Newbie

[Hort09]

Hi I have been recently diagnosed with mestatic breast cancer after having been cancer free for 10 years . I live in Ontario with my husband and two children at home ( in their twenties) . It has spread to my lung . I haven't seen an oncologist yet and am waiting on an Mir. Just had the surgery in November and have to wait until late February to see an oncologist . Just want to have some support from others going through this . My family is great but sometimes you need someone that knows first hand what you are going through

[Susan1953]

Stay positive. There r so many new treatments now than there were 10 years ago. I was diagnosed last April with bone mets and am NED now on Ibrance and letrozole. Your treatment will depend on the type of breast cancer you have. Stay strong.

[Hort09 in reply to Susan1953]

Thank you for your support it means alit to me

[Kimr2081 in reply to Susan1953]

Susan, do you remember your tumor markers fluctuating. I started the Ibrance and Letrozole in September and my doctor checked my markers in November and both were down. He checked them again this month and only one result is back (CEA) and it is up a little. I hate these ups and downs and waiting. It is still lower than when I started but of course, I want it to all go down. How funny, my doctor just called me when I was typing this and he said not to over-react he has seen this before. Getting scans in January.

[Tap321 in reply to Kimr2081]

Praying for good results with your scans.

[Kimr2081 in reply to Tap321]

Thank you!!

[Susan1953 in reply to Kimr2081]

Kim, my Dr. has not even mentioned tumor markers. I have copies of all my lab work but have not seen them. Some people have said not to concentrate on them and they cause alot of stress. Right now, I am having PET scans every 4 months and hoping NED continues. Watching tumor markers would probably make me very nervous!

[SeattleMom in reply to Kimr2081]

I read in "Dr. Susan Love's Breast Book" that this is commonly called a "flare," i.e. counts will fall and then often rise after treatment starts. It is not uncommon at all.

[SeattleMom in reply to SeattleMom]

Also, they will then start to drop regularly following the "flare."

[Kimr2081 in reply to SeattleMom]

Thank you. He did mention that so will hope that is what is going on. I really appreciate your info. Love that I get so much info on this sight.

[lweaver]

So sorry you have to wait. I had to wait 3 weeks for biopsy results and thought that was bad. I just want to show my support for you. Hang in there, we are here to help.

LeAnn

[Hort09 in reply to lweaver]

Thank you . At least when I had my biopsies I say my surgeon a few days later.

[demanos]

I was diagnosed with Stage Four in February of 2015. It's in my spine and lung. Biopsy confirmed this. At first I was blown away. However, the new drugs that are out have amazing results. I'm three years out and there has been no progression. I'm still working full time and having quality of life. I live alone but have great support groups. I'm on Ibrance, Letrozole, and Zometa. There are side effects but I see a palliative care specialist and am taking care of them symptomatically, one at a time. I'm more tired than I use to be but otherwise, so far so good. Just take it one day at a time.

[Hort09 in reply to demanos]

Thank you for replying . I am also going back to work full time after the holidays .at first it was a shock . It took awhile to sink in . Yes am taking it one day at a time . I am glad you have not had any progression .

[Grace301 in reply to demanos]

Hi - I admire your ability to continue working etc while on these drugs. I found them incredibly hard to tolerate - do or did you experience bone pain at all from the Mets? Thank you for sharing.

[demanos in reply to Grace301]

Some bone pain. Yoga and walking help a lot. It's my osteoarthritis that hits me the hardest. I take a Motrin every 4 hours and that seems to take the edge off.

[Grace301 in reply to demanos]

Thank you so much for your reply. I'm hoping there is a drug out there for me that I can tolerate. All the best to you!

[Hort09 in reply to demanos]

Where do you live ? Is medical marijuana oil available to you ? It helps with my fibromyalgia as well as arthritis.

