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Hello

My sister just recently diagnosed.  Going for second opinion to University of Pennsylvania next Monday.   Oncologist has chemo scheduled already for next Thursday.  Says c cancer not a match for newer drugs.A very frightening time.   Had been trying. Since January to get A diagnosis.   Finally after surgery to remove tumor since all biopsies came back inconclusive, we know what we are dealing with.   Unfortunately the cancer is In the pleural fluid...no other sites at this time.

I am so scared.  Not of death, but of suffering and sickness.   Right now she looks great, and only pain from surgery recovery.

Every thing I read about chemo is a nightmare... Are there any natural alternatives?  

 

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Hi, Nora, and welcome.

I'm not completely sure I follow--you said the biopsies came back "inconclusive" but then said "we know what we are dealing with."  If they were inconclusive, how is it you (or the doctor) know what you're dealing with?  Has she had a PET/CT scan to check for metastasis (spread)?  How large is the tumor? 

I think it's good that you're getting a second opinion (and I've had non-cancer treatments at U. Penn. and their medical facilities are top-notch).  Even if she needs chemo, everyone responds differently.  Many people don't have dramatic/debilitating side effects, or the effects are only temporary.  There aren't any "natural" treatments that have been proved to be effective.  I always think of Steve Jobs, who insisted on "treating" his cancer with natural remedies.  It killed him.  Apparently there would have been a good shot at a cure if he had accepted conventional treatment.  Many people add years or decades to their lives by receiving treatment.  Many of the folks here can attest to that.

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Hi Lexi.   Thanks so much for responding.

 

here is a s synopsis

O ur 88 year old mother died unexpectedly 10/29/17

62 year old sister in November gets flu- hospitalized pneumonia and sepsis

chest xray done. Small nodule seen in left lung near site of scarring from lumpectomy 24 years prior.   Sister had breast cancer treated with removal and radiation only 24 years ago.

needle biopsy done in January 2018.   Came back inconclusive.  All done at geisinger hospital.  Scranton pa.   Requested that nodule be surgically removed, told not protocal.  Petscan done. No signs anywhere else, but this spot.   Sister and husband stressed due to death of both mother's, and his brot her in2017.    Pulmonologist agrees they can go on vacation to florid a.   Physically sister is fine.

Returns March2018.   Chest xray done.  Fluid in pleural around lung.

Removed by pulmonologist.   Tested.   Our of all fluid only one cancer cell

Found.   A breast cancer cell.   Breast mri ordered.   Wait another week for results. Nothing found in breast.

More fluid build up.   

Meet with surgeon, oncologist, and pulmonologist.   Tell them remove nodule!  Surgeon says he will remove fluid and get better samples.

Surgery done. Tumor/node has grown.   Attached to chest wall.   Approx. 1 inch x 2 inches.    Studding seen in tumor. Dr. Comes out tells us, stage 4 cancer.... approx. 1 year to live.   We are stunned and numb.

Results come back  lung adenocarcinoma stage IV.

 

Seek second opinion through friends at Sloane.   Sloane Kettering wil! Do nothing without seeing all records.   Will not accept insurance.   They pay $1,800 per month for health insurance.   Woman at Sloane recommend reach out to University of Pa.  Same distance.   

University pulled up all records instantly.   Appointment for this Monday May 21st.

Sister wants to get treatment in Scranton near home.   Has a lot of faith in pulmonologist.   Oncologist met this week.   Tumor not match for immunotherapy.   Wants chemo to start Thursday May 24th. Port to be done Wednesday 23rd.

Sister still does not appear sick.   She is very anxious though.   Had discussed if she only has year to live, should she do chemo?

Brain mri done this week.  Results not back, but surgeon and oncologist looked at it, and said they are nothing.

The stage IV has us worried.   Because of in pleural fluid , in no other organs.   Smoked over 40 years.   Quit 3 years ago at first signs of copd.

The internet is good to some extent, but can find conflicting information.

As her sister, I want only the best for her...

