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BornInWA

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I had a CT scan a few weeks ago that showed a 3.2 x 1.9 cm mediastinal mass with 2 lymph nodes involved in my anterior mediastinum.  I can't find any helpful information online about metastasis to that area.  I had a find needle biopsy done today and won't have the results back from that for several days.  My oncologist originally told me that the mass was in my lung but they showed me the CT scan report today and it was not in my lung but in my anterior mediastinum. The radiologist confirmed that the mediastinum was the correct location.  I'm a little peeved with my oncologist for giving me incorrect information but that's another matter for another day.  My oncologist ordered a chest and abdomen CT done as well as a bone scan.  I only had the one mass that show up.  Bone scan and abdomen CT were negative.

My background is: DX of triple negative breast cancer IIB to left breast with sentinal lymph node positive, modified radical mastectomy 12/06 followed by TAC x 6 every three weeks then radiation.  Finished July 3, 2007.  Tumor markers were going up over the last six months so my oncologist ordered a PET/CT but my insurance company wouldn't pay for it so I had chest and abdomen CT (1/30/09) as well as a bone scan (2/9/09).  Got CT and bone scan results on 2/12/09 with a CT guided fine needle biopsy on 2/23/09 for what I thought was a lung mass but was actually a anterior mediastinal mass with 2 involved lymph nodes. 

Can anyone help me with this?  I'd appreciate any information that I can get.

If Edge could chime in that would be really, really great.

Jeann46

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Reply with quote  #2 
When my bc recurred in Dec. '05, it presented itself in two rib bones and soft tissue in and around my implant and in the mediastinum. So, yes, it can recur there. Make sure, when the needle biopsy is done, that the tissue is sent to pathology for study (ER/PR and Her/2 status). My recurrence was detected from a PET/CT scan, and then followed with a whole body bone scan that confirmed the rib involvement on the Pet/CT. A rib resection confirmed that the cancer was recurrent from breast primary.
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Reply with quote  #3 
Thanks Jeanne,

I have no idea why he didn't do a head CT.  He tried to tell me it was because I wasn't having any symptoms but I find that a crappy excuse.  I wasn't having any symptoms of any kind anyway and he was doing the CT's and bone scan because of elevated tumor markers.  Ugh!  I'm so frustrated!

Beth

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Reply with quote  #4 

BornInWA:

 

Since a mediastinal tumor is a tumor with a locus in the lung cavity, that is, the mediastinum or cavity area between the lungs (between the sternum and the spinal column), your oncologist may have been speaking loosely and inadvertently conveyed the wrong sense, of a lung tumor rather than a lung cavity tumor.  The mediastinal space ("mediastinum") or lung cavity area contains (1) the heart, (2) the aorta, (3) the esophagus, (4) the thymus and (5) the trachea, and the type of tumor is variant with the location, whether anterior (front) mediastinal, posterior (back) mediastinal, or middle mediastinal. 

 

If yours is indeed anterior mediastinal, then the tumor may be (1) germ cell, (2) lymphoma, (3) thymoma, (4) or thyroid, and most (but not all) germ cell tumors, thymomas (like a thymic cyst), and thyroid tumors (like a goiter) are benign, while lymphomas are malignant.  The precise tumor type won't be known until the biopsy results are back, but note a couple of things:

 

  1. Although a non-breast tumor is possible anywhere, there is no particular association between triple negative breast cancer in particular and mediastinal tumors, benign or malignant;
  2. For any breast cancer, not just TNBC, there is a very small chance of mediastinal spread from the breast cancer itself, like the rare Breast-Esophagus Syndrome documented by Sabrina Rampado and colleagues in Padova, involving metastatic esophageal involvement from breast cancer, usually via lymphatic spread (through what's called the intercostal vessels) reaching the internal mammary chain (IMC) and the mediastinal lymph nodes, the key presenting symptom being in some minority of cases, worsening dysphagia (and sometimes dysphonia (hoarseness)), although most esophageal or mediastinal metastases from breast cancer stay  asymptomatic until late. 

 

The most definitive diagnosis comes from minimally invasive exploratory thoracoscopy (endoscopic examination of the pleural cavity), but in the hands of an expert, EUS-FNAB is a valid alternative (EUS-FNAB is EUS-, that is, endoscopic ultrasound-guided, fine needle aspiration biopsy).   So let's see what the biopsy tells us.

 

Hope this helps clarify matters. 

 

An Ultra-Brief Tutorial on Health Search

One final suggestion: in doing a web search, avoid relying on Wikipedia entries on health, as they are typically inaccurate (Wikipedia entries are often unfortunately one of the first returned by Google).  Preferable would be sources like Cleveland Clinic Health Information, or NIH's MedlinePlus Medical Encyclopedia.  As to health search engines, most are indifferent but I would suggest the high-quality, NCI/NIH-developed Healia for authoritative, vetted information (and it never returns Wikipedia entries).

