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Old 01-18-2016, 07:57 PM   #1
rinaina
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Radiation repercussions almost 10 years later

September 17 I was hospitalized following an ER visit due to heart symptoms. I have good blood pressure and no previous heart history. I do have Sjogrens Syndrome, an auto-immune disease.
My symptoms that brought me to the ER were a feeling of strong indigestion, not reflux, and I never felt such a strong feeling before, beginning in my chest and working its way up to my throat. After several episodes and a feeling of jaw pain, I decided to high tail it to the ER. They were concerned and took blood started an iv within minutes a cardiologist, my husbands, said she wanted to do an angiogram. That was normal, no blockages. Next day they did echocardiogram and a heart Mri. Do was pericarditis and fibrosis possibly due to prior breast radiation. Now fast forward to my 3rd breast reconstruction on December 7. Surgery went fine but had oxygen saturation issues in recovery so stayed in recovery 6 hours before being admitted to a room. They did a chest X-ray and it showed cardiomegaly, hazy opacity throughout lungs suggesting alveolar edema, moderate to marked hypo inflation and micros telecasts. There was a patchy consolidation at the left lung base which may be atelectasis or infiltrate. It also confirmed fibrosis in a part of heart. I attribute all this to breast radiation back in 2006. Anyone else with lung issues due to radiation. Feeling so frustrated. It wasn't enough to deal with a Her 2 do then have giant crater open wounds following my first breast reconstruction. Now very concerned about my heart and lungs. So upset.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 01-19-2016, 06:54 AM   #2
sarah
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Re: Radiation repercussions almost 10 years later

Hello Rina
and yes, yes, yes. Like you, many, many years after chemo and radiation I had and still have both heart and lung complications. I have recurring pericarditis (take anti-inflammatories to help that and stop all exercise and carrying heavy things or doing anything strenuous) and fibrosis in the right lung, also had chest pains and a heart attack and they found a collapsed artery and had angioplasty and a stent put in. all this linked to radiation. When I was having the stent put in, I asked the cardiologist that while he was in there, did he see any plaque. He replied "it's not plaque, it's the radiation!" took a moment to point out my tattoos. I had the heart attack and angioplasty about 10 years out! I really suggest that all cancer patients should be followed by a cardiologist. My cancer was on my right side but it was invasive and they irradiated me enough to touch the heart on the left side. The lung is annoying because I find I get out of breath easily. I go to the gym but I have great difficulty doing anything too aerobic or walking up hills. Still better to be here still than under ground.
I carry Natispray with me at all times for chest pain and 2 aspirins which you chew up immediately if you suspect a heart attack.
I was also given an inhaler for the lungs but only use it when I expect to be doing something strenuous or it's very cold.
you're not alone
hugs and love
sarah
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Old 01-19-2016, 04:18 PM   #3
rinaina
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Re: Radiation repercussions almost 10 years later

Thanks Sarah for your reply. Sorry to hear that you have dealt also with the serious ramifications of radiation. It's so frustrating that we do what we are suppose to and yet years later we have complications by doing so. Thanks for your info. I too get short of breath when physically exerting myself and yrs ago had it checked out by a pulmonologist bit at that time tests were negative and that was that. This time around I will see a different pulmonologist and want answers as well as my cardiologist. I'd like to do whatever I can to prevent a serious problem if that's even possible.
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~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 01-19-2016, 05:41 PM   #4
agness
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Re: Radiation repercussions almost 10 years later

That totally sucks. You do the best you can but then they overtreat patients and treat is as if we won't live so it doesn't matter -- but it does.

It sounds like you have some great advice above. Maybe craniosacral therapy too? It's kind of unusual in getting deep into the viscera, either that or a DO.

Hugs
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-19-2016, 06:27 PM   #5
Pat94
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Re: Radiation repercussions almost 10 years later

I finished radiation 8/1/14. Early this month I caught a cold. Had to see my family Dr. for the continuing cough. The Nurse Practitioner heard wheezing and had an x-ray taken. It was so different from my last one there years ago she wanted a CT scan and for me to start prednisone for lung inflammation. Turns out she was seeing the radiation damage to my right lung. I deferred to my oncologist and refused to take the prednisone. He sees me in a couple of weeks and will decide on what to do. He explained my condition may be radiographic pneumonitis. My CT scans for him have shown the damage for a long time but he is concerned it may have gotten worse. Since the cold started I become breathless when I climb stairs. I saw a cardiologist the week before the cold started and my heart checked out just fine so I am sure it is the lung. The intense cold we have right now makes it worse. I am so tired of one problem cascading into more.

Then I see what others are going through and remind myself how lucky I am. While my white blood count is normal, I realize it will take me longer to heal from respiratory infections with the limited lung function. I think it is a good warning to all of us to be careful with viral and bacterial infections.
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Old 01-19-2016, 06:45 PM   #6
rinaina
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Re: Radiation repercussions almost 10 years later

Agness,
What is craniosacrral therapy and why would I need it and also DO?
__________________
~Rina~
Dx:3/06 had a lumpectomy April 19, 2006
Her2+ er/pr- Stage I Grade 3 tumor size 1.4 cm, node negative
AC 4 dense doses
34 radiation treatments including booster doses
receiving herceptin every 3 weeks since late August 2006 for 12 months
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Old 01-19-2016, 08:13 PM   #7
agness
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Re: Radiation repercussions almost 10 years later

I used different healing modalities after rads to help heal. Craniosacral, myofacial release, and lymphatic massage. Even though they don't tell you this, the first six months are critical to tissue healing -- and that isn't even counting the spillage they did on your insides.

