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Topic: Anyone with lung/heart damage from left breast radiation?

Forum: Radiation Therapy - Before, During and After — What to expect from treatment and ways to cope with side effects.

Posted on: May 20, 2012 12:06AM

Infobabe wrote:

Do you think this complcation is being managed adequately?

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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May 20, 2012 12:30AM Dianarose wrote:

I had lung problems about 6 months after rads. I woke up in the night and couldn't catch a breath. I went to my primary and he sent me for a lung x-ray. There was fluid trapped between my lung lining and scar tissue. It took several months to go away. I have to have rads on the right side after I finish chemo and the RO said it could possibly happen again. It usually doesn't happen for months after treatment. I must say it was scary as hell. My scans show scar tissue in my lungs from rads. They are supposed to line you up to keep that happening, but sometimes I think it is so we will go through it. That was my experience, but it doesn't mean it will happen to everyone. My scans said my heart looked good though.

6/10/13 mets to ovary now stage IV Dx 3/22/2012, ILC, 1cm, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/31/2012 CMF Radiation Therapy 12/3/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/10/2013 Aromasin (exemestane)
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May 20, 2012 02:20AM Infobabe wrote:

Thanks, Dianarose.  That is what I am afraid of.  I have been on the fence for double Mastectomy.  Mine is so early, it all seems to be so much.  No one has mentioned oncotype but I sure am.

If you aren't in a major urban area, I have doubts about how advanced our beast centers are.  I could go to U. of Michigan but it would be an hour and a half each way.

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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May 20, 2012 10:04AM Dianarose wrote:

Infobabe- I have to head out to work, but I wll PM you this evening.

6/10/13 mets to ovary now stage IV Dx 3/22/2012, ILC, 1cm, Stage IIIC, Grade 2, 17/17 nodes, ER+/PR+, HER2- Chemotherapy 5/31/2012 CMF Radiation Therapy 12/3/2012 3DCRT: Breast, Lymph nodes Hormonal Therapy 8/10/2013 Aromasin (exemestane)
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May 20, 2012 02:57PM bevin wrote:

I have right lung damage from rads. a 3cm x 6cm area of fibrosis. They measure it every 6 months, no change. I understand once it goes to a fibrosis it wont get better. My only symptoms are a heaviness on the right side and I cough alot when I laugh and excercise.

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/10/2010 Lumpectomy: Right; Lymph node removal: Sentinel, Right Radiation Therapy 10/10/2010 Breast
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May 20, 2012 05:07PM , edited May 21, 2012 04:00PM by Infobabe

bevin 

You say ""once it goes to a fibrosis it wont get better."  Can not they remove it surgically?  I suppose not since it is the lung we are talking about.

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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May 26, 2012 09:47PM Infobabe wrote:

I have another question.  Does the position of where the DCIS was removed have a bearing on the radiation treatment?

In my case, the position is high, about 12:30 and close to the surface.  Is it easier to avoid frying the lung and heart which are deeper and lower? 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jun 6, 2012 02:30AM , edited Jun 6, 2012 02:40AM by HealingDreams

I don't think that the location of the tumor matters because all of the breast tissue is at risk and is irradiated. Remember that breast tissue extends beyond what we usually think of as the breast.

My radiologist told me that there will be lung damage because the lungs are so close to the chest wall and the lungs are very sensitive to radiation. But, she said, we have lots of lung capacity and there is only a 1% risk of cough and shortness of breath.

Interestingly, she didn't give me the statistics related to heart damage but said that the risk had been significantly reduced by new technology. She does a CT scan before radiation to determine exactly where the heart is. If it is close to the chest wall, they do IMRT, also known as curved radiation, in order to avoid the heart.

She also told me that the OncotypeDX test does provide risk-benefit information for DCIS and radiation. You will definitely want to have that information.

For IDC, my cancer, there is only the general information that there is a 20% chance of local recurrence without radiation and only a 5% chance with it. That is actually decisive for me. I won, as we all did, the 12.5% lottery (1 in 8 women). I don't like that 20% number.

