Mets to lung
Comments
-
I just read that lung mets has poorer survival than other mets, It was on a NIH study, is that true? I cannot get a straight answer from my current ONC. The ONC that DX me because of the newer treatments said I had decades, either he was not being truthful or everything I read even recent studies are not seeing the whole picture? I was 12 years out and highly ER+. Why are there not many posts regarding lung area mets? I found mine with TM’s rising and not any kind of symptoms, still feel good other than symptoms from the Ibrance and Falsodex. Any one out there who is living well with Lung area mets?
0 -
Betty- yay only 1 tumor and that's wonderful they took out the other area!
In the US it is considered a chest tube. OMG about the pain med and they didn't make sure you would be covered after!! I had more narcotics while my chest tube was in then after any of my other surgeries!! They tried to stop the suction on my tube once and after about 30 seconds I had really sharp pain and I couldn't catch my breath. The nurses were nice but I got the, "calm down and breath slowly", lol to that I firmly said while taking short, shallow breaths, that I couldn't catch my breath or breath deep because of sharp, strong pain. They put the suction back on and the breathing issues resolved though the pain was still excruciating! They stopped the suction about 6 hrs later and it was totally good with no issues.
I was in the hospital for 2 1/2 days after surgery. I was off of the narcotics before I left the hospital, though had them for at home if I needed them. Once home, my biggest issues were if I did to much, even going for a 2 mile walk, I would have serious pain to my left lower rib area. Thinking back I think it was due to my diaphragm shifting up into the space where my lower lobe was. After 2 weeks that pain was pretty much gone. Doing the incentive spirometer smarted for a couple weeks also. I feel I can breath better then prior to surgery lol.
Wow that was a quick turn around they wanted for you!! Especially given little to nothing for pain after surgery!!!
Im glad your recovery is going well!! Ongoing thoughts and prayers for a good, minimal issue recovery!!💗
I hope everyone is having a great week and keep up the fight to kick cancer's a$$!!🥊🥊
~Katie💗
0 -
iPenelope - I did wonder why the word ‘drain’ wasn’t used much on here. The chest tube/drain was piercing and so awful. I also had the nurse gently asking me to calm down. The only things that calmed me down were strong painkillers, oxygen and sleep.
It’s now Day 6 and I’ve tried not to take painkillers today but I’m so sore. Feels like a stab in my shoulder and heart. I’m also very tired all the time, were you like this?
Imagine - I hope you’re OK? I’m also researching a lot, it’s hard not to with this diagnosis. I can tell you I know someone who was diagnosed with a recurrence in 2013 with 3 lung nodules. She had a VATS wedge resection of one nodule. She had 6 rounds of chemo then put on Herceptin (even though her first diagnosis was TN, her 2nd diagnosis with lung nodules were ER/PR- and only borderline HER2). She has been NED for almost 7 years.
And another lady who I know had pleural effusion straight after finishing chemo. So this was 2014. I think she went straight onto hormonals and is also doing well.
I had lymph node recurrence after ‘node negative’ diagnosis. Which meant chemo and tamoxifen didn’t kill off stray cells. I do know that chemo shrunk my 3cm tumour in half. I was then put in Letrazole after Oopharectomy and did well for 3-4 years. You seem to be a better responder to hormonal treatment. This is why I pushed for surgery.
0 -
Betty- for the first week after surgery I felt very drained. I didn't really have the stabbing pain where you did, mine was front and side lower rib. Yeah it was definitely not a fun recovery... then again are any of them. I'm wondering if your pain is in correlation to where your tumor and other area were. I did have some increased pain at times in my upper left collar bone area and that was where they did the wedge resection of my upper lobe. Hopefully the pain will start to lessen quickly otherwise maybe give your surgeon a call. No increased redness or heat to side or surgical incision?? Did they do large incision or small? VAT or traditional surgery? Mine was VAT.
Karen- that does not sound promising for us lung met ladies!! Like Betty I have not found a lot of info online about lung met, treatment and survival, well other then things pretty specific to straight lung cancer or pretty old. I'm surprised given your initial tumor was ER and PR +you went put on Tamoxifen or another anti-hormone medication!! Yay about no issues related to the lung area but sorry the medications are causing issues!!