 


Constantine Kaniklidis
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edge@evidencewatch.com

BornInWA

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Reply with quote  #5 
Thank you Constantine!

I know that sometimes doctors want to simplify things for us and sometimes it doesn't translate too well.  I would have thought that he was just trying to make it easier for me to understand too if he had not clearly said that the mass was in the "upper lobe of your lung".  I had a friend of mine that is a nurse come with me to the appointment and take notes and I confirmed with her that is what he said.  He knew she was a nurse and when she asked him to confirm that it was in the lung he said yes.  Also, when I had the CT guided fine needle biopsy done the radiologist and nurse were both puzzled that the order that came from his office said "lung" biopsy. 

I would have high hopes that it may be benign but there were a couple of lymph nodes (largest being close to 1 cm) involved as well so I remain very cautiously optomistic.

While I'm not a medical professional nor do I have any medical training, I did work as a medical records clerk at a large clinic in Seattle for several years and picked up some medical vocabulary which has proven very helpful in understanding a lot of what I read. 

Thanks so very, very much Constantine.  I appreciate your time.  Consider yourself hugged.

Beth

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Reply with quote  #6 
I just got a call from my oncologist.  The biopsy of the mediastinal mass and two positive lymph nodes came back positive for recurrence of my breast cancer.  I have an appointment with him on Wednesday to discuss what comes next.  I also called and made an appointment for a second opinion with one of the doctors at Moores Cancer Center at UCSD.  I'm going to pick up a copy of my records from my current doctor and take them over to UCSD as soon as I can.  I'm hoping that she can see me sooner than my scheduled appointment on March 22nd.  I don't want to wait more than three weeks to get started with something.  I wasn't feeling too good today and have been having a strange pain in my ribs on my left side. 

If I really like the doctor at UCSD I may just switch to her.  I feel like they have a more comprehensive practice there and a lot more resources.  It's a longer drive but worth it if it means better care.

I know that a recurrence as a mediastinal mass is not common so I feel like I'm just twisting in the wind a little bit.  Scary, scary, scary.  Any encouraging words would be very much welcome.

Beth
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Reply with quote  #7 

Beth:

 

Mediastinal recurrence is a subset of thoracic metastasis from breast cancer ( which includes extrapleural metastases, mediastinal tumor, lymphangitic carcinoma, pulmonary nodules, solitary pulmonary nodule, and endobronchial metastases), and is treated as with other types of breast cancer spread, so let's see what the oncologists say, but as the early Harvey Kreisman (McGill University) study showed - reviewing 119 cases of breast cancer thoracic metastases including 46 patients with BC mediastinal tumors - prognosis is not necessarily compromised especially with early diagnosis and small tumor burden, and systemic therapy (based on tumor biology and pathology) is indicated, optimized for  triple negative disease which would be the standard of care for TNBC in any case, and dependent on placement and other factors, surgical intervention may be viable.

 

It's prudent to get a second opinion, and you're right that UCSD has some fine breast specialists like Barbara Parker at the Moores Cancer Center, the current Medical Director of Oncology Services and an active CALGB (Cancer and Leukemia Group B) trial investigator, but there are many others. 

 

So this is still a time for information gathering and for exploring best resources and you know you have the support of this No Surrender community with you through the journey.

 


Constantine Kaniklidis
Breast Cancer Watch
edge@evidencewatch.com

BornInWA

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Reply with quote  #8 
Thank you Constantine, 

This next week I have an appointment with my oncologist as well as another oncologist that was recommended to me by Dr. Anne Wallace (who was going to do my reconstruction surgery before they discovered my mets.) Dr. Wallace is both an Oncologist and a Plastic Surgeon who specializes in breast reconstruction who also works out of Moores Cancer Center and (I think) San Diego Cancer Center.  She recommended Dr. Rupa Subramanian who is also at San Diego Cancer Center. 

As with most of us here on the forum, I have those optomistic moments as well as the pessemistic ones.  I've done some research on the role of diet in the fight against cancer and feel better that I've improved in that sense.  I'm taking a moderate approach when it comes to supplements.  Just the basic vitamins (a good multi and of course fish oil) and staying away from refined sugar, flour, dairy, not so healthy fats and such.  Lots of greens, whole grains, fruit and some fish etc.  I've lost almost 10 pounds and feel really great.  I know that chemo isn't fun but it's tollerable and I know from experience that it's possible to keep working and taking care of my kids through it all. 

Thank you so very much for your encouraging news and support.  It's just another part of the arsenal to help me in this fight and I appreciate it more than you can possibly know. 

