New Posts New Posts RSS Feed - searching for anyone with no primary site
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

searching for anyone with no primary site

 Post Reply Post Reply
Author
NoPrimarySite View Drop Down
Newbie
Newbie


Joined: Mar 03 2014
Location: Toronto Ontario
Status: Offline
Points: 13
Post Options Post Options   Thanks (0) Thanks(0)   Quote NoPrimarySite Quote  Post ReplyReply Direct Link To This Post Topic: searching for anyone with no primary site
    Posted: May 11 2014 at 9:11am
Happy Mother's Day everyone!

I posted in March looking for anyone who didn't have a primary site identified for their TNBC. I received a number of valuable, insightful replies, and thank you to those members. There was only one member in the same boat as I am, and we are both having to decide what to do.

I've finished my chemo and am facing surgery in two weeks, and still don't know which surgery! The surgeon has laid out my options, but will not recommend one over the other. All he keeps saying is there is no difference in survival rates, once lymph nodes are removed, between radiating the right breast (cancerous lymph nodes were in the right axilla), removing the right breast, or removing both breasts.

I thought I would just post one more time, looking for anyone with an unknown primary, and what choice did you make?

Thank you all.

Jacquelyn

Back to Top
lotusblossom View Drop Down
Groupie
Groupie


Joined: Feb 27 2013
Location: Canada
Status: Offline
Points: 69
Post Options Post Options   Thanks (1) Thanks(1)   Quote lotusblossom Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2014 at 8:13pm
Hi Jacquelyn,

I was diagnosed with unknown primary in 2009. I had mets to axilla, hilar and mediastinal nodes, lungs, spleen, bones, uterus and more...

I was not offered mastectomy as an option since I was stage IV. I was offered chemo to control the disease and radiation to the axilla to ease pain.

I have now been NED since February.

I am not sure if this is the type of story you are looking for...I would be happy to answer any questions.

Lotusblossom

Back to Top
NoPrimarySite View Drop Down
Newbie
Newbie


Joined: Mar 03 2014
Location: Toronto Ontario
Status: Offline
Points: 13
Post Options Post Options   Thanks (0) Thanks(0)   Quote NoPrimarySite Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2014 at 6:08pm
Hi Lotusblossom,

Thank you for answering! Wow, the hell you must have gone through with your diagnosis! This combination of triple negative and no primary is extremely rare. I just have mets to axilla, and they were incredibly painful. I was looking for advice or just to hear from someone else with the same diagnosis. I spent seven hours at the hospital yesterday meeting with two oncological surgeons, my plastic surgeon and my oncologist, and have come up with breast-conserving surgery to both breasts (reduction from my H cup to a C), lymph node removal and then radiation to reduced right breast and axilla. The hope is that future MRIs and mammograms will actually be able to see something in the much-reduced breasts. I've had a good clinical response to the chemo, and  I'm crossing my fingers that I'll have had a good pathological response when they check the lymph nodes.

So I do have some questions, if you don't mind.

Why would you not be offered mastectomy just because you were Stage IV? Just the burden of surgery?

Did you eventually have the axilla lymph nodes removed?

How did you do with chemo? How many rounds have you had?

Did you make any lifestyle changes during your treatment?

How have you continued to put one foot in front of the other all this time??

Is this your first NED since diagnosis?

You must an incredibly amazing woman. Congratulations on surviving, and hoping your NED lasts forever now.

Jacquelyn

Back to Top
lotusblossom View Drop Down
Groupie
Groupie


Joined: Feb 27 2013
Location: Canada
Status: Offline
Points: 69
Post Options Post Options   Thanks (0) Thanks(0)   Quote lotusblossom Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2014 at 8:33pm
Hi Jacquelyn,

I was not offered surgery because of the stage IV diagnosis. I was only offered chemo.

My first chemo was Xeloda and Gemzar, which got the cancer under control. I then went on to use Doxil, Taxol and Navelbine. In all, 174 chemo treatments over almost 5 years. I do not know why, but I was never sick from chemo and have always managed to work, exercise, etc.

I was given 5 sessions of radiation to ease the pain in the axilla. The hope was to stop the node from growing. The radiation was very slow to work but ended up being very successful...the radiation completely eliminated the cancer in the axilla!

As far as lifestyle is concerned, I eat very well, but still cheat with snacks every once in a while. I take vitamin D, omega 3 and vitamin B supplements. I exercise 3-4 times a week doing zumba, spinning, yoga and body sculpting. I try to stay as healthy as possible since my onc is convinced that my heslthy body and strong immune system have made the difference for me.