Have a great, safe day and keep up the fight to kick cancer's butt!!🥊🥊
~Katie💗
0 -
Hi Imagine
Predicting longevity can be unsettling and it is difficlt to determine
Everyone is differnt
Many factors at play .
Length of time since original diagnosis and Hormone positive treatments appear to have a better outcome
Her2+ status and hormone negative can reduce time to progression
Greater tumor burden
chemo side effects and other health isssues can affect health longevity status
Stable Response to therapy and time duration that a person remains stable is a possible indicator for longevity
So for you it is great that first report was positive for longevity ...dont go by the Nhs report
For me mine is long time...when someone says how long....my answer unknown!
as im hormone pos in my fifth year have low tumour burden...no breathing issues min side effects
All the best with treatments
Bright in hope
0 -
iPenelope
I also had VATS wedge resection. I have 3 incisions, look bigger than they are due to glueon 2 of them and stitches on the other. How many incisions did you have? And yes the pain is mainly where the tumour was. I took a walk today (Day 6 post op) and it was hard towards the end, I found my breathing getting heavy and needed to get back. But I'm sure it will be better each day. No redness near the incisions and no temperature.
Bright55 you are so right. If you look at most stats they use the median, not the mean (average). So unless we see the actual numbers stretched out in a line, these stats have no relevance to us. They are also dated as they can only go by the last bulk of years with older treatments. When you think we now use 3rd generation chemo and look at the 'breakthrough' section on treatments being used, these aren't included in old stats.
Look after yourselves ladies
0 -
Betty- like you I had 3 incisions with 1 of them being a little larger then the others. I had some redness to the incision that the tube was in. Thet removed the sutures on day 6 and it dehised, opened a little, because it was to soon. The area scabbed up and finally healed about 2 weeks ago which was about 2 months pretty surgery.
Yay for the walk!! It does get better the farther out from surgery you get!! It took me a couple weeks to get back to normal for exercising. The more I walked the better I felt and the easier breathing was. Now my breathing I think is better then before surgery unless it's humid and then my chest gets a little tight.
I hope everyone is having a great day!! Keep up the fight to kick cancer's butt!!!🥊🥊
~Katie💗
0 -
hi all
I am posting my upcoming experience here to see if others have endured anything similar.
I will be getting SBRT (cyberknife) to a single 1cm lung lesion which lit up on my last PET. I have liver tumors that have been treated locally with y-90 and bland embolization and they did not light up. everything but the lung lesion finally shrunk on my current systemic regimen of Afinitor/Faslodex/sandostatin.
So even though I had multiple small lesions in my lung and liver the radiation oncologist considered me ogliometastatic and agreed to SBRT with the caveat that there is no data on it improving overall survival rate.
Pros-
1. since everything else seems to be having a therapeutic response, hitting the stubborn lung met may help me stay on my current meds longer
2. Whack-a-mole theory- use the poison(systemic) and whack the stubborn ones that peek out (less invasive local treatment)
3. Hoping for some abscopal affect to other lesions
4. Mental benefits that I am actively/aggressively treating my cancer .
5. Very few side effects and I can stay on systemic meds with a small break the week of treatment ( 4 sessions )
I will post again and follow this thread.
De0 -
Hi De,
I think we think alike! I would definitely go for the Cyberknife if that’s what you want to do. I pushed for surgery on my single lung met, even though I was told it’s not usual practice to do so.
I like the whack-a-mole theory. Whatever you decide to do, I hope your team respect your wishes and hopefully you will go back on the same treatment.
My Oncologist doesn’t know what to do with me in terms of treatment now that I had mine surgically removed. I only had one cycle of Ibrance and 2 loading doses of Faslodex but stopped to have surgery and now waiting for the new plan.
Hope all goes well
0 -
De- I second what Betty said! If they are able to get that out it gives you one less area to worry about!! If you want it out go for it wth gusto, don't let the doctors poopoo it!