Hugs,

Beth

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Reply with quote  #9 
Dear Beth -
 
Just reading your posts tonight, and Edge's replies -
 
Many blessings as you deal with this one day at a time.  We are so fortunate to have the resources that Gina and Edge provide- what a lonely and archane struggle this would be for me without them. 
 
Glad you are diong well with the diet change - I am still struggling with "the whites" - and sipping a Bass ale with glutamine in it!
 
A big hug for you - Mary

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BornInWA

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Mary,

Thanks so much for the response.  I had to take an evening off from the new diet for a great dinner party with some friends last weekend.  I think the laughter we all shared may have counteracted any fat, sugar and alcohol excesses.  It was certainly worth it in that it certainly felt good to laugh so hard and so much.  I was promptly back on the healthy food wagon the next day.

Now I'm trying to find creative recipes using agave nectar. 

I hope your week is going well.

coco

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Reply with quote  #11 
Hi Beth,

Like Mary, I am catching up with your posts and want to wish you the very best as you move forward with the next phase of treatment. You sound strong, determined and ready to kick butt! I also want to encourage you to follow your instincts in selecting -or switching to- the best possible docs you can find; I believe you will be repaid many times over if you do. I've been scolded for switching myself, but now I've got a team I trust and I know they care about me as a person, not just as patient #XYZ. If only they could all be as responsive, respectful and caring as our Edge...

Good luck and {{{BIG HUGS}}} to you!

Coco

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BornInWA

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Reply with quote  #12 
Coco,

I know that my current oncologist is closer and more convenient but I'm not feeling like he is the right doctor for me.  I'm not content to be in the back seat when it comes to my care.  I hope that tomorrow goes well and getting this second opinion only serves to confirm what I already feel.

Hugs back to you!

Beth

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Reply with quote  #13 
Beth, I am so glad you are following your instincts.
I hope your new doc is more proactive for you.
There are docs who give a treatment plan to local docs to follow so you don't have to travel as far.
There was a woman in my chemo group who drove about 2-3 hours to see my onc. But when she had to get weekly treatments, she went to someone who was local and he followed her treatment protocol that our onc had given her.
Good luck today!
hugs to you
g


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BornInWA

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Reply with quote  #14 
Hi all!

I had a really positive appointment with Dr. Subramanian.  I'm going to switch my care over to her.  She's much more proactive and seems to be better versed on what's new in the land of triple negative metastasis treatment than my old oncologist.  I absolutely feel that switching to her is the right thing for me.  They also offer other services at her office such as access to a nutritionist along with massage therapy, Craniosacral Therapy (I have no idea what that is), acupuncture, biofeedback, reiki, hypnotherapy, qigong, somatic experience, yoga and even "Tibetan Bowl Sound Energy Healing" (I definately need to look that one up too.)  She's also going to get me in for a PET/CT (my other oncologist wasn't able to do that) as well as sending a tumor sample to Response Genetics to see if the tumor is sensitive to Carboplatin. 

I'm feeling more hopeful than I have since I got the crappy metastasis diagnosis.  Thanks for being there for me Gina, CoCo, Mary, Jeann and Constantine!  I get my port put back in next Thursday and I already have an appt with my new onc on the following Monday!  Forward march, and off I go to do battle. 

Hugs and more hugs,

Beth



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Reply with quote  #15 
Oh, and it's only another 15 minutes away.  Not a bit deal when it comes to distance.  My old onc was maybe 2 miles from my work so it was super convenient.  Now I'll have to drive just a little bit further but still definitely doable.
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Reply with quote  #16 
Beth that is great news!!
I am SO HAPPY you like her and she is as big a fighter as you are.
One thing I love about my onc is he always says, "we are shooting for a cure"- I like that attitude much better than one that says, "well, let's give this a try and see if it works..."

I like all the extra things they offer at your cancer center- cool!

Good luck with the re-port.
Hugs to you
love
g


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BornInWA

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Reply with quote  #17 
So the good news is that my PET/CT didn't show any more mets other than the one spot that I knew about before and the tumor in my mediasteinum hasn't grown but it looks like I have a few more lymph nodes involved.  

I started chemo on Tuesday.  I have Taxol and Avastin weely.  I can't remember how many rounds of Taxol they are going to do but I think it's maybe 8.  I will be seeing my onc next Tuesday when I get my next chemo.  I was a little tired yesterday but I feel better today. 

Right now I'm stuffing down my oatmeal and tossing back my supplements with a chai tea chaser.  YUM.

Many hugs to you all!

Beth

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Reply with quote  #18 
Beth,
hugs to you!!!

I keep you in my prayers.

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Reply with quote  #19 
((Beth))
So sorry about the new nodes- but it sounds like you are stable in the other areas- that is good! May this new combo take care of those new nodes ASAP

Take care of YOU.

Love
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