Beginning The Journey

[WhippetX2]

Hi, I was diagnosed in April this year. I had severe back pain and a scan showed multiple spots on my spine. Quite a shock since I had never had cancer before and never missed a mammogram. In fact the breast cancer never showed on the scan. The diagnosis was made with a lymph node biopsy. I’m now pain free, taking Ibrance and letrazole, taking really good care of myself and clinging to this wonderful site for the super support and information it provides. You’ve found a really good resource.

[Sparky95]

Welcome to this site. I have found it to be so helpful. The support and information that others share provides information that your doctors just can't provide because they don't live it. I have been dealing with breast cancer since 1995. I had two breast cancer recurrences and one lung cancer (quite sure it was due to my earlier radiation treatment of the breast cancer) and was planning to celebrate being 10 years cancer free in 2019 when I was diagnosed with mets to my brachial plexus, spine and nodes.

It is a journey that none of us would wish on anyone. However with the love and support of family, friends and other warriors we fight to make the best of the days we have,

Take care,

Esther

[WhippetX2 in reply to Sparky95]

Thank you for sharing and for the encouragement. I just realized reading this that we are all “sisters” related by this damn disease. Sending you hugs, Sandy

[Sparky95 in reply to WhippetX2]

Yes, we are all “sisters” in this journey together. I feel so blessed to have this online support from you and others. Hugs, Esther

[Titaniam_Turtle in reply to Sparky95]

What were your 2 breast reoccurances? Was it the initial and MBC diagnoses? I am try to find out how many woman get a separate and different breast cancer. I can see that happened in your lung cancer being a secodary cancer.

[Sparky95 in reply to Titaniam_Turtle]

I had 2 breast reoccurrences before I had the MBC diagnosis. They all were HR positive and HER2 negative. My 2nd recurrence was stage 3 in 1999 so I am considered a positive outlier. I’m so thankful for this online support.

[Discocat]

Hello!

Welcome to our “sorry to have you” club.

I’m new to the site and diagnosis too. I found out around the same time as you in May of this year….also straight into the deep end as my initial cancer was found to have spread to my bones too.

Glad to hear that the meds are helping with your pain. I’m also on the same meds with a monthly implant of Zoladex (Goserelin) on top and infusions of Zometa for bone strengthening.

Take care and keep on looking after yourself,

Sending you best wishes and positive vibes!

Zoe xx

[WhippetX2 in reply to Discocat]

Thank you. Sending you love and hugs.

[Hidden]

Welcome and sorry you have to be here.That must have been such a huge shock to hear. It takes quite a while to get your head around the news and all those thoughts and emotions that swirl around. You already sound strong, positive and ready for the fight - something that we all share here.

Do you have whippets? Or are you really fast? 😆

Clare

[WhippetX2 in reply to Hidden]

😂Sixty years ago I was pretty fast, but now I watch my two Whippets, Anna and Hanna, run around.

[Hidden in reply to WhippetX2]

They are super fast!! Anna and Hannah - very clever, you only have to say one name and they both come running!!

[Joannaaaa]

Hello and welcome, were all in a similar situation. This group of people are fantastic in their support, advice and sharing. Wishing you well.

[WhippetX2 in reply to Joannaaaa]

Thank you so much for your post. I wish I would have found this site earlier in my journey. The information, support and encouragement have been invaluable. Sending you hugs and strength.Sandy

[Hidden]

Hi! Welcome and sorry that you find yourself here. I was diagnosed with de novo mbc in February 2021. I was in so much pain that I could barely get off the couch which was misdiagnosed as trapped nerve or pulled muscles. Eventually I was diagnosed with extensive bone mets in my spine, pelvis, sternum, scapular, skull and ribs. There was so sign of the primary tumor on my mammogram the previous year and it was difficult to locate on examination when everyone knew where it was based on imaging!

I have been on Ibrance, Arimidex and Zometa for 9 months. I built up to walking 3-4 miles a day and have returned to swimming and weight training which has I was doing before mr diagnosis and I've also taken up Tai Chi! Although I feel much better than when I was initially diagnosed, I can’t claim to be pain free. Every day there’s some pain or twinge from one of my mets. I think that they have a rota!

I find the information from the ladies in this group extremely useful and comforting. It is great to hear the stories and experience from those who have been in treatment for many years. Stay strong!