I'm not in a major metropolitan area (250,000 people) and no medical school. But I trust the radiation oncologist. I think she's smart and careful. She has to work with a whole team to set up the equipment and she believes the team is good. She said that she wouldn't have come to the facility where I am getting treatment if she didn't believe that they were excellent.  

Oncotype score: 8; 50 grays of radiation over 25 sessions Dx 4/23/2012, IDC, 1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 5/16/2012 Lumpectomy: Left; Lymph node removal: Sentinel, Left Hormonal Therapy 6/14/2012 Arimidex (anastrozole) Radiation Therapy 6/19/2012 Breast, Lymph nodes
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Jun 6, 2012 02:50AM Infobabe wrote:

 HealingDreams

Thanks for that info.

I have since seen my MO and when I asked about Oncotype she said "You'r not getting it."  And she also said that a person has to be on Tomoxifen to get the Oncotpe.  This is untrue.  So she was lying or is uninformed.  My RO said "they don't do that." Actually, it was a staff person who relayed the message.  I asked who "they" was, doctor, hospital, ?, and she didn't know.

I see the RO June 11 for a simulation.  I am tempted to refuse radiaton altogether.  The lumpectomy got all the DCIS, grade 1, out with wide margins and I will give Tomoxifen a try.  I think this is such overkill and I am going to come out of this worse than I started.  The cure is worse than the disease. 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jun 6, 2012 02:51AM deborye wrote:

No problem here.  Just passed my 5 year cancerversary.

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Jun 6, 2012 03:01AM Infobabe wrote:

deborye

Is this your right or left breast?  And you had how many rads? 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jun 9, 2012 02:18AM deborye wrote:

Left breast.  I think it was 26 and 5 boosts. 

I did spend most of Memorial Day weekend in the hospital with Breast Cellulitis.  Was given Vancomycin IV 3 treatments every 24 hours.  I can't believe after 5 years this happens.  A radiated breast can not fight off bacteria because the tissue is damaged. A small break in the skin from a bug bite or scratch can cause this.  I love to work in my yard and garden, some how I must have itched my tata not realizing it with dirt on my hand or glove.  I am still on antibiotics.  

