PET scan results

[Mootzi]

Hi all,

I am so lucky to have found this site. You have helped me a great deal since my MBC diagnosis in October. I was first diagnosed with breast cancer in June of 2009. I had a mastectomy on my right breast with clear margins and no lymph node invasion. I had 6 rounds of chemo but no radiation. With each checkup there was no evidence of disease and then 9 years later I was diagnosed with metastatic breast cancer. Tumors were found in my liver, lungs, sternum and skull. I have completed 3 cycles of Ibrance and letrozole. I had a PET scan this week and I am thrilled with the results. My oncologist said I have 1 new spot on my liver, but the rest have gotten smaller or are resolved. The meds are working, but I have had to have two off weeks rather than one due to low counts. When diagnosed with MBC, my oncologist told us the best we can hope for is the tumors will shrink or stay the same, but they will not go away. This week’s PET scan shows some tumors have gone away. From your experience, might the tumors that are not visible now, come back? I’ve read on this site, that some in this community, after treatment, have no evidence of disease. Does that mean you can stop the meds, or do you continue with them? My family thinks I’m on my way to a full recovery, but my understanding is that I’m always going to have the stage 4, terminal diagnosis. Thanks for your help with this.

[Thrifty51]

Dear Mootzi you are correct in your understanding. I am on my 13 round of Kisqali (similar to Ibrance) my last two scans showed no evidence of disease but I still have to take the medicine and will continue until it quits working or hopefully soon a cure is found.

My best to you,

Audrey

[Barbteeth]

Hi Mootzi

Lovely to meet you

I agree totally with Audreys reply

My cancer came back after 24 years and I often think I had it for some time until I fractured a vertebra

People often ask me when does my treatment finish....I just say ..never... mbc never goes away but can be controlled

I had success with Ibrance/ letrazole for 18 months but it stopped working so now I take a different combo....there are meds out there so don’t worry about that

My oncologist at my first appointment likened mbc to a chronic illness...I’m not convinced of that analogy but it’s not doom and gloom and many ladies do live many years

Barb xx

[Mootzi in reply to Barbteeth]

Thank you, Audrey and Barb, for replying to my post. If the Ibrance stops working do the resolved tumors reappear? Thanks again!

[Barbteeth in reply to Mootzi]

Hi there

In my case I developed new mets but it can vary I.e a met can increase in size as well

Anyway don’t think about this yet as you’re doing well and on your first line of treatment so it’s all looking good

Barb xx

[Mootzi]

Thank you for your honesty, Sandra. I have felt the loneliness. I’ve looked for a support group in my area, but I haven’t had any luck finding one for those of us with MBC. Take care.

[Hidden]

Hi,

Welcome to this site! It is good news that some of your metastases have shrunk or resolved. It shows that your treatment is working. Hopefully you will continue to see a marked improvement and will be stable, which is a great place to be! With metastatic disease we will be in treatment for life. I am actually scared of the thought of coming off treatment, as the drugs are keeping the disease at bay and I wouldn't want to deal with progression. So I would try to look at staying on the drugs in a positive light.

I still remember what the first breast surgeon told me (when they thought I was early stage and planning for surgery). He said if I refused treatment I would die, but if I accepted treatment I would be cured. Of course, I know now that the "cure" is not quite here yet, but his words are still ringing in my ears about not stopping treatment. So even if you are adding any alternative or holistic methods or treatments I would advise you to still stick with your conventional treatment. I do not buy into the entirely alternative route. I am more in favour of an integrative approach in handling this disease to include diet, exercise, rest, relaxation, supplements and so on. There is a lot we can do to improve our health, even with this disease.

Sophie

[mariootsi]

Welcome Mootzi! I think Sandra said it all!

[Rhwright12]

Hi Mootzi! I’ve had 18 tumors...4 in breast and 14 bone mets! Wow! All gone now...but yes u will always have meds to take. I’ve been meteastic de novo for 3 1/2 years and work full time. It’s just part of my life now. I go in every 3 weeks on Friday afternoons for my IV Perjeta/Herceptin combo. I always tell people u get used to it after year 1.

[Hidden in reply to Rhwright12]

Hi Heather,

I just wanted to say it is great news to hear that your 18 metastases have resolved. That is such wonderful news! It is very encouraging to hear of how you are doing so well. I work too, and am glad I have carried on working as it helps me feel normal. It also gives me something else to focus on during the week, rather than dwelling on the disease 24/7.

Sophie