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Diagnosed With Metastasis Scared/Overwhelmed

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: TNBC Metastasis/Recurrence Users
Forum Description: A place to discuss metastatic disease
Printed Date: Aug 23 2019 at 6:31pm
Software Version: Web Wiz Forums 12.01 -

Topic: Diagnosed With Metastasis Scared/Overwhelmed
Posted By: mehitzel
Subject: Diagnosed With Metastasis Scared/Overwhelmed
Date Posted: Mar 28 2010 at 12:30pm

Hi, everyone.  I was diagnosed with triple negative breast cancer in November 2008.  I'm sorry this will be a bit of a long note.  It's been a long 16 months!  There's always been some question as to whether or not it was inflammatory breast cancer or locally advanced breast cancer.  I had two treatments of Adriamycin/Cytoxan and then developed a tender cord under my left arm, so my doctor added taxotere to the next two chemo doses. 

At that point I switched my care to the cancer center in Tucson (I live in Phoenix) because I was very unhappy with my original doctor.  I felt like one patient on a conveyor belt of patients.  It is in Tucson that I was told they thought my bc was locally advanced versus IBC.  My doctors there felt I had not responded to the above treatment and I started a 16 week course of Abraxane weekly and Avastin every other week.    

I then had a double mastectomy, prophylactic on the right, and lymph node dissection on the left.  There was no remaining cancer in my breast at the time of the surgery, however six out of six lymph nodes were positive.  After recovering from the surgery, I had 33 radiation treatments and was on 1000mg of Xeloda at the same time.  My skin burned pretty badly from the radiation and my mastectomy incision on the left opened up.  I had to have a latissimus muscle and skin graft done to repair the damage. 
Once I healed from that surgery, I started a course of Navelbine every two weeks and 1500mg of Xeloda, two weeks on, two weeks off.  This was administered by a local oncologist so that I could continue working.  I finished this course of treatment the end of January.  At the beginning of January I had a Cat scan. The report stated I had two vertebrae with areas of possible suspicion for sclerosis.  My oncologist in Tucson looked at the films at the end of February and didn't feel like the spots were cancer, but told me to get an MRI at my convenience just to confirm.  I had that done over spring break and got the results Thursday and had a brain and cervical spine MRI on Friday to confirm.
I have an 8x7mm lesion on my spinal cord at the level of C2 and areas of bone metastasis on numerous vertabrae along my spine. 
I went for my planning session for radiation to the lesion on my spinal cord Friday afternoon, will have the trial run on Tuesday and start treatments on Wednesday.  I go to Tucson tomorrow to see my oncologist and make a plan as to how to treat the bone metastasis. 
I am also having a lot of difficulty breathing, coughing a lot and getting very short of breath with any exertion.  My radiation oncologist is not sure what the cause of this is.  It is possible that the lesion on my spinal cord is effecting the nerves that control my breathing and if that is the case he say it should get better as the lesion shrinks.  I've also had pleural effusions in the past that caused shortness of breath and my scan did show moderate pleural effusions bilaterally, so that might be the cause, though my shortness of breath is much worse this time.  And, of course, there is the possibility that the cancer is also in my lungs.  I'm thinking/hoping my oncologist will order a chest CT scan tomorrow to give us a more definitive answer.
So, I guess I am just asking for advice.  I'm having a hard time thinking clearly right now.  What questions should I ask? Have others been in similar situations and what treatment did they recieve?  Any advice/information you have to offer would be greatly appreciated.

Posted By: dmwolf
Date Posted: Mar 28 2010 at 5:00pm
Martha, boy have you had a time of it.  What a lot of cancer news and treatment over a short period of time.   I'm sorry this has been so hard.  And how strange that the chemo did such a great job on the breast tumor but didn't wipe out the lymph ones.  Disappointing.  I guess the cancer mutated significantly before establishing residence in the nodes.  Through it all, you sound remarkably emotionally balanced.  How have you been coping? 

As for advice, first off, it sounds like you've been getting very good care ever since the switch.   Beyond that, I'm wondering whether you have looked into platinum drugs like carboplatin, and/or PARP inhibitors.  The combination gemzar/carbo + parp inhibitor has been effective for lots of women.  Do you know whether you are BRCA+?  If so, PARP inhibitors are likely to work very well. 

For the breathing difficulty: it really could be the pleural effusion, especially if you have them on both sides.  Have you had them drained?  Has anyone talked to you about doing a talc pleurodesis - a procedure where a substance like talc is added between the pleural membranes to create scarring and essentially 'seal' them together to keep fluid from accumulating?  That can help a lot.

Please lean on us as much as you'd like.  We're here for you.  Please let us know how your CT goes.

Much love,

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.

Posted By: mehitzel
Date Posted: Mar 28 2010 at 10:40pm
Thank you so much, Denise for answering my post.  I have read here on the list about the gemzar/carboplatin combination and the Parp inhibitor trials.  I checked out the government clinical trials website and didn't see any trials that are currently recruiting.  I'm thinking my doc will be recommending the gemzar/carbo combination, but am nervous because it seems like for most of the trials, you are excluded if you've had these drugs previously.  However, I also know that I will need to get started with my treatment pretty quickly.  I went from two "suspicious spots" in January to having it all up and down my spine two months later and who knows where else it might be because they haven't looked anywhere else yet.  Confused
Something else I'm wondering about.  Do you know if people can be being treated with radiation, like I will be for the lesion on my spinal cord, and also be recieving aggressive chemotherapy?  I know the lesion on my spinal cord could become life-threatening if it isn't addressed immediately, but I'm also worried about what the cancer will be doing in the rest of my body if I have to wait another month to start it.
Anyway, I guess I will have more information/answers tomorrow.  I mostly wanted to say thanks for writing back to me.

Posted By: SagePatientAdvocates
Date Posted: Mar 28 2010 at 11:11pm
Dear Martha,

I am so very, very sorry you have been through and are going through such an ordeal...

I am not a doctor but I think it may make sense for you to consider a second opinion.

My first choice would be MD Anderson in Houston. It has consistently been ranked the number one cancer center in the U.S.

If it is not feasible for you to travel for whatever reason I would suggest the Mayo Clinic in Scottsdale.

please know that you are in my prayers...


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates

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