Sorry to get off the topic. Foot in mouth 

~~~Deb~~~NEVER GIVE UP/NEVER SURRENDER**IDC 6mm & DCIS 7mm
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Jun 9, 2012 02:48AM , edited Jun 9, 2012 11:55AM by Infobabe

deborye 

Thanks for that response.

That is scary about the radiated breast being vunerable to infection.

Did you have any heart or lung damage? 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jun 13, 2012 01:46AM mamglam wrote:

I finished radiation 6 weeks ago and did have some issues with burns from the treatment.  That sent me to a wound care clinic for nearly 3 weeks daily (this was after finishing rads).  Last week, I saw the RO for a follow-up appt and found my breast to be warm and red.  She put me on antibiotics for a week and to reassess again this week.  At my appt. today, the breast is still the same - red and warm!  The RO has recommended a change of antibiotics and to again, reassess next week.  These news have made me emotional and tears just keep coming... 

Dx 12/29/2011, IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 1/27/2012 Lumpectomy: Right; Lymph node removal: Sentinel, Right Hormonal Therapy 2/29/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/9/2012 Whole-breast: Breast
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Jun 13, 2012 02:25AM Cindyl wrote:

I am sorry that you are still having problems!  Hope things get better soon.

Stay calm, have courage and watch for signs. Dx 2/11/2012, IDC, 3cm, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 3/1/2012 Lumpectomy: Right; Lymph node removal: Sentinel, Underarm/Axillary, Right Radiation Therapy 4/16/2012 Hormonal Therapy 5/23/2012
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Jun 13, 2012 02:55AM mamglam wrote:

Thanks for your support Cindyl!

Dx 12/29/2011, IDC, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 1/27/2012 Lumpectomy: Right; Lymph node removal: Sentinel, Right Hormonal Therapy 2/29/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/9/2012 Whole-breast: Breast
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Jun 13, 2012 03:35AM , edited Aug 24, 2012 03:54PM by Infobabe

mamglam

Me too.  I am so very sorry.  My heart goes out to you and it could be me too.  That is why I have asked the question.

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Aug 24, 2012 05:12AM clam2010 wrote:

I am a 4 year breast cancer survivor.  I had 2 lumpectomies on my right breast and 13 lymph nodes removed.  All of them were clear.  I had 6.5 weeks of radiation but no chemotherapy.  I started experiencing shortness of breath.  I had a cardio work up and pulmonary function test.  Both showed very minor problems, like super mild COPD.  I started an inhaler but it didn't help.  I have had thyroid problems for 15 years.  Since the cancer/radiation, the thyroid stimulator hormone is constantly fluctuating.  I have my blood checked every 6 weeks and usually need to adjust the thyroid meds.  I have had 3 CT scans of my chest and the radiologist found nodules on my lungs.  The doctor suspects the radiation damaged my airways and I now have a new inhaler which appears to be helping.

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Aug 24, 2012 08:27PM , edited Aug 24, 2012 08:28PM by Infobabe

 clam2010 

Thank you for sharing your story with rads.  

At the time I created this thread I was trying to figure out if I should go ahead with them or not.  Because if stories like yours I decided to not go through with rads even though I had gone so far as to have the simulation. I expected to then have a mastectomy.  With the benefit of a 2nd opinion from Dr.  Michael Lagious, I decided against a mastectomy too.

I know the path I took is not for everyone, no two cases are the same, but I do believe it was the right one for me.   Many women breeze through with rads, no problem.  I saw my primary physician a few days ago and she approves of what I have done as does my MO.

I very much regret what happened to you.  You apparently had invasive breast cancer so drastic treatment would be recommended.  An alternative would have been a mastectomy.  That is frightening and irreversible so I know why women shrink from it.  I did.  But I think the medical community should push that first instead of rads.

Best wishes to you and I am very grateful that you posted on this thread. 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Aug 24, 2012 09:19PM , edited Aug 24, 2012 09:20PM by slousha

This Post was deleted by slousha.
Dx 11/13/2009, IDC, 1cm, Stage IIIA, Grade 3, 7/15 nodes, ER+/PR+, HER2+
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Aug 24, 2012 09:20PM slousha wrote:

Hi infobabe,

I have had 25 + 5 left breast radiation in summer 2010 on a linear accelerator. Because of being on Herceptin at the same time I'm in a study - controlling heart issues every year. This year too my check up was completely OK without any signs of heart damage. I'm about your age!

Best

Usha

Dx 11/13/2009, IDC, 1cm, Stage IIIA, Grade 3, 7/15 nodes, ER+/PR+, HER2+
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Sep 3, 2012 09:05PM Infobabe wrote:

 slousha 

Thank you for that post.  It will give encouragement to women starting with rads. 

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jun 25, 2014 11:06AM calendar_girl wrote:

hi I read your post and anyone with breast problems or breast cancer particularly if they have a thyroid problem (I had breast cancer in 92, 95 and 2014 and this on is aggressive triple negative and a multinodular goiter for years) read Lynn Farrow's book the iodine crisis.

