2 dif. types bilateral

grover

I was assured by primary, ob gyn, radiologist, and a gen.surgeon claiming to breast specialist in August 2012 that tiny mass in right breast was nothing to worry about,agreed after "call back" mammo & sonogram that I should wait 6 mts for repeat mammo. I was only 42 & trying to change my habit of stress & worry, so I agreed to wait. I made it 4 mts then returned to surgeon when I felt lump had grown by barely touching it! Still 99percent sure it wasn't cancer ( because it wouldn't grow so fast) we agreed to do a lumpectomy. He did this without any additional imaging and not image guided.he reported to husband post open that it was perfectly round, not to worry, not cancer. Well,here I sit 2 weeks after a bilateral mastectomy waiting for pathology from lymph nodes removed from right,invasive dcs triple negative breast. Left is hormone responsive, closer to chest wall (found on mri done when I switched doctors quickly!) I have read many postings and still can't understand how so many doctors say this so rare when so many of us have experienced it...and, worse, a failure to "catch it early" which they all preach! I want to focus on healing and thinking positive, since I still need chemo and radiation, but I'm really angry!

grover

Thanks kayb. I will try the visualization. I won't start chemo for about 2 weeks, but I'm definitely praying and doing calming breathing exercises. It's easier said than done on bad days!

grover

Thanks kayb. I just had PET &CAT scans done mon. & repeating simple prayer type mantras got me through it. They looked good btw. Got last drain tubes out yesterday & was hoping to feel good today, physically & mentally...no such luck! Still cant sleep in bed...hurting all over. Plus found out my beloved daddy had a mysterious seizure while on a golf trip 8 hours away...so lots of emotional stress too. He's out of hospital, but too far away! I'm so worried about my mom holding up. Also found out a dear friend of mine got news that her leukemia is coming back and theyre recommending a bone marrow transplant. Thank God for this site & valium:)

grover

Thanks! I actually feel 99% better now...got my special recliner my local support group loaned me back from mom's house...sleeping well & this is day 3 with no pills:) Dad's home, no more seizures so far, has neuro. appt. tmrw. I'll have to help him learn to be a calmer patient...he's very high strung!

Auralaine

Hi! I just joined this site today, so am new to this community. Grover, I'm so relieved to hear your father is doing better. I can't imagine worrying about a family member while going through this myself. I also wish well for your friend who has had a leukemia recurrance. Bone marrow transplants (is she maybe getting a stem cell transplant? that's more common these days) are not as dangerous as they used to be years ago, but still a major undertaking. I had acute leukemia almost 20 years ago and turned down a bone marrow transplant in lieu of high dose chemo treatments. They worked, and I'm still here! I will certainly keep your friend in my thoughts and prayers.

I was initally diagnosed with extensive (5cms) DCIS in my left breast during a routine mammogram. The breast center here was extremely responsive and on top of things. I've been so grateful for them! They did an MRI to see the extent of the DCIS, and that showed a 1cm mass in my right breast that upon biopsy turned out to be invasive ductal cancer. So I had a bilateral mastectomy on 2/5. It took me about 7 weeks before I was able to sleep in my bed again, and I still am not entirely comfortable in bed. They were unable to do breast reconstruction from my abdomen, so I have tissue expanders and will eventually get implants. The expanders are very hard and tight, and uncomfortable when I sleep on my side. I must say, finally getting the tubes out was a major turning point for me though. I seemed to improve daily after they were out. I'm still building up my stamina from surgery, and am now also dealing with my first chemo treatment which I received last week. Thanks to the excellent care I received at the breast center, everything was caught early (the invasive cancer didn't show on mammogram or exam at all, so I was so grateful they did the MRI and found it.) I can't imagine how angry I would be if they had missed the invasive cancer and only dealt with the DCIS! At least you're in treatment now, and will get through this! I used a lot of visualizations and meditations to get through my leukemia, and have found them very helpful now too. Breathe!!!

Best wishes to everyone, and I look forward to chatting with you all in the days, weeks and months to come!

Happy Spring!

grover

Auralaine, Thanks! Dad's issues have allowed me some distraction from mine:) I booked him for physical therapy (for the torn rotator cuff he got during his seizure) at the same time I had mine for post mastectomy/ lymphedema prevention this morning! I can't believe you survived leukemia then ended up with BC too! I'm so sorry! My friend passed on the bone marrow the 1st time around, had been clear a couple years, and this time it's literally do or die. She's a faithful Christian & soooo strong willed, so if anyone can make it, she will! Sounds like you're strong, too! These expanders are definitely for the dogs though! Slept in bed last night ok but definitely more comfy on recliner. If I wasn't so " bottom heavy" I think I would skip reconstruction! I have almost a year to decide what type...Hope you do well with the chemo. Stay in touch.

Delvzy

Hi guys I have finally found others with a similar diagnosis thought I was the only one! I am an Aussie girl and nearly 5 years ago found a lump in left breast which turned out to be 2 lumps 5mm each grade 3 est prog pos with 1 node involvement. During diagnosis the also found my right breast had extensive DCIS so I had a bi-lateral mastectomy aux clearance both sides 6 rounds chemo no rads followed by reconstruction 18 months later which took 9 operations as left side didn't take for 2 goes . Despite what I have been through I feel positive and happy have travelled the world and done things I never would have before BC my hair is long again and I have about 80 percent of old energy back I would love to meet any ladies in USA when I travel back next year Delvzy Bendigo Vic aust

fredntan

hi,

I didn't have BC in both breasts, just the one. but did have radiologist tell me two years before  I found it that it was nothing. he had his US wand right on it. I could have been diagnosed way earlier.  I did file complaint with medical board. nothing happened. but now these doctors are probably a little better practitioners because they are aware of there negligence.

The medical board has forms that you fill out online. then a nurse will call you a few months later. records will be sent. the whole process took 6 months for me.

chicaroo44

hello grover,

im the same diagnosis as you.  the one only difference is i had no lymph nodes involved.  what type of treatment plan are you on?  did you do the brca testing?

exercise_guru

I too have Synchronous bilateral cancer My left side is HER2+ but they thought the Right side was DCIS. Because it was throughout my breast they did a Biopsy of both. They felt the DCIS was to extensive to save my right side so I elected to have a double mastectomy. After my mastectomy they found that I actually had two tumors in the right side that were ER+PR+HER-. I am grateful to this day that I had the double mastectomy. Its very frusterating that the imaging is not that good yet. More frusterating that I was 42 when it was discovered.

I am hoping the Chemotherapy and Tamoxifen work.

Englishmummy

Hi Excercise, it looks like this thread has been dormant for a while, but there is another more active thread here.

https://community.breastcancer.org/forum/109/topic...

I'm 41, diagnosed in May - my bs & oncologist told me the prognosis is the same for bilateral as uni ( based on the highest stage lesion). There are a couple of us younger gals with 2 types on that thread. Hope to see ya there. Hugs, Laura