I hope you ladies are staying safe while you continue to fight this fight!!🥊🥊
~Katie💗
0 -
I did SBRT to a single lung met. Itwas a quick and painless treatment requiring only five daily visits. My theory was any lessening of a tumor burden was a positive step. Also, this type of radiation can be done numerous times to different tumors in the lung should another develop. I have been tumor free since the treatment last July.
0 -
Katie,
I have no experience with lung mets, but wanted to mention that it is great that you will be having immunotherapy- your history indicates that you were originally ER-positive and then the cancer changed to ER-negative. It was recently reported that in those cases, the cancer seems to be far more sensitive to immunotherapy. The numbers they cited were like 18% of ER-negative respond, and only 5% or ER-positive respond, but the so-called "converters" response rates were like 50%, so much higher. Good luck!!
0 -
Thanks
Jcslibrarian that is great results! I hope mine is too!
Dee
0 -
I recently completed SBRT as well. 5 quick sessions with no side effects at all. I had multiple small lung lesions. After a year on Kisqali/Letrozole/Zoladex combo, I was NEAD. 4 months later scan showed one small lesion growing. Doctor described me as oligoprogressive and we decided that SBRT and then staying the course with hormonal treatment made the most sense for me. My radiation oncologist told me the radiation is equivalent to cutting the lesion out. Will scan again in August which will hopefully show if the procedure worked. Will keep up here to see how everyone else is doing.
0 -
Cure-ious,
Love the name!! Thank you for that information!! My onc tested my tumors for a marker that my med works best with. For use you had to be at least 1% and my tumors were 5%. I'm seriously hoping the current treatment has a hitch success rate!! PET scan July 9th...impatiently waiting to hear results!!
SBRT was not something that was offered to me. Not sure if the deceased time frame between initial dx and metastasis reason why.
I hope everyone is having a good week!!
Keep up the fight to kick cancer's butt!!🥊🥊
~Katie💗
0 -
missmonty
Thanks for the report. SBRT has its benefits!
Dee
0 -
Hi all,
I’m happy to report SBRT is over. I had to fight/insist my MO to get referred.
I justsaw this article posted in another thread here.
I am going to make sure my MO sees this article about the benefits of ablative radiation to metastatic tumors. I feel like the MO “liquid” doctors need to work closer with the RO “x-ray” doctors and the SO “knife” doctors. They each have something to offer!Having a little fatigue but happy to be past this stage. It’s the first time I got to ring a bell.
Dee
0 -
Dee- good for you for pushing for what you wanted!!! I swear some doctors have lost their compassion when it comes to stage 4 cancer patients!! Yes I'm Stage 4 but I'm not ready to roll over and give up like they seem to think you should! Sorry...i had to vent!!
I hope your recovery goes quickly and your results are what you wanted!!
~Katie💗
0 -
Hi all,
I have been diagnosed with stage 3B HER2+, it was not on my breast but the lymph nodes under my armpit. Had the lymph node removed and then did 6 cycles of Herceptin & Perjeta. At the end of the 6 cycles, the onc saw some spots at the lungs area and concluded that the chemo did not work. Following that, I had sought a second opinion and had a new onco who started me on kadcyla for almost 2 years. The spots were still there but it was not a concern.Things were good and I was back doing my morning runs, cycling and some other sports events.
Late last year, my onco suggested that I should do a radiotherapy to the lungs where the spots are, just to get rid of it. Radiotheraphy done and I was already feeling breathlessness due to the scar from the radiation. However, the breathlessness didnt go away and now I am coughing.... things got worst as COVID-19 happened and I was not able to get a proper CT scan until last week.Last week, after the CT Scan, I was called into the Onco's room and she had said that the spots are still there and there are few additions, I am told to stop kadcyla as it no longer works. The onco said that a good thing from the scan showed that the spots are only at the lymph nodes around the lungs and not in the organ itself but it seems to be spreading fast. I was then sent to the ops room and they did a biospy, results will be out in 2 weeks.
I have reduced my activities as I find myself breathless, i coughed even while laughing at simple jokes.
At the moment, I am very worried about what is to come next. But, I am still positive that there is still a possible outlook that it is treatable and praying that the next treatment protocol will not be aggressive.
If anyone has similar experience to mine, I do hope you can share with me. I would like to get some thoughts and insights that can make me consider options if they are presented to me.