It is even thought by some that iodine deficiency is the underlying cause of breast cancer and that the underlying cause of iodine deficiency or bromide dominance from a chemical put in almost everything that competes with iodine for the iodine receptor sites and wins knocking our iodine out of the system.  It is also strongly correlated with any reproductive area cancer (cervical, uterine, prostrate) and a host of other things from diabetes to obesity.

There is also a forum at curezone for iodine.

I have been on it 10 days after reading the book after some people told me about it.  I bet I have half of the things that have been helped by it on that list of ills.

One doctor found 90% of Americans are iodine deficient and I was told if you have breast cancer. you are iodine deficient for sure and to start on the iodine protocol from the book that has the cofactors that doctors who relooked at this issue found helped people.

Just a day of so I read that women under 30 who get breast cancer, that 80%of them eventually die form it even though all the lump was removed due to an early stage so it is a systemic disease that ones needs to find the causes of it rather than just treat the tumor and the cancer cells but rather fix what it is that is wrong in your body that is making cancer.

I suggest you look at all the posts I did here for some man recently to see some ideas of some things that have helped others and also check out chrisbeatancer and curezone for some alternative health info.


http://www.inspire.com/Beemer/journal/my-back-finally-lost-the-battle/?reply_sort=asc&page=2#replies

look for calendar_girl posts on page 2 and 3 I did three posts in all and these should be of help to anyone with breast cancer and other cancers and diseases for that matter.

I when they first found a different cancer insitu in 92 had only lumpectomy but it recurred in 95 I think this was cause they did not get it all and at that time I had 2 more lumpectomies with radiation..I have just read at this time they did not protect the heart and lungs like they do now and they had to give me more radiation than normal..at that time I was not as knowledgeable about alliterative health and would not have had radiation if I knew then what I do now. I was told the radiation can bounce of equipment and cause cancer in the glands in the neck, and the breasts..I was also told they would radiate some of my heart and lungs.

I was though taking about 150 supplement capsules (primarily antioxidants like grapeseed extract and pycnogenol, vitamin c etc. I also applied a cream in the hospital bathroom after radiation consisting of fresh aloe, calendula oil and vitamin e oil.

I was told I would have 5 terrible side effects by the radiation doctor who had had breast cancer and radiation herself  I only had 1 of these 5 and not as bad as normal..

I was told breast would be hard as the wall/rock and it is pretty much normal though denser than other that I would have several twingy sensations daily and I have never had one..I now forget the other two and also I would have 3rd degree burns by week tow,,I had none till week 5 they were stunned saying how lucky I was I did not tell them I was taking this stuff).

I had a live blood cells test a week later at a health herb conference someone talked me into going to..I did not tell them I had just completed radiation or anything and they found in the single drop of blood from my finger they looked at free radical damage in every cell in the sample..I was pretty shocked.  who knows what might have happened if I had not taken all those antioxidants that help with free radical damage.

I have since read they now recommend that one does not take radiation or chemo with antioxidants as it may interfere with the treatment I think it makes the cells too healthy maybe),

Anyhow I thought I was done with cancer till I recently found a large lump 19 years after the radiation. But this time it is invasive and grade three aggressive and a different cancer they say.

So it seems though the cancer was fixed something in me still makes me prone to cancer, I breastfed a long time on demand and have not wore a bra sine then (35 or so ears ago and bras some think can lead to cancer ..I =attribute it to several factors not eating healthy enough though I ate very healthy I was not vegan till more recently. my very negative thinking, depression, anxiety  anger hatred or grudges,frustration and just general negative and at times suidal ideation, not enough sunlight, and exercise and sleep, iodine deficiency...and a likely genetic link as there were three including me with breast cancer before 50...it wound up eventually killing the other two and cancer of other types in several relatives.

If one believes they are an unlucky victim and there is nothing they can do, they hand the ability to cure themselves over to a doctor and they do not then feel the ability to change their prognosis with a lifestyle change and yet so many people have cured themselves with these e natural type things and all the stories or programs I ever heard of used lots of raw fruit and veggies and juicing/juice fasting..

check out that link II gave and the book iodine crisis

I never realized these things might be connected to the radiation except for the cancer but I have had heart arrhythmia and many years of hacking and unbearable coughing so hard it threw my back out and made me feel like I ad fractured my ribs as radiated around the front and this would go on for several hours straight.not sure the cause of the radiation or something else but this may have been silent reflux so far though my lungs and heart seem ok but radiation can cause cancer and cancer can kill you like the heart. I believe I have a parathyroid tumor which is reeking havoc in my life and that came due those high level of radiation i got over a decade ago,.

