Dis Breast Cancer Survivors Part IV - GAGWTA

[The Mystery Machine]

I am so sorry you're still dealing with this. Seems like a very unusual case - is that what they're saying?

They don't say things like that because they don't know. There is no database and women walk around with lymphedema and regular doctors do not understand it. The biggest problem is that it is misdiagnosed.

I went to the biggest name in my city, a plastic surgeon on the cutting edge, and he told me I DID NOT have lymphedema. (He mainly deals with Lipedema, which is a genetic). So there you go. Just because my limbs were not LARGE he pushed me away. Would not even examine me. Then the PT I was seeing dumped me. (I have since gotten a new PT).

My plan is to track down a lymphologist MD and go see them. There are only 8 in the USA. This is a brand new field.

I did ask my breast surgeon to WRITE A NOTE to explain it to the doctors I see going forward.

 

[ThistleMae]

It is more fatigue and heaviness. It feels like I have been lifting weights all day. Surgeon explained that it is a chemical thing with enzymes and such. I have not had the time to dig into it, yet.

Yeah, more scary stuff to read about....sometimes it's good and sometimes not good to do the research. I always end up doing it anyway. I think it's good to be informed.

 

[ThistleMae]

They don't say things like that because they don't know. There is no database and women walk around with lymphedema and regular doctors do not understand it. The biggest problem is that it is misdiagnosed.

I went to the biggest name in my city, a plastic surgeon on the cutting edge, and he told me I DID NOT have lymphedema. (He mainly deals with Lipedema, which is a genetic). So there you go. Just because my limbs were not LARGE he pushed me away. Would not even examine me. Then the PT I was seeing dumped me. (I have since gotten a new PT).

My plan is to track down a lymphologist MD and go see them. There are only 8 in the USA. This is a brand new field.

I did ask my breast surgeon to WRITE A NOTE to explain it to the doctors I see going forward.

Good for you...sounds like this is going to be a process. You are all over it!

 

[ThistleMae]

My physical went well, waiting on blood work. I did ask her about my low white cell count, since no one seems to be concerned. She said that this count can vary quite a bit for any given person and she would only be concerned if it was high, not low. She did blood work, so waiting on that. She doesn't feel I have any issues of concern right now, and she knows I see the cancer doc every 6 mos. She did schedule my next mamo, will have that done when I get back from Disney. Two days to go! So excited!

 

[robinb]

I have a question for those of you who had chemo. An acquaintance of mine was diagnosed with breast cancer last year. I know her from my DD's swim team and I know that her sisters both had cancer. She had a lumpectomy last year and was put on tamoxifen. Apparently she wanted to get off the tamoxifen (I'm not sure why) so she she saw a second doctor who supposedly ordered more "tests". He found more cancer and she just had another surgery where they found 13 of her lymph nodes tested positive . I'm getting this all second (third?) hand from someone who is putting together a care package. I have so little information and I find it frustrating that someone with such strong family history wasn't treated more aggressively or watched like a freaking hawk. She starts chemo next week.

Anyway ... I only had a lumpectomy and radiation and I never had a care package from my friends. What kind of things would she appreciate? Do any of you have some suggestions for me to donate that would make her feel better?

 

[luvmarypoppins]

Went for my 6 month cancer check up. My sono and one blood test was good and she is lowering one med a little.

They looked at my discolored l foot and red toe. MY endo thought it could be a blood clot so she sent me to the er. Seven hours later with ds3 coming down a little, Doppler test of leg and cardiac enzymes no answer.

Went to PCP. It was worse. They take pictures now and put it in your chart. She ordered a stat ct scan test. It's normal ptl.

Now onto the vascular surgeon Thurs. My PCP also wants a echo. I am a mystery, sigh.

Major snow today. Spring where are you lol. Ds 1 and 2 are looking at houses. D's 3 is going to Calif. Fri. to visit his friend who is a travel nurse.