I put one foot in front of the other by enjoying every moment I can. I do not want to give cancer more room in my life than what it already has. I have become a volunteer speaker with the Canadian Cancer Society and spend time speaking in public about living with cancer as a chronic illness as well as talking about the rights of people with chronic illnesses.

I try to make sure that I am in control of my life with cancer and that cancer is not in control of me.

I hope I have answered your questions.

It sounds like you are being well taken care of by your medical team. That is very important. Remember that we are not statistics! There are more and more people living long and productive lives with this disease.

Lotusblossom
Back to Top
Alexandria View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2014
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Alexandria Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2014 at 12:54am
Hello, I am new to this forum.  I have been diagnosed with Invasive Carcinoma (Triple Negative.)  What makes my situation unique is mine was discovered by biopsying-swollen lymph nodes under my arm, 3 to be exact. It was confirmed the 3 lymph nodes were carcinoma cancer.  The next step was to find a primary source with a focus on the breast being the most obvious.  Scans of the breasts were done. (Ultrasound, mammogram, and MRI, none of these revealed the breast being a primary source.) A PET/CT scan was ordered and perform.  The 3 biopsied lymph nodes did light up as expected in the PET scan.  Nothing else lit up detecting cancer.  They did see a very small breast nodule, but it did not light up to indicate cancer. However, being so diligent to find a primary source they wanted to biopsy the breast nodule.  During the biopsy it was so small they inserted a marker so it could be found later. The breast nodule came back exactly like the 3 lymph nodes: Carcinoma, Triple Negative. 

Has anyone else experienced a breast cancer diagnosis thru the lymph nodes 1st? The lymph nodes are screaming cancer and yet the breast node was almost silent and non-existent. It doesn’t make sense to me that the breast is considered "primary" and not the other way around (Lymph Nodes: Lymph Cell Carcinoma) especially since all breast cancer markers are triple negative.  Also, on a side note: A solid lymph node was detected in the lower abdomen on ultra sound only, not on PET/CT.  It will be discussed at the tumor board what to do next. 

Please let me know if anyone else is in this situation and share your experience.  Thank you.

Back to Top
NoPrimarySite View Drop Down
Newbie
Newbie


Joined: Mar 03 2014
Location: Toronto Ontario
Status: Offline
Points: 13
Post Options Post Options   Thanks (0) Thanks(0)   Quote NoPrimarySite Quote  Post ReplyReply Direct Link To This Post Posted: Jun 28 2014 at 5:45am
Hi Alexandria,

Thank you to Donna for pointing you in my direction. I am TNBC with no primary site too (dx in December 2013), and I was desperate to find others with the same diagnosis. I found three other women on this site, and none on a number of other sites and forums where I searched.

Here is the link to my first post desperately seeking someone else with no primary site—this is where I found Debtm, the first TNBC with no primary whom I'd met! The story of my diagnosis and all the testing I had trying to find the primary is in that string of emails: http://forum.tnbcfoundation.org/no-primary-site_topic11882_post120489.html?KW=#120489


So that is four of us!

Like I said, my story is in those two email postings, but I'll add a bit here. I found five huge lymph nodes in my right armpit, and they hurt like crazy. Despite all the testing, no one could find a primary. The reason that a cancer in the breast would be considered the primary, and the lymph nodes would not be considered the primary is because that cancer found in the lymph nodes is metastasized breast cancer. The primary for our lovely TNBC was likely a tiny but vicious and very aggressive "mother," who shot out "daughters" that raced through the lymph system and landed in the closest ones—the axilla nodes. It is possible by the time our testing started to locate the primary, it was already dead and gone.

I too had an enlarged interpectoral lymph node, Rotter's Node, that was discussed at my Tumour Board too (my oncs said my TNBC with no primary site case was discussed so much at Tumour Board it was weird when it didn't come up one week!). It will be getting radiation with the rest of the rads to breast, axilla and supraclavicular nodes.

So far I have had eight rounds of chemo, dose-dense, four of doxorubicin-cyclophosphamide, four of paclitaxel. Then I spent five weeks freaking out about what surgery to have, since having no primary means a lumpectomy is like an inside unfunny joke. I went for a partial mastectomy of the right breast, leaving the nipple intact, and a reduction of the left breast to match the right. All removed tissue went to pathology. I went from an H/I cup size to a C/D. The surgeon removed 15 lymph nodes for testing. My report showed that I had a complete pathological response to the chemo (yay!). Now I will have 25 rounds of radiation, starting within the next week.