Reply

(3)

[WhippetX2 in reply to Hidden]

Thank you for sharing your journey. Although I wish you didn't have to be part of this "club", you inspire me to continue with exercise and to push through the occasional discomfort. Sending you hugs and strength,Sandy

[janadancer in reply to Hidden]

Hi I’m new to this site. Wanted to respond to you as I have similar situation. Bone Mets and a recent arm is tingling and numb for two weeks now.... would love to talk with you.

[Hidden]

Thank you!

[JKMS]

Hi - I was also diagnosed de novo last November with mets to my mediastinum. Being diagnosed stage four from the get go takes some time to get used to conceptually but over the last year I have had a compete metabolic response and tolerate Palbociclib and Letrozole very well without side effects (Zolodex didn’t work for me so I had my ovaries removed). To echo what others have said, this site is super helpful and I feel very grateful to be able to tap into such impressive and useful knowledge that many people have. I wish you very well. Take care x

[Beryl71]

I'm so sorry about your diagnosis, but your story is similar to mine, except that I had had breast cancer 26 years previously. I had a mammogram a couple of weeks before my diagnosis, but I assume it was because the metasteses was in other areas and no longer a cancer in my breast. Pretty scary. It was last year as we entered lockdown. This is a great group. I have been fine on ibrance and letrozole other than a few infections that dragged me down. I'm about to start zoledronic acid for my bones on Thursday. Enjoy your life, make the most of every opportunity! Carolyn x

[Titaniam_Turtle in reply to Beryl71]

I am basically on the same regimen as you, Ibrance and letrozole. I also get Xgeva for bones. I have been on 125 Ibrance for about 5 years. It is still working. I have mets on my spine. What is zoledronic acid do for your bones?

[Beryl71 in reply to Titaniam_Turtle]

Probably the same as you have, I don't know the brand name yet. X

[Debbigbang]

Good morning 😁

I was diagnosed at my biopsy, not suposed to, my surgeon said he was an idiot for telling me. My surgeon had told me mine was slow growing type and probably in my breast for some time. Which I had a mamogram, they tested again found nothing..then boom. No cancer in my family, heart for sure. Which was a weird as operation day as I was also diagnosed with high blood pressure and was touch and go that day. But I considered this as a wake up call for me. I was slowly killing myself with stress, wine and crappy diet. Once one gets through the fear part as that to me, serves no purpose it's a work in progress. There are small leisions on my back and a bigger one on my liver, who doesn't want to get with the program and had grown a bit since last scan. But I have faith she will heal. I have been on ibrance/letrozole for 5 mths. I have a wonderful onocologist she always remains positive and waiting for Jan scan to see if meds are going to turn around the liver growth. I don't want to change meds as the game is to stay with one for as long as you can. The bones were actually healing. Other than all THAT, blood pressure is controlled by meds and diet, meditation, exercise, positivity. I have 2 teenage boys and I have to be around to see them grow into awesome adults. I am healthier than I have been in a very long time. So for that I am truly grateful. I still work full time and have been asked if I would like another project. Keep positive because negativity just won't help on this road.

Hugs ❤🙏

Deb

[8576]

Just want to add my welcome to you. I was diagnosed in 2013 with one large met to my left hip that affects my walking. Now I have mets to both lungs. I have been through most of the meds available and am currently on Verzenio and Tamoxifen. Just had scans done so waiting to see if this is working for me. Fingers crossed. Next step would be IV chemo. So glad Ibrance is working for you. I agree to staying on as long as possible on a drug. I always felt we changed to quickly but oncologists think differently. Taking good care of yourself is a good plan and one of the best things you can do. Sandra is our great resource. We are very grateful to have her here but everyone contributes in one way or an other.

My best advice is searching John Hopkins or Mayo as well as your national Cancer Center. If it is happening they know about it.

Also, don't hesitate to get a second opinion if you don't agree with your oncologist.

Wishing you well on your journey.

Cheers, June S.

