A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Apr 24, 2009 02:07PM
Hello. I am new to the forum. I thought I would share my story. Eleven years ago at age 33 diagnosed with Stage 2 breast cancer. I opted for bi-lateral mastectomy as I am third generation of pre-menopausal breast cancer. I had 6 months of chemo and 5 years of Tamoxifen. Every thing has been going fine and had a clean bill of health in Oct 2008. In Nov, I developed a cough that would not go away. By Christmas it was getting worse and I finally went to the primary care dr. in January. Chest x-ray and Cat Scan showed that I had fluid build-up in plueral cavity due to a paralyzed diaprhagm. I had fluid drained in Feb. and felt good for a week before cough and shortness of breath returned. Another visit to oncologist in Feb. and had a PET scan. The scan showed three spots; one on the phrenic nerve which starts in disk C3 and ends in the diaphragm, the second on my lung, and third on my clavicle. I had a chest tube inserted to drain fluid, plueral and lung biopsies done. Diagnosis is metastasized breast cancer in those three spots. I was told that my best treatment option will be AI Arimidex. I have to be put into menapause first so I am having ovaries and f. tubes removed next week. I have been on Tamoxifin since the dianosis three weeks ago. My oncologist does not think that chemo would be beneficial at this time. He is giving me three months on the Arimidex to see if the spots shrink. If PET scan does not show improvement in three months, I will start chemo. Now that the initial shock has work off, I am handling this a bit better. I just can't believe that this beast is back after 11 years. It was the last thing I even thought of when I began coughing back in November. Thanks for listening.
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Posts 1 - 20 (20 total)
Apr 24, 2009 02:19PM shorfi wrote:
I'm sorry. You will be in my thoughts and I hope that the Arimidex will work for you.
Apr 24, 2009 02:32PM Alpal wrote:
So sorry about your bad news. Just wanted to share that Arimidex is working for me. I did have chemo (TC) and responded beautifully. My TMs have continued to drop since starting Arimidex. Does cause some aches and pains, but as long as it is working I'll deal with those. I'm almost a yr from diagnosis and my QOL is great - there IS life after a stage IV diagnosis.
Apr 24, 2009 02:50PM nash wrote:
Sorry to hear about the mets--that sucks. I see you're HER2+; is the onc going to also put you on Herceptin?
Apr 24, 2009 03:24PM lkc wrote:
PLEASE ask about Herceptin. Studies have shown great benefits after progression.
Also, why not Abraxane too?That RX is normally indicated with Diagnosed lung mets from BC.
Please be assertive in your tx. Don't wait a couple months.
You are young and probably can tolerate a stronger tx. and HER pos BC mutate quickly.
Please be your own advocate.
Apr 24, 2009 03:33PM Analemma wrote:
Coffeegirl, can I ask about the paralyzed diaphragm and phrenic nerve? I have that, too, and none of my drs will say it was caused by the cancer, yet the diaphragm became paralyzed in the interim when I was complaining of being unable to breathe, and the dumb dr was treating me for asthma. My mets were nodes in the mediastinum, and nearly two years later I still have the paralyzed phrenic nerve. I'm told that function probably won't come back. It makes me really uncomfortable. Have you still lost your diaphragm function?
Apr 24, 2009 09:22PM pitanga wrote:
I am so sorry to hear what you´re going through. And believe me I can relate. At the end of January I was diagnosed with a local recurrence. It was 9 years after treatment for stage II at age 39. Around 7 years NED I had finally started to lose the feeling of impending doom that came over me every time I went for a checkup. This year they said the mammo looked a little iffy and it would be good to get it biopsied. I was convinced everything was just fine... what a rude awakening to get the results. when I had begun to adjust, wham! they found a metastasis to my spine (C6-C7). I started Zometa in early March and had a mastectomy a few weeks later. Next they want me to do chemo, followed by rads to the metastasis.
To make a long story short, I know how it hurts to be shoved back into this miserable fray.. words cannot describe. So all i can say is, be strong when you can, let yourself cry when you need to. By posting here you have come to a very good place. I have learned so much --and continue to learn-- from the ladies here.
