PBMX for ALH or ADH?
Comments
-
Dear CLC,
I realize a mastectomy is a difficult decision to make. After you compile all of your information from your doctors, friends, and family I know you will make the best decision for yourself.
Amy
0 -
every day I am glad and happy that I did it. After my diagnosis with multiple ADH, I went to my OB GYN and asked her if she thought I was crazy for wanting a PBM. She said "no" and she would do the same in my situation.
Even though I had the crappiest weekend after my first expander fill last Thursday, and still have muscle spams it's getting better, and I probably won't need more expansions. They started me with 240 left and 180 right, directly during the surgery, so now I'm at 300 0n the left side and 220 on the right. A full B cup, and good enough for me.
My breast surgeon did a wonderful job, and I got full feeling in both boobs. It's been 3 weeks minus 2 days. I'm still more tired than normal but work half days and walk 1 to 2 miles on my treadmill every day. No meds except Ibuprofen and 1/2 Valium at night.
and NO FEAR anymore.
0 -
Kittycan - so glad you are still happy with your decision. That's great you are feeling good - may you continue to feel better and better each day!!
0 -
Thatsvanity, I am so sorry about your sister. =( God bless your family.
To those who have gone thru PBX with immediate recon, how soon were you able to use your arms? I'm considering NSM with one-step direct implants. Thank you!
0 -
Hi Crescent5~
From what I've gathered thus far, post mastectomy range of motion varies GREATLY. I know of some women who have trouble lifting their arms overhead after months (and sometimes YEARS!) while many regain nearly full motion right away. I truly believe it depends upon many factors--- with the #1 factor, IMO, being how much upper body strength one has prior to undergoing surgery.
While this may not be typical, I would say that my range of motion has been restored to ~90%. I am just one week out today. My advice to you would be to build as much upper strength as possible before your surgery. My BMX was considered to be a prophylactic procedure--- no SNB or AND--- likely a big factor in the quick return of my mobility/ROM.
Feel free to PM if you should have any questions about PBMX or post-surgery movement issues.
Take Care~
AJ
edited to add: I did not have 1 step reconstration like you're considering. I had a BMX with TEs.
0 -
vmudrow~ You can count me in to this group although I thought there would be invasive cancer found on my final pathology. I elected to have a BMX in lieu of having two very large lumpectomies in each breast. My pathology revealed ADH in both breasts along with some rare fibrocystic characteristics. So happy with my decision to move forward with the BMX instead of doing riding out another agonizing 6 month "watch and wait" period.
0 -
after nearly 3 weeks, my range of motion is good. But I have always been working out for the last 15 years, so I have good upper body strength. The only unpleasant side effect are the chest muscle spasms, possibly more so because I have fibromyalgia which I normally manage very well with workout and stretching. It's not so much painful as just unpleasant and uncomfortable. It twitches pretty much whenever the pecs are used, like opening a door, a heavier drawer etc. I'm waiting to get in with my physical therapist, to show me some effective stretches. The expanders are under the muscle. How anyone would get implants like this without needing them and bigger than a C cup is beyond me right now lol. I still sleep a bit elevated, which is ok for me. I wear a sprotsbra at night which contains the boobs well, as the left one tends to want to move to the side. I'm just finding out what works for me as I move along. Luckily I am a back sleeper, as sleeping on my side is still impossible.
still not one second of regret.
0 -
Hi cresent5,
I didn't do any pilates or yoga until about 5 months after surgery, but I could still carry grocery bags, fill the car with gas etc. I didn't rearrange furniture, but I just could tell when something was too heavy and I didn't move it. Today I had my first pilates class in about a year, and it was hard but it felt good, and I had strength and I didn't think about my breasts, I focused on my core and arms, and all was well. Good luck to you and thank you for your condolences for my sister. Each day that passes they feel natural and just a normal part of my body.
Amy0 -
I had no difficulty with range of motion after my surgery. I had a PBMX in March and returned to full range of motion fairly quickly. I had revision surgery in September and my range of motion was only effected for a short time - maybe 3 weeks.
0 -
Hi Sandy~
Did you have TEs placed at the time of your BMX in March? My range of motion is returning so much faster than I ever thought possible. At this point, I'm just afraid of causing any damage to my TEs by possibly doing too much, too soon. Any insight there? I am currently 8 days out from surgery.