GAGWTA

 

[Dancind]

Robinb, I never had a care package either. Sorry no one had suggestions, seems like pretty personal stuff to buy someone. And everyone has different preferences, some would love a gift of essential oils and some, like me, would HATE it!

LMP, where are you moving to? I love touring houses on Zillow, DH thinks I'm nuts. He's right, we have two houses right now.

 

[Seahorse17]

I had chemo for 6 months. I really had a problem eating and lost 30 lbs. what I enjoyed most was a basket of fruit and magazines to read. Also Enjoyed a few small crafts and puzzles.

 

[kittylady1972]

My physical went well, waiting on blood work. I did ask her about my low white cell count, since no one seems to be concerned. She said that this count can vary quite a bit for any given person and she would only be concerned if it was high, not low. She did blood work, so waiting on that. She doesn't feel I have any issues of concern right now, and she knows I see the cancer doc every 6 mos. She did schedule my next mamo, will have that done when I get back from Disney. Two days to go! So excited!

So I'm guessing you are back from your Disney trip by now right? How was it?

I have a question for those of you who had chemo. An acquaintance of mine was diagnosed with breast cancer last year. I know her from my DD's swim team and I know that her sisters both had cancer. She had a lumpectomy last year and was put on tamoxifen. Apparently she wanted to get off the tamoxifen (I'm not sure why) so she she saw a second doctor who supposedly ordered more "tests". He found more cancer and she just had another surgery where they found 13 of her lymph nodes tested positive . I'm getting this all second (third?) hand from someone who is putting together a care package. I have so little information and I find it frustrating that someone with such strong family history wasn't treated more aggressively or watched like a freaking hawk. She starts chemo next week.

Anyway ... I only had a lumpectomy and radiation and I never had a care package from my friends. What kind of things would she appreciate? Do any of you have some suggestions for me to donate that would make her feel better?

My husband bought all kinds of things for me to have during chemo just in case, but honestly I didn't use a lot of it. I ended up doing cold capping and they gave me ativan which just made me sleep during chemo sessions. However during chemo I always had a nice soft blanket with me, warm socks, and lots of water or fluids of some kind to drink. In case of nausea, I found a ginger peach green tea that helped as well as some ginger drops that a nurse gave me. Thankfully I didn't have any major issues with nausea. Now the hair falling out (despite cold capping) was worse. I had lots of bandanas and headbands to help mask it, as well as hats.

Went for my 6 month cancer check up. My sono and one blood test was good and she is lowering one med a little.

They looked at my discolored l foot and red toe. MY endo thought it could be a blood clot so she sent me to the er. Seven hours later with ds3 coming down a little, Doppler test of leg and cardiac enzymes no answer.

Went to PCP. It was worse. They take pictures now and put it in your chart. She ordered a stat ct scan test. It's normal ptl.

Now onto the vascular surgeon Thurs. My PCP also wants a echo. I am a mystery, sigh.

Major snow today. Spring where are you lol. Ds 1 and 2 are looking at houses. D's 3 is going to Calif. Fri. to visit his friend who is a travel nurse.

GAGWTA

Oh my goodness you ARE a medical mystery...yet again! So sorry you have to go through all of that. Hope they find the answer soon. Glad the other bloodwork was good.

 

[rajak73]

She had a lumpectomy last year and was put on tamoxifen.

Did she not have chemo or radiation? That would seem funny to have neither after a lumpectomy. They checked my DW lymph nodes when they did the lumpectomy with dye. Maybe she wanted to quit the tamoxifen because of severe hot flashes? There are differing drugs. The DW is taking Letrozole and not doing to bad. As of yesterday, 1 year down, 4 to go!

I only had a lumpectomy and radiation and I never had a care package from my friends. What kind of things would she appreciate?

The DW never got a care package either, only thing she got was a small heart shaped pillow. Still uses it at night, it's like a security blanket I think, LOL.

