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bjoangtx

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Reply with quote  #1 
I just finshed radiation. On the reports I have the radiation oncologist ordered L Subclavic and L Chest Wall Radiation. Does anyone know if this means I recieved radiation to my internal mammary nodes? I hate that I don't truast my doctors to give me good information.

Also I have a patch of skin that remains irritated and red even though rads were over first week of April. Should I be concerned?

Finally I am so tired and I have these cognitive gaps. I cry at times when I never would have before. At work, in front of my son. I feel like I've gone through all this treatment to save someone I don't even know. I hate feeling so sad all the time.

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Joan G
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Reply with quote  #2 

Hi Joan,

Welcome to No Surrender!  You are in the right place, for gathering information, knowledge, compassionate friendships, and understanding... Constantine's posts are a good place to begin... and Gina, who also suffered from Triple Negative as her original diagnosis almost ten years ago... I will be a five year survivor this coming December...

Reading your post brings it all back... namely, the lack of information, the secrecy, the wondering... and the mountains of reading, the endless education, and learning all about Breast Cancer.  To be continued... I'm continuing to learn, from you, and those who battle this beast... our battle cry... "No Surrender"... sometimes it's like a dog whistle... we can hear it... Survivors, that is. 
 
I was diagnosed in 12/2005, and spent all of 2006 having 4 Adriamycin/Cytoxin (AC) treatments, followed by 12 weekly Taxol treatments, followed by 33 Radiation Treatments. 
I am Triple Negative, Sentinel Node Biopsy was negative, the tumor was originally measured as 1.0, and two weeks later, 1.7 cm.  It was Grade 3, Invasive Ductal Carcinoma. My Oncologist called it a Stage 1b, possibly Stage 1c... The Stereotactic Biopsy, and MRI~ indicated an aggressive, high risk, tumor; it was fast growing and stellated with tentacles.  I thought, no problem, I caught it early...

The Surgeon said I probably had it for ten years.  It wasn't found on mammograms because I had dense breast tissue and it was wrapped in a bundle of nerves and scar tissue... my body did it's best to fight the invasion... until it popped out like a Turkey thermometer on Thanksgiving, 2005.  

Three~ horribly, frightening Surgeons... and the fourth was a charm...
He diagnosed, had the proper tests completed, and in less than a week I was scheduled for Surgery... Second Opinions are of the utmost importance... always... always.  I was lucky... someone canceled their appointment, and I was given the best possible treatment. 

I had a Partial Mastectomy... during the surgery, (according to the Oncologist), a rib  and a thumb were broken.  I was never able to get a straight answer about it... but I loved my Surgeon and Oncologist... 
They didn't know how to communicate to patients... however, they were excellent professionals whom I later returned to after a brief experience with Triple Negative Specialists at a highly respected Teaching Hospital... where I was miserable. 

The problem with Triple Negative Basal Subtype Breast Cancer... is there are different subtypes... and not all respond the same way to the same treatments... so what works on one person, is often prescribed to all... and in a sense, until more research is completed, we Triple Negatives are all Guinea Pigs... I will actually consider my treatment a success next year, 2011, when I count exactly five years to the final treatment of Chemo & Rads... December will be the 5 years to diagnosis.  The side effects are supposed to diminish in the following year, and so far there is No Evidence of Recurrence.
There are side effect, there is some pain, there are worrisome aches and mental anguish... but, there is HOPE. 

I was happy to go back to my original Oncologist and Surgeon after appreciating their skills, care, and special attention.  What I learned throughout this long process, was,  that if I wanted to know something, it would be necessary to educate myself, as well as possible, and knowledge is by far, the best weapon for fighting Triple Negative Breast Cancer.

Of course, treatment was not without side effects, and some of my current physical symptoms are linked to pre-existing conditions, like Osteoarthritis...
but overall, I am happy to say I survived it all.  There are days... particularly the "Chemo-brain", and neuropathy, and a few symptoms regarding brittle bones from Radiation, that continue to annoy me. 

As time goes on, I've learned to decipher what is what, and to trust my heart, as well as the opinion of my doctors.  I find it helps to read as much as I can before an office visit, and to make a concise list of important questions, observations, or news about my diagnosis. 

Radiation Treatments~ I remember feeling extremely upset that the Radiation Oncologist was zapping the Clavicle, Lymph nodes, axillary nodes, and deep into the breast tissue... it was then that I discovered my tumor was 2mm from the chest wall... I found out little pieces as I went along, and wish they would have given me the whole truth in a language I could understand...
Now that I speak the language... the visits aren't nearly as torturous...
but it took a few years to really understand the true concept of Breast Cancer, what all the terminology truly indicates...

One thing is for certain... no two Breast Cancers are alike, and every patient should be treated individually...

