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Joan M · 07-14-2008, 06:28 PM

Hi Mary Jo,

Last Thursday I decided on radiofrequency ablation but it's not yet official, meaning that the intervention radiologist hasn't phoned back yet to answer a few more questions even though I called his office last week.

I called again today but still haven't heard.

Despite the recommendation of the oncologist at Sloan-Kettering to treat the nodule with systemic therapy, the surgeon there said she would do a lobectomy if I wanted, and that's what got me thinking again about RFA.

I really don't want to do a lobectomy. If I have a propensity for mets in the lung, then what happens when they start to appear in my right lung, and my upper left lobe, or two-thirds of my left lung, is missing.

I wanted the surgeon to do a segmentectomy, preserving the lingula, which is a vestige of the middle lobe (the right lung has a middle lobe but the left doesn't), but she felt that anything less than a lobectomy would result in a recurrence.

I understand her reasoning, but I don't have primary lung cancer, so there's a high probability that I'll have other lung mets.

My oncologist prefers chemo (Xeloda added to the Herceptin) or a lobectomy. She's not in favor of RFA, saying it's not standard of care, and was really warning me away from it.

I actually think it's a good option even though the outcomes aren't that good. It can treat the nodule locally, extend time to progression. It doesn't discriminate like chemo -- it burns off cancer cells regardless of the idiosyncracies of genetic makeup. Also, my nodule is less than 1 cm, which favors a better outcome.

I also think it has a palliative use for lung mets.

I know that RFA is used a lot for inoperable lung cancers, but since I have mets, it's not exactly an apples-to-apples comparison, even though I can tolerate the surgery.

Here's a recent news story on RFA which discusses outcomes: http://www.medwire-news.md/379/73940...ng_cancer.html

I'm starting to get very anxious with all this waiting. The surgeon had the lab at Sloan compare my slides from the lung resection last year with the original slides from my mastectomy in 2003, had me meet with the onc there for his input, and then had me come back to see her again. This took almost a month. Then on top of that, my own onc went on a vactation for two weeks the day before I was supposed to meet with the surgeon again and I didn't see her until last Tuesday. And now that I've made up my mind, I haven't heard back from the radiation interventionist.

The onc at Sloan was not in favor of any surgery, he recommended systemic therapy to the surgeon, and some how I doubt that he'd be thrilled about RFA either.

How have you been?

I've been so busy working, running around to doctor appointments, and visiting my family in New Hope that I haven't even had time to send you the photos from Longwood Gardens. Then my girlfriend from Rome was here visiting. I've loaded the photos into my computer but haven't gotten a chance to really look at them.

Joan

07-14-2008, 06:28 PM	#2
Joan M Senior Member Join Date: Oct 2007 Posts: 1,851	Hi Mary Jo, Last Thursday I decided on radiofrequency ablation but it's not yet official, meaning that the intervention radiologist hasn't phoned back yet to answer a few more questions even though I called his office last week. I called again today but still haven't heard. Despite the recommendation of the oncologist at Sloan-Kettering to treat the nodule with systemic therapy, the surgeon there said she would do a lobectomy if I wanted, and that's what got me thinking again about RFA. I really don't want to do a lobectomy. If I have a propensity for mets in the lung, then what happens when they start to appear in my right lung, and my upper left lobe, or two-thirds of my left lung, is missing. I wanted the surgeon to do a segmentectomy, preserving the lingula, which is a vestige of the middle lobe (the right lung has a middle lobe but the left doesn't), but she felt that anything less than a lobectomy would result in a recurrence. I understand her reasoning, but I don't have primary lung cancer, so there's a high probability that I'll have other lung mets. My oncologist prefers chemo (Xeloda added to the Herceptin) or a lobectomy. She's not in favor of RFA, saying it's not standard of care, and was really warning me away from it. I actually think it's a good option even though the outcomes aren't that good. It can treat the nodule locally, extend time to progression. It doesn't discriminate like chemo -- it burns off cancer cells regardless of the idiosyncracies of genetic makeup. Also, my nodule is less than 1 cm, which favors a better outcome. I also think it has a palliative use for lung mets. I know that RFA is used a lot for inoperable lung cancers, but since I have mets, it's not exactly an apples-to-apples comparison, even though I can tolerate the surgery. Here's a recent news story on RFA which discusses outcomes: http://www.medwire-news.md/379/73940...ng_cancer.html I'm starting to get very anxious with all this waiting. The surgeon had the lab at Sloan compare my slides from the lung resection last year with the original slides from my mastectomy in 2003, had me meet with the onc there for his input, and then had me come back to see her again. This took almost a month. Then on top of that, my own onc went on a vactation for two weeks the day before I was supposed to meet with the surgeon again and I didn't see her until last Tuesday. And now that I've made up my mind, I haven't heard back from the radiation interventionist. The onc at Sloan was not in favor of any surgery, he recommended systemic therapy to the surgeon, and some how I doubt that he'd be thrilled about RFA either. How have you been? I've been so busy working, running around to doctor appointments, and visiting my family in New Hope that I haven't even had time to send you the photos from Longwood Gardens. Then my girlfriend from Rome was here visiting. I've loaded the photos into my computer but haven't gotten a chance to really look at them. Joan __________________ Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!