 

[kirstenb1]

Hi friends, I'm visiting you for the first time. I have several in situ, grade 0 spots in one breast. They are too far apart for a lumpectomy to be a viable option. So I'm leaning toward a double mastectomy, but without reconstruction. The reconstruction gives me pause because it's a more involved surgery and recovery. And I just am not ready to think about things like infections or other stuff going on. Has anyone else here not done reconstruction? Or postponed it? I'm 51, and go to the gym almost everyday. I love swimming and water parks, but I always wear a long sleeve rash guard shirt anyway, so that wouldn't change. I have had a couple of weeks to contemplate this. Y'all seem like a very sweet and close group.

 

[snappy]

Hi Kirsten,
Sorry you are facing this diagnosis and decision. Thought I would reply since I had a similar situation, except back in 2004. I had widespread areas of DCIS, in two areas in the upper outer and under the aureole areas, with a very small about 1 mm of invasive identified during the stereotactic needle biopsy. My surgeon indicated that a mastectomy was the best choice due to the amount of ductal area involved and the location under the aureole. He also removed 16 nodes during the surgery. He recommended delayed reconstruction since we did not know if more invasion would be located with the pathology of the breast after the mastectomy, but said he would follow me after surgery and we would discuss reconstruction when the time was right.

Luckily, there was no further invasion found and the nodes were clear.

I was on tamoxifen for 5 years.

I used a prosthesis for 2 years. Due to the size of my remaining breast, I was fitted with a large prothesis. It was hot and heavy in our climate so when he told me it was a good time to proceed with reconstruction, I wasted no time in finding the right plastic surgeon.

I had a flap reconstruction and the remaining breast was lifted and reduced to match. I imagine surgical procedures have advanced in the interim since 2006. Establishing blood flow to the flap was a bit nerve wracking, and the wound in the abdomen was painful for a full month. I had to wear a tight binder on the abdomen for support and it wasn't fun. I think I took pain meds for 3-4 days before moving to Tylenol for pain. But the result continues to be optimal in my opinion to this day.

Personally I am glad I did the reconstruction. I have a large scar on the flap but bras cover it, and I have enjoyed having smaller, more manageable breasts. I was too large since age 14, with the dents in my shoulders from the bra straps to prove it.

I did not consider having a double mastectomy because there was no medical reason to do so. I know another survivor who did so without reconstruction, and she was also very happy with her decision.

Hope my story is helpful. Please feel free to ask me any questions.

 

[snappy]

One other thing, my understanding is that a more aesthetically pleasing result (less obvious scarring) is an advantage to immediate reconstruction since some of the skin can be spared. However, my opinion is that a mastectomy and reconstruction is a lot of surgery to endure at one time and a longer time is spent under anesthesia. However, I was not working at the time so time away from work necessitated by two surgeries wasn't problematic. I also had a great support network. I do think a double mastectomy is a lot of surgery all by itself, with emptying the drains, and taking care of the wounds as they heal.

I think it is a very personal decision and I wish you the best.

 

[kirstenb1]

Snappy, thanks so much for your detailed reply. Right now the thought of extra surgery and prolonged healing time makes me queasy. The surgeon did mention that the abdominal surgery is something that sometimes patients don't realize is a big deal. I appreciate your help!

 

[Feralpeg]

Before I say anything else, let me say that the decision to have reconstruction is very personal and I would never dream of giving my opinion on it. That being said, I will share my experience because knowledge is power and I think a person needs as much info as possible when making an important decision.

I had a modified radical mastectomy when I was 31. Six months following the mastectomy, I began the reconstruction process. I had tissue expanders for several months followed by surgery to place the implants. I had to have an implant under my remaining breast to achieve symmetry.

I had no problems for the first five years. Then, I began experiencing problems. I had a burning sensation in both breast. All the massaging did not prevent scar tissue formation. By the 10 year Mark, the breast that was only an implant began to sag. The doctor told me it normally happens due to the weight of the implant.

