Dis Breast Cancer Survivors Part IV - GAGWTA

[Grace&Carolinesmom]

Never heard of the Goldilocks reconstruction until today. It sounds very interesting and might consider it for myself down the road. Thanks for the info @Hisgirl.

@eksmama01 - Hope everything is going well for you. Did you ever get that itch under control?

lmp - Hope everything went well at your pulmonologist appt.

I have seen my trifecta of doctors in the past 2 weeks. Oncologist, radiology oncologist, and breast care specialist/oncology surgeon. My specialist didn't like the lump under my last biopsy site and ordered an ultrasound just to be safe. She said it's most likely necrotized fat tissue but never takes anything for granted with cancer especially with TNBC. I have that scheduled for later this month.

 

[Pea-n-Me]

I have seen my trifecta of doctors in the past 2 weeks. Oncologist, radiology oncologist, and breast care specialist/oncology surgeon. My specialist didn't like the lump under my last biopsy site and ordered an ultrasound just to be safe. She said it's most likely necrotized fat tissue but never takes anything for granted with cancer especially with TNBC. I have that scheduled for later this month.

Good luck with that, praying that everything is ok. I have some weird scar tissue they’re watching but it’s always unnerving, right?

 

[Hisgirl]

Yall....how do you stay in peace? It's such a roller coaster.

I did get some good news today, the HERS is negative. So thankful.

But every ache, or ping in my body is freaking me out. I'm stage 1, grade 1 and now HERS negative. I want this out. Now. But it will probably be another four weeks for surgeon and plastic schedules.

 

[Pea-n-Me]

Yall....how do you stay in peace? It's such a roller coaster.

I did get some good news today, the HERS is negative. So thankful.

But every ache, or ping in my body is freaking me out. I'm stage 1, grade 1 and now HERS negative. I want this out. Now. But it will probably be another four weeks for surgeon and plastic schedules.

Hold on to good news.

 

[luvmarypoppins]

Hisgirl - Wishing you all the best as you await your surgery.
Grace&Carolinesmom - Wishing you all the best with the upcoming testing
My update - Good new from the pulmonologist. He said the mass is still there but shrinking. He doesn’t believe it’s cancer but it’s in a good place for a biopsy if needed. He will look at my next ct in the late fall which I am getting for the vascular surgeon to check on the aortic implant.
GAGWTA

 

[Pea-n-Me]

Hisgirl - Wishing you all the best as you await your surgery.
Grace&Carolinesmom - Wishing you all the best with the upcoming testing
My update - Good new from the pulmonologist. He said the mass is still there but shrinking. He doesn’t believe it’s cancer but it’s in a good place for a biopsy if needed. He will look at my next ct in the late fall which I am getting for the vascular surgeon to check on the aortic implant.
GAGWTA

Good news, indeed, lmp! So glad!

 

[Hisgirl]

What things did you have on hand? I ordered a breast pillow and a top with drain holders. Also a waist belt with drain pouches.
What else?

 

[Hisgirl]

For those who had surgery, how long before you felt relief that it was gone?

 

[Pea-n-Me]

Hoping some people here who’ve had mastectomies step up to help answer some questions, please!

 

[Grace&Carolinesmom]

Hisgirl - Hopefully some of the ladies who have gone through mastectomies will drop by to give you some advice and information. I had a combo lumpectomy, sentinel node biopsy(removal) and a gall bladder removal surgery. I would highly suggest getting a memory foam wedge pillow for sleeping. My SIL gave me hers (I had 2 wedges of different thickness to use depending on which suited me better at night) and it was great. Not only does it aid in drainage/circulation but it was also easier getting in and out of bed not having to do so to/from a flat position. I made sort of a sleeping zone. I had the wedge for laying on and soft pillows on each side of me to rest my arms. If my back was feeling sore, my DH would add some soft pillows on top of the wedge incline. I used the wedge for about 2 weeks before graduating to laying flat again in bed.

I am unsure exactly what you are asking regarding how long before feeling relief that it is gone? Perhaps you could expand a little on your question?

 

[#1hoosierfan]

I had a mastectomy last year. My main things were a mastectomy pillow, drain holders (it’s like a belt that clips around your waist) a robe that has drain holders in it, and a wedge pillow.

 

[Hisgirl]

To clarify about how long before you felt relief:
My stress level, knowing this thing has been diagnosed, has been a battle. I'm curious about after a DMX, do you truly feel it's gone.

I'm getting a goldilocks reconstruction, so my 'breast mounds' will not be totally flat. I know you still have to hear about nodes etc, but once the original thing is out, does your nervous system accept that as truth?

 

[maxaroni]

@Hisgirl While I have not experienced it myself, my mom had breast cancer twice. She had a lumpectomy the first time with chemo & radiation, mastectomy the 2nd time. She said she learned to live with it, she always had it in the back of her mind that she had cancer and it could potentially rear its ugly head again. That may not be encouraging but, for her, it wasn’t something she dwelled on or worried obsessively about. It was just there and would creep into her mind at times.

My best friend had cancer in one breast and opted for a double mastectomy. Her oncologist (same as my moms) told her to think long and hard about a double mastectomy as it was not a guarantee that cancer would not come back. She still opted for the double mastectomy w/o reconstruction. She was comfortable in her own skin and was able to go from a D cup to flat chested. Her husband was totally behind her with that decision. A year later, her oncologist wound up with breast cancer and had a double mastectomy. At any rate, my friend lived her life knowing it may come back but embraced life to its fullest, raised her children and said that cancer did not define her. She was able to compartmentalize it.

IMO, it’s a personal journey that is unique to everyone. Wishing you all the best with your journey.