[PJBinMI]

Journey is the term I use for this cancer experience, and so often I find myself having new insights into much about life, similar to visiting a very different place. I'm also one who was diagnosed with denovo "extensive bone mets." Mets in spine, pelvis, scapula and rib. I'd had 3 mammograms in the previous 13 months, all clear. The surgeon phoned me on 3/1/2004 to tell me that the biopsy was positive for breast cancer and that he would like me and my husband to come see him the next day. By the end of that month, after so many tests, we knew about the bone mets and my treatment began on 4/2 .So my journey began just over 17 1/2 years ago! I am only on third line treatment, and until fall of last year, I still had only bone mets. Cancer was found in one of my ureters last year, was removed surgically and now requires a stent replacement about every four months. In August this year two tiny mets were found in my brain, and that was pretty scary! I had one session of stereotactic (very focused) radiation, which actually was very interesting. Another MRI last week showed that those mets were gone. But I still have some symptoms, problems with balance and problems with fine motor coordination, especially with my right hand. I am in PT and OT and my balance is improving, but my right hand is still far from what it was. My way of handling this has largely been learning all I can. Right after getting the diagnosis, I visited the nearest book store and a wig salon! LOL I've never needed a wig but I have done alot of reading and have attended several large MBC and BC conferences. Oh, having a sense of humor, some times a very dark sense of humor has helped alot, too. And though we don't have whippets, we've always had dogs and cats who are fun and comfort. I also realized early on that I needed to make friends with needles and that has gone so well that I can watch the needle go in and remain calm about that! I've met alot of other women with mets and several have lived as long as I have. Those of us who are older, have E+ cancer and bone mets only often do well for longer than we'd do with a different cancer profile. (It always makes me both sad and angry when younger women with children who still need them get this lousy cancer---so unfair!) I have a great husband, good family support, great medical insurance, and have had 'end of life planning" in place for decades. I hope that you will do well for a very long time, too.

[Titaniam_Turtle in reply to PJBinMI]

I look up to PBJinMI. I am 56 and I have had MBS, E+/P+ receptive since I was 50. I do have children 16 and 18. Like others said, I want to see them graduate from college, get married and meet at least 1 grandchild. I had a little kink in my path though. I got HER2 receptive cancer in my other breast about 2 years ago. I had to stop Ibrance/letrozole to get chemo. When I finished the first 4 months, the HER2 tumor was gone, got surgery to clean up margins and then radiation. Then I went back on the Ibrance/letrozole and it still works. My mets in my spine have not grown. Also, I am finally able to see a neurologist to work on some of the issues I still have with my back surgery. I am not able to walk for long or sit for more than 30 minutes without spasms and pain. I would love to walk my dogs again or shop without feeling like I want to die. It's not till January, but I feel hopeful that they will see something that can be fixed! I wanted to let you know that I admire you along with the many kind, amazing, caring, and brave women from the best group of people I have ever met and sought for advice. I look up to PBJinMI because I hope I can follow your path to live at least 17 years or more. You also are so calm and knowledgeable. It gives me hope and peace. Thank you.Andrea

[PJBinMI in reply to Titaniam_Turtle]

Thank you, Andrea! I am humbled by your compliments! But believe me, I have not always been calm during this journey. I remember a metster saying it's like riding a roller coaster blindfolded! I sure relate to that. I've cried many a tear, pounded the bed with pillows, and used vulgar words! But I also good at calming myself and seeing the glass as half full even when the contents aren't what any of us would want....

[love2golfwell]

Welcome to this site. I'm so glad you are pain free and that the Ibrance and Letrozole are working for you. I have been on these meds for a little over a year and am also doing well, trying to exercise and eat healthy and take good care of myself. You will find this site to be supportive and full of good advice.

[WhippetX2 in reply to love2golfwell]

Thank you for taking the time to respond and for the welcome. Sending you hugs and wishing you the strength to fight this with everything you’ve got. Hugs, Sandy

[love2golfwell in reply to WhippetX2]

You are welcome, Sandy! As many have said to me, this is not a club you want to belong to, but at least we can have some good support with this site. Sending you back some hugs and also strength and faith to battle this disease, have great scans and be able to stay on these meds for a long time without side effects. My goal is to be here long enough to see my daughter have children and my son to get married. Both of those may require a few more years, but I am hopeful.

[mariootsi]

Welcome! Glad you are doing well!

[Fiercefighter13]

Welcome to the sisterhood....all be it a sisterhood all of us would prefer not to be in. I wish you the very best on your journey, and hope you continue to do well. I'm so sorry to hear each and every time a new person is diagnosed with metz. This site is a Godsend in so many ways, I'm glad you found us here for support, encouragement and information. Take good care!