I hope this helps.

I am very new to this board as well, but I think I will try adding all of us on my buddy list so we can compare notes.

Ask me anything. And if you want to read more, please visit my progress blog at Itsbecauseisaidso.wordpress.com
Back to Top
ckrose View Drop Down
Newbie
Newbie
Avatar

Joined: Jul 01 2014
Location: Ohio
Status: Offline
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote ckrose Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2014 at 8:18pm
I have a CUP. Cancer of unknown primary. My mets were to the thyroid. The tumor was sent to three different pathologist to confirm TNBC.
Back to Top
Alexandria View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2014
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Alexandria Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2014 at 7:45pm
Thank you for response, our cases seem very similar. My treatment plan has been changing by the minute. I was scheduled for what I thought would be a double mastectomy with node disections only to find out they were only going to take the R breast and nodes for now.  They did not want to take the L breast (at this time) fearing surgery complications could delay Chemo. I only want 1 surgery, so I cancelled and decided to do Chemo first.  They will do a double mastecomy after Chemo treatments.

I got my port placed last week. The actual surgery went well, but I ended up vomiting for about 12 hours. In addition one of my incisions is above the L breast and the weight on this breast is pulling at my incision...wearing a bra helps...but I do not want to wear a bra 24/7.  I am having various pains in my chest, jaw and back.  When I take deep breaths or laugh (yes, I do laugh with cancer..lol) I notice slight chest pain, the pain is tolerable but does not seem right.  I have a call into my MD.  Due to the complications of the port, we decided to postpone Chemo by 1 week.

I have accepted my cancer, but I am having a really hard time accepting Chemo.  I have always been very sensitive to chemicals and my body rejects them.....thus the vomiting from the port surgery.  My gut tells me Chemo is not for me, I fear death from Chemo and/or long term illness.  I feel really good right now and I am enjoying my life.  I feel as soon as I start Chemo this will be the onset of my demise. Has anyone with TNBC, ever not done Chemo or delayed it? With the exception of one node the size of a quarter (not even painful) I am Asymptomatic feeling great!  I do not want to start Chemo and start feeling bad...when I feel so good.  Any thoughts...
Back to Top
Alexandria View Drop Down
Newbie
Newbie
Avatar

Joined: Jun 20 2014
Status: Offline
Points: 5
Post Options Post Options   Thanks (0) Thanks(0)   Quote Alexandria Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2014 at 7:51pm
PS I love your blog!
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1088
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2014 at 11:22pm
Alexandra, check the archives on the subject of those not doing chemo. I know it has been a subject in the distant past. I am not computer adept enough to find them for you but they are there.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
Back to Top
clicrowley View Drop Down
Newbie
Newbie
Avatar

Joined: Sep 07 2009
Location: olympia, WA
Status: Offline
Points: 12
Post Options Post Options   Thanks (0) Thanks(0)   Quote clicrowley Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2014 at 1:50am
I was one to skip chemo, only surgery and radiation almost 5yrs ago. I will say it was a hard decision.
Wish could say more of my choice because it been on my mind a lot. I was just had a biopsy last week on my chest wall and it was positive, for now on to more test for me
TNBC Stage1 Aug09, lumpectomy sep09, neg nodes, no chemo only radiation, BRCA1+
Back to Top
MLindaG View Drop Down
Senior Member
Senior Member
Avatar

Joined: Feb 16 2013
Location: Pittsburgh PA
Status: Offline
Points: 380
Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2014 at 9:10am
Alexandria, I just saw your post and while I did have a primary I can relate to your reluctance as to Chemo. I too felt fantastic when my cancer was found......I had just lost 47 lbs.....had the best blood work in 5 years with my A1C being perfect and blood sugar fantastic one month before my cancer diagnosis. I was in disbelief but could not deny the obvious lump in my breast at my mammogram.....I was born with only one kidney and one adrenal gland. Have numerous allergies to many meds.....problems with pain killers not working......difficulty handling steroids.....Needless to say I was upset with all the tests with contrast (didn't have a problem).....then the premeds and chemo....when others talk about working while taking chemo....I could not have done that. They hit me hard with lots of se. That being said the oncologist office welcomed my calls and I ended up on 4 different antinausea drugs while on A/C. Did not need any of them on Taxol. You just go one day at a time and realize this will pass and before you know it your done with it all. I now look back 2 years later and wonder how I did it. Chemo did do it's job as I had a cpr and I'm doing great again! Just cheering you on as you journey through chemo!! You can do it!!!
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.