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mom newly diagnosed


AmyGM

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Hi everyone:  My name is Amy and my mom (age69) was just recently diagnosed on Thursday.  She had a screening ct scan on July 14th which showed a nodule, then a PET scan on Wednesday, 8/29 which revealed a 1.4 cm right upper lobe pulmonary nodule and 4 hyper metabolic borderline enlarged and mildly enlarged mediastinal lymph nodes.  prelim radiographic TNM staging is IIIa; T2; N2; M0 and the lung cancer is resectable.  She is scheduled for a bronchoscopy biopsy on 8/6 and then an appt. with her pulmonary specialist on 8/10 to discuss the biopsy results.  I am a 3 year triple neg. breast cancer survivor and am very scared about what is ahead.  Any advice would be greatly appreciated.  Thank you. I.hate.cancer!

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Amy,

 

I hate cancer also!  As a breast cancer survivor, you'll know most of the drill.  Unfortunately, you'll need to wait for biopsy results to plot a treatment path.  Hopefully the cancer is confined to the upper lobe nodule but the lymph node description would concern me.  Perhaps minimally invasive surgery is an option.  If surgery is performed, she'll normally receive after surgery chemotherapy treatments.  Drugs used will likely be determined by biopsy results.  If surgery is not an option, perhaps cyber knife radiation could be used to treat the small tumor and problem lymph nodes if diseased.  

 

Advice - ensure someone accompanies your mom on all doctor consultations to ask questions and take notes.  My bronchoscopies caused a very sore throat so ensure your mom gets a script for the magic cough medicine and buy some Chloraseptic throat spray.  Do you know if the pulmonologist is planning to use a flexible or rigid bronchoscope?  Deeper anesthesia was required for me with the rigid scope.  I trust she is seeing a medical oncologist.  You might be looking for a thoracic surgeon between now and the biopsy.

 

Stay connected and let us know what is going on.

 

Tom   

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Tom,

Thank you for the quick response! I have been reading a lot about neoadjuvant chemo in some advance lung cancers, so we may be facing that. I had neoadjuvant chemo to get into my system prior to surgery. I will definitely ask about the cyber knife radiation if surgery is out. I will be with her for the biopsy and follow up appt. (I live 6.5 hrs away, but know first hand that she needs someone with her to write things down, ask questions and to hold her hand). Don't know about the flexible or rigid scope, but will ask. I will ask for the magic cough med. and will get her chloraseptic spray.

Her pulmonary doc has suggested a thoracic surgeon in Fairfax Va (she's in Winchester-1.5 hr drive) but I want my mom to consider a research hospital like UVA. Any thoughts on this? We have not met the med. Oncologist yet.

Thanks again.......nice to connect with survivors

Best,

Amy

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Amy,

 

My experience suggests choosing doctors based upon recommendations from doctors.  I pushed back when my GP referred me to a thoracic surgeon at a large DFW metroplex hospital.  I thought the small local local hospital would be more convenient.  My naiveness about cancer was evident in those early days.  He told me I had a complex surgical case and should have it performed at a place that does thousands of such cases a year.  He also explained that surgery is a team activity.  He was right.  So if there is a well known thoracic surgeon experienced in cancer resections at UVA, I'd be making the drive. 

 

My experience also suggests a medical oncologist is normally well connected with surgeons of all disciplines, and maybe more importantly, radiation oncologists who use modern radiation therapy en lieu of surgery.  I'd heavily weigh the medical oncologist's opinion before I'd choose a treatment plan.  For lung cancer, medical oncologists are the quarterback of the treatment team.

 

Stay connected.  I pray for a good outcome.

 

Tom

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Tom:

 

Thanks for staying in touch.  You have given me great suggestions/advice.  I am going to call the pulmonary doc. in the am with my questions.  I will post what I find out.  I am also going to call UVA and get her an appt. for a second opinion.  I feel like the wheels are moving way too slow.  She lives in a smaller community (they only do PET Scans two days a week?) I have been busy all day creating a notebook with her paperwork that she will need, copies of scan reports, medication lists etc... I dread having to help her to complete an advance health care directive.  I am reliving my nightmare all over again but she is worth it.  Thank you again!

 

Best,

Amy

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Tom:  

 

None of my mom's doctors have called me back so I called UVA Lung Cancer Clinic and referred her for a second opinion.  We go in the am.  Can't wait another two weeks for all the rural docs to get it together enough to collaborate.  Praying for a miracle!  Thank you for the support.  

 

Best,

Amy :|

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Hi Amy,

You sound like an amazing advocate for your mom.  I'm also a cancer survivor who became a caregiver for my dad.  His lung cancer was not found early and 13 years ago there were very few options.  The positive news is that there are more options and your mom has a great advocate on her side- you!  Please keep us posted on how the second opinion goes.  Tom gave some great practical advice.  If you are looking for some more info, our website has a comprehensive lung cancer 101 section that is extremely thorough and easy to understand.  We also have a survivor resource center and a caregiver resource center on this website with questions to ask your doctors and listings of resources.  Also, feel free to connect with me directly for any patient/caregiver navigation you might need. 

Keep us posted and keep posting!  

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Hi Amy, 

You have some great advice on here. I just wanted to add that LUNGevity has a link for questions to ask, and checklists to take with you. Here is the link to those. http://www.lungevity.org/support-survivorship/asking-right-questions

 

Please keep us updated and let us know if you have any questions. 

 

Best,

Cindy

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