 

 

 

 

 

 

 

 

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Hi Nora and welcome!  Thanks for the detail you provided. I'm glad to hear your sister is getting a second opinion. Prior to my lung cancer (which was adenocarcinoma stage 1a), I had a rare and aggressive stage 3 gynecologic  cancer with a "dismal" prognosis. I got a second opinion midway into my treatment and I'm really glad I did. My original oncologist agreed to follow the recommendation of the second opinion doctor (who was at Oregon Health Sciences University). Today, 7 years later, I have no evidence of disease (NED) on that cancer. Same on my lung cancer.

I'm suspicious of most lung cancer life expectancy predictions, for a couple of reasons. Here's a link to a video about why life expectancy statistics  are really not applicable to individuals. Second, and especially for lung cancer, new treatments are being approved all the time and there are also clinical trials that are life-saving. I think there were 17 new lung cancer treatments approved in the last 3 years. Most stats, on which predictions are based, are years old and don't account for new treatments. Probably a university affiliated cancer center will know what's new and usable by you sister.

As to chemo, I didn't need it for my lung cancer, but did have it for my gyn cancer. I had 6 weeks of concurrent weeklyy chemo (cisplatin)  and  5 times a week radiation , followed by 3 rounds of carboplatin and taxoterre (similar to taxol). The concurrent stuff chemo and radiation was pretty unpleasant, mainly due, I think to radiation of my lower digestive system--my problems were largely gastro-intestinal. With the 3 rounds of chemo alone, I had problems with neutropenia (low white cells that causes risk of life-threatening infection) and  severe anemia at the end of treatment. So it wasn't pleasant, but it was doable. There were treatments for side effects.  I was well enough to drive myself to all my appointments.  And, I'm alive today and have good quality of life. So it was worth it and I'd do it over if I  needed to. 

There are some alternatives that may be helpful in addition to conventional treatment and I have used somo of them including accupuncture and supplements, but nothing that can replace conventional treatmet .

Best of everything to your sister ant to you. Let us know what questions you have and how we can support you.

Bridget O                                                                                                                                                                                                                                                                                                                             

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Thank you so much Bridget.   We spent the day yesterday together.   She has pain from her surgery two weeks ago.   wedge resection upper love 2.5 cm single tumor.  Histological Grade G2. 

We are anxiously awaiting second opinion this Monday.

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Hi Nora,  I assume your sister has had biomarker testing (also called tumor genetics and molecular testing). If so, do you know what her results were? If not, you should ask the second opinion doctor about this. Here's a link to some info on it.  https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer. There's a lot of other useful stuff on the main Lungevity site under Lung Cancer 101. If you haven't discovered this yet, I suggest you check it out.

Bridget O

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I know her histological grade is G2

Pathologic stage pT3,pN1,pM1a

Told by oncologist her strain does not respond to keytruda...   Will get more information tomorrow.

 

thanks for your support and responses.

Nora

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Hi, Nora,

Thanks for the detail.  The histological grade and pathologic stage describe certain aspects of the cancer, but what Bridget was talking about are genetic "markers" or mutations in the cancer cells, that provide a clue to what specific types of targeted therapy (different from immunotherapy or chemo) might be effective.  So if that hasn't been done, that's something that should be looked into.

Frankly, it doesn't sound to me like there is enough information at this point to know what kinds of treatments might work.  And there are a lot of people who have to try different approaches before one is effective.  So the bottom line right now, I think, is that it's way too early to predict how long your sister might live, with treatment.  There are a lot of people here on the forums who, if you were to go by the statistics, should have been long gone.  Yet they are here, years and years after diagnosis.

See what the doctors at Penn have to say.  And I was treated right across the river from Philadelphia at the MD Anderson Cancer Center at Cooper Hospital in Camden--another place with a great reputation.  Maybe your sister could see doctors further away to determine a course of treatment that could be administered closer to home (I don't know, but it's worth asking about if travel is an issue).  

I hope you get some more information soon--I know how stressful it is not knowing.

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