 

[robinb]

GAGWTA friends!

I can't believe it's been 10 years this month since I joined your ranks. I had a Grade 0 DCIS and was treated with a lumpectomy and radiation. I "graduated" from my oncologist last year and I had my first routine mammogram today.

Everything is still fine .

 

[Grace&Carolinesmom]

To clarify about how long before you felt relief:
My stress level, knowing this thing has been diagnosed, has been a battle. I'm curious about after a DMX, do you truly feel it's gone.

I'm getting a goldilocks reconstruction, so my 'breast mounds' will not be totally flat. I know you still have to hear about nodes etc, but once the original thing is out, does your nervous system accept that as truth?

I have similar sentiments as maxaroni described. After my lumpectomy, which was before chemo due to my gall bladder emergency, I had initial relief that the cancer in my breast had been removed, the margins were clear, and my sentinel lymph nodes were negative. It did not remove the worry from my psyche. For months, through my chemo treatments, I really struggled with wanting a double mastectomy vs just the lumpectomy. I was getting advice from many people who advocated for both sides. I was weighing family history of cancer as well as my genetic testing which noted a variance of unknown significance of the ATM gene. I had conversations with all of the medical professionals in my life as I was looking for someone to give me a definitive answer but found it doesn't exist. I wanted a double mastectomy to make sure I didn't get breast cancer again but it was the words spoken to me from both my oncologist and my breast surgeon/specialist that made me reevaluate my decision. They both told me that a double mastectomy does not erase my chance of getting a recurrence of breast cancer nor does it remove the chance of getting cancer somewhere else in my body. They both said that it is impossible to remove all breast tissue. Even with a double mastectomy, there will still be breast tissue/cells attached to the chest wall where cancer can occur. They both said that the highest risk is when breast cancer metastasizes elsewhere in the body.

After processing that information, I decided not to have a double mastectomy at this time. For me, I wanted to let my body heal from the lumpectomy, chemo and radiation and trust that my medical team will monitor me closely. If I get another occurrence of breast cancer, I will most likely choose mastectomy at that time and decide on reconstruction. The decisions of surgery are personal to every woman with breast cancer and there is no right or wrong. It needs to be a decision that brings you peace of mind.

I have learned to accept that cancer will always be a part of my life whether it is active or not. Every blood test, mammogram, MRI, aching pain, weird sensation, etc. gives me a mini freak-out until I get the all-clear. As time passes, it gets easier but it's still there.

I hope that helps and doesn't confuse you more. It's just MY experience. YOUR experience is yours. We all live different lives but have a common thread of cancer that threatens our well-being.

 

[luvmarypoppins]

Happy Fall everyone!
It’s been quiet here so hopefully everyone is doing well.
Wed. Is my actual six month cancer check up but I am trying to change it to a telehealth visit as our van gave up the ghost after 14 years lol.
I looked at the portal. My sonogram is stable with some lymph nodes. The blood tests are mostly ok. I will see if my meds need adjustments.
My l leg is so painful at times and hard to walk. No blood clot so far. Next week I see the cardiologist for testing and checkup.
Was thinking of a fall Disney trip but Dh is traveling to Calif., Boston and Florida (not Disney)
GAGWTA

 

[Grace&Carolinesmom]

lmp - Glad to hear you are doing well......except for your van....LOL 14 years was a great run so maybe it's time for a new ride Why is your left leg painful?

Nothing new here except DH had a double hernia surgery last week but he is recovering nicely. Painful last week but feeling more himself this week.

Hope everyone else is also doing well.

 

[China Expat]

Hi all.I am four years out double mastectomy, stage 2 with one positive lymph node. Had a pet scan in January 2023 and all was clear. As far as how long it takes to stop dwelling on the cancer, I would say I often forget about those days completely. I am so busy with my work at school and my travels that it rarely crosses my mind anymore! I do live my life fully and have turned down a few lucrative job offers due to a large reduction in time off and the commitment to work for at least four more years. I plan to retire in one year in order to finish off my bucket list just in case the ax does fall.

 

[Hisgirl]

Hi all ~ I wanted to give an update.
I had a double mastectomy with a Goldilocks reconstruction on Aug 18th, so I'm six weeks out this week.
My nodes were clear, and they got wide margins. Grade 1 stage 1 and nothing in the other breast and no BRCA gene. And best of all too, my oncotype score was a six! So no chemo!

I started aromatase inhibitors last week and I'll be on those for five years.

The goldilocks reconstruction went ver well. Wish I could post pics! I woke up after about a five hour surgery and had small breasts from my own skin. I would say I'm a full A cup, about where I was as a teen ager. Now I can buy all those cute little bras at TJ Max! I had drains for 12 days and I"m awaiting one area to fully heal, but all in all, it's been great.

I highly encourage anyone to research this an an option.

What a journey it is, isn't it? Having to wait on each test to come back, knowing each one can change the path.

I have such a heart for the newly diagnosed, to help and encourage!

 

[luvmarypoppins]

China Expat - you have such a good outlook!
Hisgirl - you have been through a lot. Glad to hear you are recovering well.
My telehealth visit did not go well. I already saw my bloodwork in the portal so the writing is on the wall.
My cancer marker went up again so she said she is sure it’s most likely cancer for the 3rd time.
She is coordinating with my vascular surgeon so I will have one ct scan with contrast of the neck and aorta at the same time plus another blood test to watch it.
Surgery and watch and wait were discussed. Also a chemo type pill but she feels I am not there yet. I can’t have radiation anymore because I am in the unlucky 5% whose body convert and reject it. We talked about 3 hospital options. Not here for sure.
Prayers are appreciated.