All my best to you,
Apr 25, 2009 07:11AM Coffeegirl wrote:
Analema, the pet scan showed a spot on the phrenic nerve. The doctors believe that the diseased phrenic nerve caused the paralyzed diaphragm. The symptoms began with shortness of breath and a nagging cough in November. My biggest problem was that I had fluid building up in the plural cavity causing difficulty breathing. This was seen in chest xrays & cat scans. In January I had a thorenthentisis (sp) to drain fluid (about 70 ccs) that had been building up in the plueral cavity. The paralyzed diaphragm is flopping against my left lung causing the lower lung to not fully expand and therefore allowing any fluid to stay in the plueral cavity. The fluid began building up within a week and it was decided to insert a chest tube and do a procedure called a Pluradisis. I had a chest tube inserted and they drained about 3 liters of fluid in 5 days. I then had the Pluradisis done, a medicated talc is inserted through the chest tube which becomes like super glue and the left lung was glued to the chest wall eliminated the space for any fluid to build up in. The tube was left in another 5 days. The biopsies were also done at this time and the surgeon found he could not remove the tumor on the phrenic nerve because it was wrapped in blood vessels. But the biopsy showed a malignancy. I was told even if the tumor is shrunk in the nerve, the diaphragm will not work again. The damage has already been done. I was told that I have a 75% chance that the lung will stay put and that I will not need this done again. I guess overall those chances are pretty good.
Apr 25, 2009 07:20AM Coffeegirl wrote:
Thank you Linda for you advice. I have a followup with the oncologist coming up and will definitely ask about the Herceptin and Abraxane. I definitely agree about being your own advocate. Eleven years ago when I found the lump on my breast, I had an ultrasound. The radiologist stood in the room with me and said that he had seen alot of cancer in his years of being a rad. and he was pretty sure I did not have breast cancer. I met with the breast surgeon and told him that I did not want a needle biopsy and that I wanted him to do a surgical biopsy. Guess what, 2 1/2 cm tumor, aggressive stage 2 bc. Good thing, I did not listen to the radiologist who knew what bc looked like! We know our bodies and we know when something is not right. Thank goodness my doctors feel that way too and really listen when I tell them that something feels off.
Apr 26, 2009 05:22PM mmdj43 wrote:
I'm not new to this site, but new to this particular thread. I was diagnosed with Stage II IDC mid-February but after other tests/biopsies and 2 weeks later, my final diagnosis came in as Stage IV with metastisis in the spine (between C4 and C5; one 1.1cm). Cat scan also picked up 3 very tiny spots in the liver but they did not attempt to biopsy that because they didn't think they would be able to get a sample. Nevertheless, my Onco said it didn't matter to really attempt that since I was already at Stage IV with the spine. Anywho, first line of defense is TCH x 6 with Herceptin weekly as well. Altho i was told getting Herceptin weekly is no more effective than every 3 weeks. So i told my Onco i'd like to get the Herceptin with my TCH every 3 weeks. On the other hand, i'm hearing many have had some heart funciton issues getting Herceptin weekly, so I'm going to ask my Onco about that as well.
In the meantime, pitanga, just curious as to why your doc recommended a masectomy before doing chemo. I'm starting out with chemo, then who knows afterwards but I'll find out soon enuf i'm sure. Also, i've heard many were given Zometa for the metastasis to the bone, but I asked my Onco about that and he said that Zometa can also cause some long term effects (not exactly sure what they are yet). But I'm going to ask my Onco again because I'd hate to think that I may be worsening the strength of my bones without it.
Well, looking forward to chatting with all of you warrior ladies!
Apr 26, 2009 11:44PM jolimo wrote:
I know how you must feel. I had the chemoand tamoxifen for five years and in my sixth year the cancer returned. I was diagnosed as well with stage IV except that it spread to my bones. I am taking Arimidex, Zometa and Lupron. I have spots on my spine and others areas on my back. I take everyday as a blessing. You have faught it this long, so I know that you can do it again.
Apr 27, 2009 07:05AM pitanga wrote:
I think it was a combination of factors. first being that the metastasis was discovered while I was already in the midst of planning the surgery, and it wasnt completely conclusive as to whether it really was malignant or some benign degeneration of the bone and disc (I have lots of arthritic things going on in my spine which apparently look kind of similar on MRI), so they did not want to delay the surgery while this was being checked out. But they did start me on Zometa right away. I am thin and my bone density is kind of borderline anyway so I figured that a couple of Zometa infusions could be beneficial even if the spinal thing did turn out to be benign. Which unfortunately it didnt.