Thank you in advance to all.
Stay strong and sending love to everyone.0 -
miza73
I'm sorry you are struggling with those symptoms. I hope your biopsy can shed some light on your situation and give you direction for treatments. Are they doing a genomic/molecular testing to check for mutations and PDL1 status?
What kind of radiation did you have to the lungs? I had SBRT which is a very focused beam to just hit the spot not the whole area. I have had just a few bouts of shortness of breath with exertion but no coughing.
Have they checked you for radiation pneumonitis? Could you have done radiation scarring causing those symptoms?
I hope you get the help you need and start feeling better too.
Dee
0 -
Hi Dee
Thank you so much for your sharing.
Yes, I'm doing the genomic/molecular and PDL1, hopefully it would be able to give us more clarity in the next steps. I have not checked for radiation pneumonitis, thanks for the advise. I will look into this.
Keeping good and positive vibes.
Love and blessings to you.
0 -
Hi Miza, sorry the lung issues are causing symptoms and affecting quality of life. I hope you get your biopsy results soon and a treatment plan that is effective and manageable.
Is your bloodwork ok? My lung met made me cough but my breathlessness was due to low Hgb.
0 -
Hi Moth,
Thank you.
The bloodworks are currently in check as well along with the biopsy. will be informed of the results together.
0 -
Hi all,
Hope you are all well and keeping safe.
Just wanting to share an update.
I am back in the hospital but I have not received the biopsy results.
From last two weeks, i have improved quite a bit where my breathlessness is manageable and i do not get the violent coughs i had. I hope things will improve from here.
The onco said it may take another week or two since its being sent abroad (i am in Malaysia).
While waiting, i have been administered Gemsar and Carbo platin.
Keeping positive and hoping for the best for myself and everyone. Sending all my love to everyone.. Take care.
0 -
Miza, I hope gemzar and carboplatin start working quickly! How are you tolerating the treatment?
0 -
Hi,
Is there a reason why you are not on ibrance? Ibrance is very effective on er+ breast cancer.
0 -
miza73
Glad you are getting better. Let us know your biopsyresults and how your treatment is going. That Chemo combo Is in my arsenal.
Dee
0 -
Hi Moth,
Yes, hoping these combo will start working quickly.
As at the moment, I am not experiencing any side effects as at the moment. Hoping it stays that way.
Hi Adymaria,
I am currently waiting for the biopsy results, so these current combo is just a temporary "maintenance" until a definitive result is out to work out the exact treatment. But I will look into ibrance, i have not heard of it being mentioned by the onco as yet.Hi Dee,
Yes, I will definitely update the details. Hoping to get some happy news when it does.
Thank you all. Take care, lotsa love.0 -
Hi all,
Hope everyone is doing well. Just to share an update, as I had stated that I would.
The biopsy result is out. It had been shared by the onco but we will discuss the details next week.
The test done was to look for any genetic alteration within the tumour that may be the driving factor for its growth as well as resistance to prior therapies.
In essence any positive finding can be used to guide for further treatment options.
The test conducted found erb2 ( HER2) mutation ( present before) and another mutation - P53.
P53 is a tumour suppressor gene. It is supposed to act like a gatekeeper; prevent cancers from happening. So if it is mutated like in my case, tumours are 'allowed' to happen.
I was told that unfortunately there are no specific treatment or so called anti -P53 drug so the option is anti HER2 drugs and chemo +/- radiation.
So, I am not sure what will the discussion be on the next meet up with the onco.
Having gone through 3 rounds of chemo, I do not feel like going through another session because I am unsure if my body will be able to endure further. I am just hoping that I could find something to carry on with daily activities and retain the quality of life.
That's all for me at the moment.
Love you all.
0 -
Hi Miza, her2+ is good - gives you more treatment options. What chemo were you on before? I'm in weekly taxol right now and honestly it's been pretty tolerable. I did 10,000 steps according to my fitbit yesterday and the day before so I'm active and busy and feeling good right now.
Hope you can find a good treatment.
Oh & I'd keep an eye for the clinical trials - maybe something for p53 is out there
Hugs0