Thanks!
0 -
Good Morning Dukes Up,
I didn't have TE's so I can't really speak to the question of damaging TE's by the amount of activity. I had direct to implant and I don't know if there is any difference in the amount of range of motion one can hope to receive with TE's v. direct to implant. I would think - not a medical opinion - that there could be some difference but I don't know how much.
I would be careful however for doing less than you think you can is most likely the best idea to prevent any possible complication!
0 -
Sandy~ Thank you! I'm currently sitting on my hands and itching to get back into the groove. I shall play it safe though and check with my PS before doing anything too crazy
Take Care!
0 -
Dukes up - I had TEs and had no loss of range of motion. The ps surgeon had me be very careful for 4 weeks. Not lifting anything over ten pounds, no lifting arms over my head. I felt great though so it was hard to remember to be careful. Just take it easy and ask your dr what is ok. If I remember right I could resume ah to it's taking it slowly at first. It's great you are feeling good!
0 -
yes, be careful with the moving around, it's hard because you feel good and want to do stuff. My PS scolded me at my week 4 appointment and said I had been doing too much he can see from the swelling... He also said patience is a quality a patient should have lol. 1 month and 2 days after my BPMX, they start to feel like "My" boobs. the twitching is much better, and the muscles are healing well. I could have full range of motion but not allowed to lift arms with elbow above shoulder level for another week. I switch between 3 bras during a 24 hour period, a firm sports bra, which holds the sides in very nicely, then a looser front close bra, and a softer but medium supportive sports bra for the night.
0 -
Bumped for Jill
0 -
Valerie - Thanks for the bump. I had read this right after I got the initial path report, and looking back I think I was in shock so the info didn't really sink in. I just reread all the posts and am amazed at how similar the stories are to me - strong family history, dense and busy breasts, biopsies, high risk screening with lots of call backs for nearly 20 years, failed medical procedures, then last fall the diagnosis of ADH and ALH. I knew right away I wanted the PBM.
My initial path was ADH, ALH from one doc and LCIS, DCIS from another. The path was sent to Vanderbilt for a tie breaker, and they decided ADH, ALH. The fact that one doc thought it already was LCIS, DCIS makes my blood run cold.
My agony right now is regarding reconstruction. I know it sounds particularly crazy with a PBM not to have reconstruction, but I just don't want my muscles involved. I might consider the DIEP, but since that is a really big deal, I'm thinking no recon, and then if I am really unhappy, I could always do it later (Probably not going to happen.) I don't really care that much about breasts. That could stem from the fact that I saw what my mom went through when I was 4 - 5 years.
Thanks everyone for your stories and input. It is good to know I am not alone. Next week I meet with the PS and the BS and hopefully we'll ge this ball rolling.
0 -
Hi ladies-
I just found this thread and have been scouring it. You all are such a wonderful source of information! I am 39 and had a stereotactice biopsy last week with an ALH dx(hope I am using the abbrevs correctly, still learning my way on here) I just picked up my images and path report this morning. I am meeting with BS on Wednesday. So of course I peeked @ the path report and it also stated microcalcifcations in ductiles. This is new information that was not told to me when given ALH news. The microcalcifications is what started this whole process and I am lucky that even those were seen as I have very dense breasts. So now I am so anxious for Wednesday and really ready to do PBMX. My maternal grandmother had BC and my mother has many many cysts and is considered high risk and she is 61. I am not sure I want take and see approach as each day passes while waiting to see BS I have become more and more stressed and anxious. I don't think that will work for me or my family as a way of life. Any thoughts or advice?
0 -
Hi swimmom01 - sorry you had to join this group, but glad you found us. I started this thread and had microcalcifications also. I have a strong family history, mother, cousin, aunt, possibly grandmother with bc - plus I had been having mammograms since age 30 (I'm 51) so I was ready for PBMX when I was diagnoised with the ALH 2 years ago. Others would take a watch and see, but I am such a worrier, plus I was sent to oncologist who wanted me to take Tamoxifen (would rather not), and surgeon said I would need to have MRIs which would mean more biopsies (already had 5) - so I chose the PBMX and have been very happy with the results. I felt like I was just "waiting" to get cancer. Let me know if you have any questions - and keep us posted.