They didnt specifically tell me but i think the idea of having the surgery first also had to do with wanting to find out the characteristics of the tumor cells for planning the chemo. Since recurrences can be different from the original tumors. In my case the recurrence turned out to be HER2 +, although the original tumor wasn´t, so Herceptin will be part of my current treatment.
Apr 28, 2009 12:47PM lkc wrote:
Just checking in on you. Glad to hear you are going to follow up. You are absolutely right about us knowing on our bodies best. I was dxed May 05 with stage IIIC ( after being advised I was probably a stage I )I am still hanging on tight and I am always pushing my docs,
Apr 29, 2009 11:21AM MJLToday wrote:
I hope the Arimidex works for you as it is working for me. I was dx'd at 34, 10 years NED, now on just Arimidex & Faslodex.
I second the recommendation to ask about Herceptin also. It seems to have less SE than regular chemo.
Apr 29, 2009 07:29PM - edited Apr 29, 2009 07:39PM by Reneepals
Zometa is an excellent treatment that not only helps rebuild the damage that cancer has done to the bone's, but it also has been shown to help stop metastasis. The infusion itself was tough on me at first, but my doc tweeked it and gave it over a longer infusion time and gives me benadryl. My worst s.e. Flu like symptoms for a day or two. The only really serious side effect, is ONJ which is not common, other than that it is a breeze. Most big city Oncologists for lack of a better word prescribe it. It has become a standard of care in the States.
Hi, so sorry about the Mets it suck's, period. Arimidex is a very tough drug used to fight cancer with Er+ breast cancer. My treatment is Femara, Lupron & Zometa. By the grace and favor of God the cancer that was on my Liver, is gone! After four month's of treatment. So do not be to quick to think about chemo. My Onc watched me very closley with scan's & tumor markers. which is pretty much protocol.
May 13, 2009 10:32AM Coffeegirl wrote:
I am checking in after just undergoing my profolatic (sp?) oopherectomy. I was very fortunate that the gyn. was able to perform the surgery laproscopicly to remove the ovaries and fallopian tubes. It is a week today and I am feeling very strong with very little pain. I had a followup yesterday with oncologist to get final path results from last week's surgery and March's plural biopsy report. I find out that my FISH showed that I was HER2- so I am not a candidate for Herceptin. The ovaries and endometrial lining were negative for any positive cells. So for right now I will stay on the Arimidex for two months and then do a Pet scan in July. We are hoping to see shrinkage in the three spots. If no shrinkage, then I will start Chemo in July. If shrinkage is happening, then we stay with the Arimidex for five years. I told the doctor that I don't feel like I am going enough to fight this by taking that one little pill each day. It is such a strange feeling to know that you are considered "stage IV" but you don't even feel like you are sick. That is the way I feel right now. I hate wondering when the sick part will kick in. I am staying optimistic that this little pill will do its work and start shrinking the tumors.
May 13, 2009 10:58AM ElaineD wrote:
I can well relate to your shock. I had 12 years free, before a slight tickle in the ribs, which a very throrough gastroenterologist insisted upon investigating further-showed mets to the pleura.Good luck with the treatment.
May 16, 2009 01:02AM donnabee wrote:
coffeegirl, I can relate. I was dx'd a month before you and I don't feel sick. How can I put all my faith in that little pill? (even if it does cost an arm and a leg) I'll tell you honestly, that I always felt I was "spiritual", but not religious. But believe me, I have lots of talks with God these days and feel a lot better for it. good luck to all of us. --donna
May 16, 2009 07:16AM Dollyd wrote:
Our stories are somewhat similar. I was free for 12 year after stage 2 at dx. I also had fluid drained from plura and Talced (this sticks the lung lining to lung to help stop fluid build up). The tumour level dropped from 250 when diagnosed with mets to 120 within 1 month of having overies removed and going on arimidex. Still on arimidex 6 years and 7 months later.Turour level is usually 18 to 20 at checkups. CA15 test
I was 32 when first diagnosed.
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