[Hort09 in reply to demanos]

I am wondering where you live and if you have access to medical marijuana oil . I know it helps me with my fibromyalgia and arthritis pain . Actually it's the only thing that helps . I am lucky to have this option

[Halfpint2]

I had been in remission for 11 years when they found it had come back into both lungs in Jan. 2016. I did a year of chemo and now I’m on Femara and Letrozole. I’m having scans today but so far all has remained stable and I had a great 2017. Hang in there and don’t hesitate to ask any questions. God Bless.

[Hort09 in reply to Halfpint2]

Thank you and I hope everything will be stay the same in 2018 . Prayers

[SusieIM]

You have come to the right site, welcome! I am blessed by the support I receive here, you will be too--

[Kimr2081]

I have never been a support group type of person but this type of forum is perfect for me. I think you will find it very helpful, inspiring and supportive. Best of luck to you and welcome.

[Tap321]

There are many more great drugs than 10 years ago. I don’t understand why you have to wait until end of February to see an oncologist. Can you get on a waiting list for earlier to get MRI and see oncologist? You can get a lot of info on how others are being treated and what side effects they are having and how to help manage your treatments here and on other similar forums

I was diagnosed with met to liver 2 years ago. I was given ibrance to see if my tumor would respond and then surgery 5 months later. I have stayed on the ibrance. Not too many side effects. I have been able to manage most of them

I pray you get a really great oncologist!

Wendy

[Hort09 in reply to Tap321]

The oncologists here are so busy that's the earliest I can get in. My old oncologist retired and there was one that replaced him but when I saw him he answered our questions with more questions so we weren't comfortable . It's ok to wait . As for the Mir , we asked our family doc to get me in anywhere . I got a bone scan within a week hopefully the Mir will be within the month . It's always hurry up n wait . When I had the first breast cancer it seemed to be something every two weeks but now it's longer wait times . There are so many people with cancer now which is frightening . I am patient because it means mine isn't as bad as someone elses

[SeattleMom]

Hello! I had a recurrence of breast cancer in November after having had first diagnosis 17 years ago. I find it insane that you are not seeing an oncologist IMMEDIATELY! Are you able to get help from another provider? Cannot believe you will be waiting two months just to begin treatment--please do not sit on this! Prayers to you!

[Hort09 in reply to SeattleMom]

Thank you for your prayers . My original oncologist retired so I am changing to a new one . They are so busy . I am thinking that mine is not as immediate as someone else's . I m ok with it . I am still on tamoxifin for now and am just waiting on an Mir . My own doctor has done a bone scan n getting an mri ordered so we have that before we see the oncologist . If something comes up I'm sure they ll push me up

[Rockymae in reply to Hort09]

I echo several replies - push for answers. Meet with your family doctor now and discuss the results of the bone scan, get a copy of the results as well. Do the same with the MRI when you get it. Do not assume why you are waiting. If the scans show nothing exciting - then you will feel better waiting. Family doctors are busy and sometimes don't keep on top of everything. You need to be your own pleasant but definitely persistent squeaky wheel.

I was diagnosed with MBC in 2015 after 8 years. One met in my arm. Long story but I continue to champion for the best outcome. My oncologist understands - that oh well you have MBC what do you expect - is not an acceptable answer. I just recently started Ibrance after 2 1/2 yr on Letrazole. The first cycle did not go well, so it was decided to stop. No new mets have been noted so after some recup time we will discuss whether to start it again.

I don't often reply in this post, but find it useful to read. I have a great poster - stork trying to swallow a frog - frog's head in the throat but has its front legs wrapped firmly around the stork's throat - the caption - never give up!

[Hort09 in reply to Rockymae]

Thank you for replying as I am finding that all of you are my only people in this ! The ct which was done for a study I participated in ( in a big city)after my lung surgery showed two spots on my spine but the bone scan done done here in my small town showed that they weren't cancer . I haven't gone back to my doctor to question what they are because they weren't there before so what are they . I am getting a ct done of my organs n again waiting for that appointment . I guess most of you are from the States and I am from Ontario Canada . We may have things paid for but health care ie tests go at a snails pace! I be heard of rich people going to the states to have stuff done instead of waiting . I have asked several times about the oncologist appt. thanks

[Rockymae in reply to Hort09]

I too am from Ontario, southern, a bigger city. I can not say why, but so far my experience getting appointments has been acceptable. Mind you I have at one time or another been to 5 different cancer hospitals around Ontario, which has not been easy. I have a good team with my family doctor and general oncologist. The radiation oncologist had to be prodded. She wanted to "keep the cancer comfortable" with mild radiation and deal with it as it spread. I said I was not interested in keeping one met happy while it multiplied. Kill the cancer, or at least try hard!