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Jun 25, 2014 12:53PM Momine wrote:

Infobabe, why are they planning to give you rads for DCIS? I thought surgery was considered sufficient.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Jun 25, 2014 02:28PM Infobabe wrote:

Momine, rads are standard for DCIS.  Now, there is a lot of discussion about taking the C (carcinoma) out of DCIS.  I did not have rads in the end.  I refused rads and was going to have a MX, but with more study and a second opinion, dicided that I was having no further treatment.  

The trouble with DCIS is that some will evolve to become invasive, especially grade three with other features.  We cannot tell which ones will turn at this point.  Beesie has written extensively on this issue.

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jun 25, 2014 02:40PM Infobabe wrote:

Calendar girl,  rads are forever.  The damage can materialize years after treatment.  

Dx 3/15/2012, DCIS, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 5/1/2012 Lumpectomy: Left
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Jul 13, 2014 04:33PM Evgeniya wrote:

just finished my rads. scary staff all was perfect till the last week. and then all hell broke loose... together with m skin. all body aicks... fever..... burns... fatiq like my sone didnot have a clean underware cause mother was not able to get out of bed. free radicals would be my second name

DX 27.03.2014 ILC 42mm grade 2 1 /11 node positive 7.5mm extranodal spread present focal. Lumpectomy. Axillary dissection. ER/PR Positive 90% HER 2 Negative. Ki-67 -6% . 25 extensive Rads , Zolodex
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Jul 13, 2014 09:45PM CTMOM1234 wrote:

No problems here. Approaching my 5 year cancerversary. Just wanted to assure those reading this, because it is pretty scary when only problems get posted.

Wishing everyone the very best of health and happiness!

When I grow up I want to be an old woman. Jan'10 lump.for grade 2 DCIS;SURPRISE1.75mm grade 2 idc in path report,stage 1a; Jan'10 snb 0/3 nodes; Mar-Apr'10 rads: 25 full+5 boosts prone position, stickers/no tats; May'10 declined tamox. Doing fine. Dx 11/1/2009, , ER+/PR+
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Jul 14, 2014 01:50PM SelenaWolf wrote:

Absolutely no problems, going on three years.  Completed a 30-mile bike hike just this past weekend, as well as a two-hour trail ride. 

"... good girls never made history ..."
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Jul 14, 2014 03:42PM Dogsneverlie wrote:

Hi,

I remember being terrified of RADS.  I was so afraid I would have bad burns but as I have posted before, I was diligent with the Eucerin lotion.  My skin got a little leathery but I did not blister or burn really, turned a dark brown.  Mine was on the left side as well and when they radiated the entire breast, I had to hold in my breath to raise my chest.  I had complete faith in my surgeon, oncologist and radiation oncologist along with his team.  I really did not have a horrible experience with RADS except for the initial fear of being treated. 

Feb 24, 2015 BA / 240cc Left and 210cc Right / Allergan Natrelle Silicone Under Muscle Surgery 12/23/2013 Lumpectomy: Left Dx 12/30/2013, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2- Surgery 2/24/2014 Lumpectomy: Left Hormonal Therapy 6/16/2014 Arimidex (anastrozole) Surgery 2/24/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jul 14, 2014 08:20PM rettemich wrote:

I just finished rads last Wednesday. I considered not having them. Actually that would have been my choice. Had a lumpectomy with clean margins and then a reduction. All of the tissue was tested and everything came out clean. My friends and family all wanted me to have the rads. Unfortunately my decision ended up being based on who I could live with, everyone tick off at me that I didn't do it, or me upset that I did. 

I was lucky(?) not to have any major skin issues. But because of the surgeries I had some severe pain inside by breast. RO kept telling me that the rads weren't causing it. Then why is it only happening in the radiated one and not in the other? One told me it was fat narcosis, which it very will could, but said that the rads didn't cause it.  Really? Almost every med journal out there says it is caused by trauma, surgery, and oh, Radiation. Since my rads have stopped my pain as demished by about 75%. I know I am going to somehow regret this decision. They never tell you ALL the side effects. The whole thing and chemo is so barbaric. My RO slipped one day and said that it would be a non issue if they could treat with a hyperbolic chamber, but that would be unrealistic. More unrealistic than chemo or rads? It just wouldn't be a big money maker. After all caner is a multi Billion Dollar business, not health care, business. And will be until people start demanding a cure and not just awareness. 

Ok Rant over Sorry......just passionate

Reduction 3/31/14 Like the Phoenix we too shall rise up. Dx 2/24/2014, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Surgery 3/24/2014 Lumpectomy: Right Dx 3/28/2014, DCIS, <1cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR+ Surgery 3/31/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 5/1/2014 Radiation Therapy 5/28/2014 Breast Hormonal Therapy 12/1/2014 Aromasin (exemestane)

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