symptoms will appear, but not large enough to show on an xray. I guess I just have to wait and see. Difficult I know. Sick as I have been the onc still gives me Herceptin treatments. I dont know if that is a good idea or not. Hope you are feeling better soon; and will pray we have good results. This disease certainly tests our very limits. Take Care.
Tamara
Invasive Ductal Carcinoma 11/2006

[tousled1]

Also don't forget that for lung mets to show up on a PET/CT scan they have to be larger than to show up on a CT scan. My lung mets were found by a CT scan and I asked my oncologist about doing a PET/CT and her reply was that my mets were too small to show up on a PET/CT. I have mets in both lungs - several in each lung but none measuring larger than 1cm.

AS for her saying "even if it was mets until it actually impaired my life quality they would not treat it!" that is complete BS! I would have to find myself another oncologist. With any type of mets it is best to find it early and treat it as you have a better chance of getting back to NED.

Best of luck to you.

[fullofbeans]

Thank you all so much for being pissed off too, for some reasons it helps (I guess nice to be understood)

I sooo agree with finding things early for a chance to get NED again. By the way I am a real phenomena here because they simply do not have stage 4 NED in this country..did you know that I instigated the CT scan that revealed my liver mets in 2006. They had planned 6 FEC and no scan and send me home until symptoms would have showed up, the FEC was later shown not to work on my tumours.. If I had followed their advice think how much worse off I would have been...

I am afraid that changing oncologist may not help because it is the same everywhere in the UK. I had to raise money for my treatment on liver. They are reactive not proactive, in the long run it does not make any sense even financially.

Thanks again for all the good words of support, prayers and yes I have every intention to become a cranky old woman ;-)

[BonnieR]

I agree that the registrar needs to be reported. How dare she talk to you like that.

[Sueinuk]

I am in the UK too and am infuriated by the treatment you've received at the hands of that reg. At my hospital I am treated by my onc and his registrars but none of the latter would even think of changing my treatment or giving out advice unless they had spoken with the man himself.

I don't have secondaries (as far as I know) but am being treated for a local recurrence and am on Herceptin and Capcitebine. I would be heartbroken if my onc's registrar spoke to me like yours has you. As other posters have said, report her. She needs to take lessons in bedside manners. I am so angry.

love
Sue

[fullofbeans]

My GP left 3 messages and the hospital/clinic did not return her call..

the secondarie nurse specialist will return from her holiday on Monday so I will speak to/see her. However the thing is that it is official policy to not scan until you have symptoms and it is official belief that it does not matter whether you catch mets early or not, so it is not just her, it is the reactive system. Actually the oncologist is actually reasonable if you ask for a scan during appointment (because of symptoms) with registar (who shoots off ask him then comes backs usually with yes), but cannot get appointment for weeks now. However they would not agree to a monitoring program. It is exhausting to always have to ask, exhausting to feel that you have to beg, exhausting knowing that they would nedically treat their relatives differently and that you are just a number.

Sue did you receive a taxane the first time you were dx? ( I am assuming that you are not in a private hospital and that you are located in England) Because the use of taxane are not allowed here for early BC. Have you been scanned?

Again thank you for all your support

[lilyecuadorian]

full of bean there is anyways how you can be a actress and cry with some pain or cough too much every second ...and the pain pain pain until they order something?????that is what they wanted give to them .....maybe I don't understand enough but over here sometime we need to invent some effects ...in order to get check ??? wish you good luck w/that system

[Sueinuk]

Hi again, Fullofbeans.

I did receive Taxotere after my mastectomy, yes. I had FEC prior to my op to shrink the tumour. When I got a recurrence in my scar (plus a new primary in my other breast which disappeared) I was put on Herceptin and Capcitabine. My recurrence has now gone and my onc says he will stop the Capcitabine soon.

Whereabouts are you in the UK? I am in Derbyshire. Your treatment centre sounds awful. You should have a scan without delay, if only to ease your mind. I haven't had a scan, apart from chest X Ray which was clear, but was told that if I was worried about anything I would get scanned. My friend was having bone pain and asked for a scan which she was given within two weeks.

I feel so sad seeing you struggle like this against those in authority. Can you not change hospitals?

Please let me know how you get on.

love
Sue

[Sherryg683]

I agree with the others, you do not wait till your quality of life is affected to treat cancer. I was diagnosed with 2 lung mets and had no symptoms was actually very healthy otherwise. Find someone who will work with you...good luck... Get some scans done and find out for sure..sherryg

[fullofbeans]

Ok went to hospital yesterday and they said I would be sent a letter to tell me when is the appointment. So i phoned the CT dept it was planned for the 30th but I managed to get it earlier i.e. on the 22st thanks to efficient CT secretary who got me a cancellation...so getting there at the end...

I spoke to the secondary nurse and she will arrange for me to be a patient of one of my onco researcher which means that I will not have to see a new registrar every 6 months since I was dealing with my cancer differently from other people (to whom for eg they do not advise routine scanning), so I am very grateful to them for coming up with that solution.

Sue glad you got taxotere, I initially was denied it when I was still early BC because I had a node negative one. NICE (equivallent of FDA) has not approved it for early node neg BC (even if you are Her2!! despite the research showing benefits). Sue my hospital is not worse than any another in the UK (actually nurses are nice, organised & it is clean). It is fine if in the UK: you do not want to be scanned routinely as a stage 3 or 4 and wait until you have symptoms, not automatically be scanned at dx, and, not know about taxane if you are node negative Her2+.. if you become stage 4 in the uk they will not treat your liver with resection when possible nor do any operation of any kind. There is a variation of 14% (that is 4000 woman a year) between 10 years survival rate in france and the UK (Eurocare survey)..it is freecare in France too (and the rest on western EU), the UK comes 15 in survival rates despite having the one of the highest GDP..sorry but it is not just my hospital...the uk is the last country to approve drugs, woman had to take the gvt to court to have herceptin which has only available since Sep 2006..I could go on..

[suzan w]

Hey Full of Beans!!! Glad to hear that you are at last getting somewhere with all of this. Sounds like you need to move to Seattle...then we can have coffee more often!!!