You do what you feel you need to do and decide what risks are tolerable. It is not an easy journey. There are many challenges and some days, even with faith, friends and family - it takes someone with cancer to understand. Hang in there and keep plugging. The body does have odd things that are not cancer, however best to keep an eye on that area.

Do you ever get the tumor marker blood test Ca15.3 done? It may not be useful for everyone, but for me changes in values have always been important. My oncologist initially poo pooed it but every time it changed so did my cancer, so she gets it done now.

The CT and bone scans should show a lot. I have a science background so personally read every test result sent to the doctors. I always make sure my family doctor gets a copy as well as the oncologist. If the oncologist is hard to see, I can always get the report from the family doctor. They are good at providing a photocopy to take away. My binder goes to all appointments because sometimes paperwork lags.

[Hort09 in reply to Rockymae]

Thanks I am awaiting to see a new oncologist at Jurvanski in Hamilton as my original one retired and I didn't like the new one ( answered our questions with questions). Our family dr is the one getting the bone scan n ct set up before we see oncologist and my surgeon in Hamilton who did my lung surgery is finding me a new oncologist . He s been wonderful . I think it's cause I am getting a new one that it's the problem right now. I wish you the best n glad to know of someone else close

[Cowgirl2]

Hello and welcome to an amazing group of strong ladies who are all fighting this beast together, one day at a time. I was diagnosed with MBC April 1, 2014. My cancer had spread to the lymph nodes in my chest wall. I have been taking chemo for almost 4 years. My cancer has spread to all of the lymph nodes in my chest and down between my breast

My advice is to stay positive. Find friends who are supportive. Stay away from negativity. It’s okay to have “down “ days, but then you have to pick yourself up and fight. There are so many more options with medications and clinical trials than there has ever been. I have talked with many women who have been living with MBC for up to 22 years. No one but God knows how long any of us have to live.

Stay on your doctors office. Ask them to contact you if there are any cancellations. I, too, hate to see you having to wait 2 months to see a doctor. I would go crazy, lol

God Bless you on your journey. I am here for you always.

[Hort09 in reply to Cowgirl2]

Wow you are an inspiration ! Thank you so much . It's the not knowing that is crazy right now . I think when I have a plan I will feel better . Thanks again

[Aire]

HI Hort,

I’m so sorry to hear that you are having to go through this. I lived in Ontario for ten years, now living in CO. I was Cancer free for thirteen years, now in lung, i am being treated with Keytruda for the lung mets. I have had two PET scans and they have shown no new activity after six months of treatment. I feel very blessed that there are so many new treatments available. My quality of life is quite good, i can do most everything I used to do, only slower! I hope you keep optimistic. This site is very good with keeping you informed on what treatments are available and what others are going through. What kind of surgery did you have in November?

I just realized your post was 3 months ago. I hope you keep me posted. Sending hugs and prayers,

Aire

[Hort09 in reply to Aire]

Hi thanks for replying . I had a wedge taken out of my right lung . I was involved in a study after my surgery for blood clots so had scans done and they found more spots on both lungs . Because my Timor markers are up my oncologist assumes it's more small cancer n will be sending me for more scans in May . There are also a couple of spots on my spine that are so far not cancer but weren't there before so I guess we ll see what they are . Some days are better than others as everyone knows or some weeks . I am not telling a lot of people as I also have fibromyalgia and don't want people to know about it either as I had a close friend tell me I was crazy so I ve had enough of either no support or supporting others when I tell them . My family is good n supportive and the people on line are as well .