Recently Diagnosed and waiting to see what is next.

DebbieMeier

Thank you for this group and allowing me to join. Over the last few weeks I have browsed through posts here getting an idea of what to expect and what others have gone through.

I guess I'm lucky, my diagnoses and treatment happened fast, partly because I waited a bit long to get to the doctor. I often wonder if I hadn't waited if my treatment would have actually been delayed. Anyway, on July 3rd I went in to have my right breast looked at. Over the course of about 90 days I went from a little swelling that would go up and down to lymphoma in my right arm and lymph nodes on my collar bone swollen and a extremely painful breast and swelling across my right upper body. They got me into the clinic up in Mason City, Iowa on the 7th for a lymph node biopsy and skin punch biopsies of both breast. Before the punch biopsies they change course and sent me in for a CT scan. On my way back from the CT scan and in the waiting room suddenly my breast started to bleed. They immediately got me in to get the bleeding to stop, did the punch biopsies and checked me into the hospital. By checking me into the hospital on Friday it set the stage for their top oncologist to not only see me but be forced to take me as a patient since he was on rounds.

Monday the took me in for mapped radiation of my right breast mostly to get the bleeding to stop. Three days of radiation then they got me going on Taxel the next week. Hadn't realized just how swollen I was before the chemo started, but was all the way around my back and into my left breast. Three week of Taxel I crashed, felt terrible, hurt everywhere, couldn't breath, no stamina. Cell counts were not recovering so they suspended the Taxel with the plan to get me approved for a little different combination. Two weeks later still not recovering well so my team regrouped, scheduled a bone marrow biopsy to be certain no cells in my marrow, which there wasn't and then a switch to Ibrance.

Luckily, with the help of my physical therapist most of my lymphodema has resolved in my mid section and chest, just some left in my arm. Other then some soreness under my arm into my breast I'm pain free. Was on Fentanyl patch but ditched it in hopes of improving my breathing, getting my sense of taste back along with ending dry mouth, which all improved soon after giving up the patch.

I am now one week into my second turn of Ibrance and will have a CT Scan along with full Bone scan tomorrow. My doctor firmly tells me that we are in control mode. I've not had any surgeries and he says none will be scheduled unless they are needed to control the cancer.

Anyway, that's my story, so far, just waiting to see if what we are doing is working while making plans for the next year making certain that I have a plan a, b and c just in case.

Moderators

Hi Debbie-

We're so glad you've joined us, although we're so sorry for the circumstances. It's a club no one wants to join! Thank you for sharing your story with us. We're all here for you, and hope you find this community to be a source of support as you continue with treatment!

The Mods

DebbieMeier

Wish I knew what was next, suppose the results of tomorrows scans followed by my appointment Tuesday with my oncologist will shed some light onto the future.

My scans that I had before treatment began showed clear on the bone, clear on the brain and some shadows here and there on my internal organs that they couldn't make any determination on. All my biopsies had cancer cells including the fluid that they drained off my lung on the same side as my breast cancer but later xrays showed no change.

I was surprised when I was told no mastectomy planned, not certain how to take that, though I really wasn't looking forward to another surgery or healing and felt that if the radiation and treatment successfully stopped the cancer in my breast that I would rather not have it removed unless there was a health threat to keeping what is left.

The not knowing is hard.