Hugs, Valerie
0 -
This thread continues to be great. I just caught up after a long while.
Also, let me add; it's okay to be a worrier. We should be worried! But worrying about a serious issue does not make us overly anxious, just appropriate.
I hope everyone is doing well!
Many thanks, Val, for this thread.
The women with a generalized anxiety disorder deserve all the more compassion and concern and surely would appreciate the right to decide to disengage from a sure-fire legit trigger for generalized anxiety.0 -
I met with the BS last wednesday and had an MRI last Friday 5/11. I am scheduled for an excisional biopsy Thursday 5/17. Today has been a whirlwind! I got a call from the BS this afternoon with results from the MRI. Everything remains the same in the left breast with regards to ALH but the MRI reacted to an area in my right breast. So they had me go right in for a biopsy of that area. They were able to see it on the ultra sound so I had a needle core which was so much better than the sterotactic biopsy I had a couple of weeks ago. So once again I am waiting on a path report. I am so not sure what to think right now. I really had convinced myself that the MRI would show nothing new and I would just go ahead with the surgery on Thursday.....now who knows. I don't want to rush anything and want to have all the information first. Is this information rollercoaster typical???
0 -
swimmom01 - it sometimes seems like it's one thing after another and will never end. That's how I felt. Crossing fingers for B9 on your biopsy - let us know the results!
0 -
Hi all!
Well I am new here. I am 31 years old, just diagnosed with ADH on Friday. I have never had a mammo and my BS only ultrasounded the one lump they just removed...I had my post-op visit this morning. My BS suggests I see him in 3 months because he 'doesn't want to open a can of worms' by looking at the rest of my chest to see if there are other issues. He thought I should have my first baeline mammo at 35 (in 4 years)...He did note I am 'lumpy.
Maternal grandma had breast cancer at age 70. Mom, and 2 maternal aunts have non-hodgkins lymphoma.
Right nip has been itching and flaking and this is the breast that the lump came out of....
He did mention he had a patient like me that opted for double masectomies, and another who is taking Tamaxofen...
Ok, so I am not sure I feel comfortable taking the wait and see approach since:
1) i am only 31
2) I have a child who needs me around!
3) My entire chest has never been looked at under a scan
My mom thinks I should try to be seen by a breast specialist for a seccond opinion.Just wondering what your thoughts are after reading this...
thanks, B
0 -
Breezyanna,
I wouldn't feel comfortable waiting until age 35 to have a baseline mammogram. ADH can turn into cancer, and you may not feel lumps until it is no longer early stage. Why wouldn't he do at a minimum mammograms every 6-12 months? Digital mammograms are one of the only ways to detect microcalcifications that can indicate ADH, DCIS, or IBC.
If I were you I'd get a second opinion, preferably with a large breast center that has breast surgeons as opposed to general surgeons.
Best wishes!
0 -
I too would get a second opinion - I was sent to oncologist when diagnoised with ALH - and surgeon wanted to watch me very closely. I started having mammograms at age 30 - because of family history - soooo 2nd opinion!!
0 -
Hi breezyanna,
I would definitely would see a breast specialist and a genetics specialist. You will get the best information about what to do. I wouldn't wait until you are 35 for a mammogram that just seems senseless. I would handle everything now. That's how I would do it for myself.
Best wishes,
Amy Lynn0 -
just a follow-up on my story. To recap: ADH diagnosed left side 7/11, my choice was PBMX, in October 11, they found 4 more more areas both sides. super-fast recovery, expander exchange to saline implants in February.
And I have not worried about BC anymore which is a god-send
My boobs feel great! I have full feeling, and they're so perky and I went from a D to a full B which I like so much better. Have any of you had nipple reconstruction? I am hesitant about it , though I look like a Barbie... but I don't want weird Franken-nipples.
0 -
Bumping up for dmarie!
0 -
bumping this up
0 -
bumping because it needs to be bumped.
I just found out I have ALH and ADH in both breasts, so I am seriously considering more aggressive actions.
0 -
cinvee - so sorry to hear. PM me if you have any questions or would like to chat. I have been very happy with my decision to have PBMX - it will have been 3 years this May. I had ALH in one breast.
Hugs, Valerie
0