Craniosacral massage is interesting because I've got two women who have practiced it on me. One was able to correct a vagus nerve issue in a minute where my RO was going to have me taking viscous lidocaine with pain for more than two months. I'm having craniosacral massage with my brain rads now too, it gets into your body and connects things in ways that other massage doesn't. Having someone who understands the lymphatic system helps a lot. Some don't believe in it but with cerebellar mets I don't know anyone else who can help me with my brain in this way and it doesn't feel bad. Might not be your cup of tea.

https://en.wikipedia.org/wiki/Craniosacral_therapy

A DO is a doctor of osteopathy, a medical system that is as old as the allopathic system in our country. You are more likely to encounter they outside of the States but there are still many practitioners here. They are trained in medicine but also have a deeper understanding of the systems of the body. There's someone one the boards here from Scotland who also can tell you about it.

You can learn more about osteopathy here:
http://doctorsthatdo.org/difference



There is a useful article I found about radiation fibrosis that you might like to read. Maybe the doc would talk to you about your heart issues.

Radiation Fibrosis Syndrome: What It Is and How to Treat It
http://www.cancerforward.org/survivo...ow-to-treat-it
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-20-2016, 04:18 AM   #8
Juls
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Re: Radiation repercussions almost 10 years later

I have been going to an Osteopath (L5 problem) for last few weeks. Treatment is very gentle but does work. To be honest you think the manipulation is so gentle that it is pointless. Then a few hours later you can feel the effect!
My Husband also going now (he has had sciatica for years). He felt an improvement after 1 appointment.
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Old 01-20-2016, 10:50 AM   #9
sarah
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Re: Radiation repercussions almost 10 years later

good luck Rina, good that you're looking into what can be done and asking questions.
They never tell us everything!
health and happiness
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Old 01-21-2016, 05:06 PM   #10
broccoli
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Re: Radiation repercussions almost 10 years later

I received radiation therapy to my left breast in November of 2012. They had me do ABC breathing (assisted breath control) to reduce exposure to my heart -- but at the expense of my lung. I will admit that I am highly aware of any changes in my lungs anyway, but for the past 3 years I've noticed a raspy soreness in my lungs that I usually get after a bad cold or flu. A CT confirmed that there is radiation fibrosis in my lung.
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2012-Feb-29 D-Day: IDC ER-/PR- HER2+++ Grade 3, Stage 3 - several biopsy proven positive nodes
2012-Mar - July: Neoadjuvant FEC-D + Herceptin (6 rounds)
2012-Apr: DVT in arm that received chemo - put on LMW Heparin
2012-Apr: Port installed
2012-Sep-7: Lumpectomy + ALND - pCR with residual DCIS
2012-Oct: Switched from LMW Heparin to Warfarin
2012-Oct-Nov: 30 days of rads
2013-Jan: Entered Adjuvant Metformin trial (Metformin or placebo for 5 years)
2013-Jan: Switched from Warfarin to Xarelto
2013-Mar: First signs of lymphedema
2013-May-16: Last Herceptin (17 doses in total)
2013-Jun: Port removed and anticoagulants stopped
2014-Mar: Lymphedema worsened and became unresponsive to treatment
2015-Apr: Started PENTOCLO protocol to attempt to improve radiation fibrosis
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Old 01-22-2016, 07:55 AM   #11
Hopeful
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Re: Radiation repercussions almost 10 years later

I had radiation to the left side of my chest while undergoing Herceptin treatment in September of 2006. At my latest check-ups, both my radiation oncologist and my oncologist suggested I start seeing a cardiologist to get a baseline echo and then repeat at five year intervals if no symptoms. I also had heart-sparing radiation, but my radiation oncologist said they are finding that "sparing" isn't quite as sparing as they thought. The fact that they could keep my heart from being damaged was the only reason I agreed to rads in the first place. I wondered if the cardiology recommendation was overkill until I read this thread. Will be making an appointment today.

Hopeful
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Old 01-22-2016, 01:18 PM   #12
agness
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Re: Radiation repercussions almost 10 years later

Another thought, you can use hyperbaric oxygen to help heal and treat tissues affected by radition necrosis. Ten years is a long time but it isn't going to get better and why not try to do more.

Here are some links but you can also do a search for "pubmed hyperbaric lung" or whatnot

Hyperbaric oxygen therapy: Can it prevent irradiation-induced necrosis?

http://www.sciencedirect.com/science...14488612001094

https://www.virginiamason.org/RadiationTissueInjury

I looked into HBO last year after finishing rads and got pushback. They seem to want to treat fibrosis even though the evidence says sooner is better. Maybe if I looked around then -- but you should so that now and your insurance should cover it.


Little do ROs say anything but the first 6 months after radiation are when the body does the most tissue healing and remodeling. There is a lot you can do in terms of lympatic massage, vibration (my body tipped me off on this one), myofacial release and craniosacral massage but they don't study it and don't tell you anything other than --- see you in six months. I think it is horrible and makes me angry.

I was able to participate in, at my financial expense, a study using proton therapy on breast cancer to treat the chest wall. I couldn't get her to treat less of my breast and damn I had a bad external reaction but my lungs and heart were spared, just a minor amount of my pleura was caught in range. It was the best I could do to reduce the amount of damage with a left-sided breast cancer and Herceptin. Too bad my brain mets screwed up her data.
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 01-23-2016, 09:03 PM   #13
Catherine
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Re: Radiation repercussions almost 10 years later

All very interesting. I get out of breath after much exercise. I am the only one in my yoga class that can not fold over in our class during our morning yoga salutations. I plan to see a cardiologist in June. Thank you so much for this post. It gives me courage to ask more questions about my physical limitations. 10 yeRs ago a I had a lot of radiation. No one even mentioned heart sparing. Oh well, happy to be here!
__________________
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Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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