Although my Oncologist was very young, he was an exceptional human being.
I strongly believe he cared enough about me, to save my life.  He was there to review all of my questions, and answered me to the best of his ability...
I didn't know how to navigate my way around the medical system... and had so many questions, it was difficult to see the forest from the trees.

My Radiation Oncologist went to MD Anderson, in Texas, and he was also an excellent physician, I couldn't have had better care.  At the time, I didn't trust any of the doctors, and felt bitter about having Breast Cancer in the first place... and honestly, I may have had it in the back of my head that they were all supposed to be magicians. 

Now, I look back, and realize... it wasn't the fault of my doctors, it's just the Breast Cancer, that is insidious, relentless, and cruel. 

You may have good reasons for seeking out a new Oncologist, and if you are uncomfortable with your physicians, you should absolutely seek the advice or second opinion of someone you feel is more qualified.  The big problem I had when I switched, was the either, or... The new doctors would not see me unless I switched all of my care to their hospital.  A couple of months after I switched, I cried non-stop, because I had no rapport with the new doctors.
It was a nightmare, for me, personally.  I am greatly relieved to be back with my original physicians... a little worse for wear, but happier for the experience.

I hope my story helps you a little.  The road through Breast Cancer seems treacherous, especially when you feel like a heavy, mesh curtain has been covering your mind, body, heart and soul...
Please, forgive the long, too long post...  I wish there was more I could do to comfort you through this difficult time.  I hope you feel better soon...

(((gentle hugs))), hang in there... you will be okay!

Love,
Indi

Iheartchickens

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Reply with quote  #3 
I have a patch of skin in the "overlap field" that took a long time to heal.  The radiation oncologist told me what it was, something to do with the blood vessels under the skin.  

Did you have a lumpectomy?  I think they radiate the whole breast after a lumpectomy?  I had my IM filed radiated, my chest wall (to a depth of two centimeters into my lungs) plus the whole area under my arm reaching around to my back.  I also had NO cancer cells in my lymph nodes (13) or in the lymph node area.

I had a mastectomy and dose dense chemotherapy as well.  I had hormone negative, her2 negative breast cancer, most of it was still DCIS with a little bit of invasive thrown in.  My thoughts are that until there is an actual cure, the more treatment the better.  If you were er/pr/her2 - the added radiation is a good thing.
edge

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Reply with quote  #4 

Joan:


It can't be determined just from the report you described re left subclavical and chest wall radiation whether the IMN (internal mammary nodes) were included in the field of radiation; they may have been, but this report neither includes nor excludes IMN irradiation.  Such IMN irradiation is done by special procedure to avoid cardiac irradiation and minimize lung irradiation, as it can carry a small risk of heart or lung trauma, although the benefit generally outweighs these risks. You may have to ask, "was I given IMN - internal mammary node - irradiation" to be sure of what was done.

 

On another theme Joan, you may want to explore options for some mood support, since depressive symptoms are all too common - and underestimated - in breast cancer patients.  There  are both many excellent traditional antidepressants as well as CAM (natural) interventions like (1) 5-MTHF folate therapy, (2) SAM-e, and (3) BLT: bright light therapy, all of which have compelling evidence of benefit.  The burdens of breast cancer are heavy, the shadows cast long, but there are perfectly accessible - and affordable - therapies to relieve the darkness and allow hope and light to shine through, as I am sure many of your fellow members here can tell you.  And you are  not alone, you have a community with you on the journey.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

bjoangtx

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Reply with quote  #5 
Thanks all;

I was dx stage 2 grade 3 IDC TNBC 1 + node
neoadjuvant TAC x 6 @ 3 weeks
bilat mastectomy 12/11/09
Infection expander removed 12/29/09
Expander Replaced 1/27/2010
Rads 2/24-4/5/2010
Broken Rib 5/2010 w/Reclast for Bones
Basal Type (efgr +)
50% residual tumor after neo-chemoI went to my appts with studies and asked questions all the time. I found then to be evasive.

I did ask about IMN and the radiologist said "Why would you ask that?" It ticked me off. I honestly don't trust him to tell me. I have found out about tests that they have done (a chemo/assay for drug sensitivity) that I only knew about because the insurance company disputed the charge. They tested for 4 drugs the 3 they used and Gemzar and they all came back non responsive.

I am taking wellbutrin and did see a therapist for several months but radiation ate up my finances and I'm not convinced that it made that much difference. My own research shows that starting more than 6 weeks after chem/surg (I was 12 weeks d/t infections and surgeries) and having an interruption of therapy greater than 7 days (the machine in the radiologists office was down for 8 days) significantly reduces the effectiveness of radiation.

Thank you for responding to the IMN question. It's the first answer I've gotten. I understand that there is support here and also at the TNBC Foundation site that often cites you (edge).

Sometimes I look at who I am and wonder who's life did I save anyhow. I am so different tahn I was. So much loss and the only safe emotion I feel anymore is anger.

It's a process I guess.

Joan


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Joan G
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