By the 15 year mark, I had enough pain and was so unhappy with my appearance that I was ready to have them removed. Unfortunately, my insurance would not cover it.

At 26 years, one of the implants ruptured. They were silicone. The insurance agreed to pay for removal. The surgeon told me he had to scrape silicone that had adhered to my tissue. Apparently, the implant had been leaking a long time.

I decided to not have new implants put in. The doctor told me that all implants have a lifespan. Eventually, they all fail or lose shape. At this point in my life, I didn't want to face problems again at a later date.

Unfortunately, I did. Thirty years after my original mastectomy, my cancer returned in the scar area of the original mastectomy. I asked my oncologist if having the implant leaking could have caused the reoccurance of my cancer. He said no. In fact, if I hadn't had the implant removed, I might not have realized the cancer had returned until it had progressed. I had a chest wall resection. Once I finished chemo and radiation. My other breast was removed.

I know this is a lot to read and most do not have my experience. I also totally understand wanting reconstruction. When I hear anyone considering implants I always suggest they just ask lots of questions.

I support you in whatever decision you make and please know that you are in my prayer I say every night for all the ladies on this thread.

By th way, I was on Tamoxifen for 4 and a half years. I went off a little over a month ago. It was making my blood pressure high. I had tried two other drugs prior to Tamoxifen and had the same problem, so I am done.

 

[kirstenb1]

Thanks Feralpeg. I'm so sorry you've had so much to deal with. I had no idea you could even get breast cancer after a mastectomy. It must be difficult to even type all that out, let alone having lived it. You are in my prayers also.

 

[maxaroni]

I firmly believe that reconstruction is a personal choice - no right or wrong. My mom had a mastectomy and opted for a prosthetic. She wasn’t too happy with it but didn’t want more surgery. Sometimes she looked a little lopsided. A friend of mine decided to go for a double mastectomy and not have reconstruction. She is very comfortable in her own skin and doesn’t use prosthetics. She uses a training bra! It was a bit hard for her at first but 8 years later, she is still happy with her decision.
Go with your gut as you know yourself better than anyone.

(((HUGS)))

 

[kirstenb1]

Thanks Maxaroni!! I'm thinking it will be hard at first, but hopefully as I get used to the new me, it will get better.

 

[Elmo9607]

Hello all!

I realize it has been a very long time since I was here. Every once in awhile I come on here to lurk and read Mom's posts! I felt compelled to do a quick update.

Mom has been gone for two years now. In some ways it feels like longer.

Last October I got married to my wonderful boyfriend, we have been together 7 years as of this January! We picked October to continue the trend of both my parents and sister getting married in that month. It was a lovely small wedding on a Sunday morning. We honeymooned in Disney and finally got to experience Food & Wine! Mom would have been so tickled to know that's what we picked.

My dad has been dating someone for a little over a year now. When he broke the news I was devastated and very angry. However she is a very nice person and they are so cute together! It is still hard to deal with sometimes but it's getting easier. They met at work when working on a committee together. As far as his legs...they healed wonderfully and although I believe there may be a bit of arthritis forming, he does not need any aids to walk!

My sister had another baby around Thanksgiving in 2016. Her name is Cora and she is very unlike Zoe...very easygoing! Haha. Zoe will be starting preschool in September. Where has the time gone!?

I want to wish everyone here good luck in their fights and I'm so happy to see the love and support that this thread has had in the past is still going strong!

 

[kittylady1972]

Hello all!

I realize it has been a very long time since I was here. Every once in awhile I come on here to lurk and read Mom's posts! I felt compelled to do a quick update.

Mom has been gone for two years now. In some ways it feels like longer.

Last October I got married to my wonderful boyfriend, we have been together 7 years as of this January! We picked October to continue the trend of both my parents and sister getting married in that month. It was a lovely small wedding on a Sunday morning. We honeymooned in Disney and finally got to experience Food & Wine! Mom would have been so tickled to know that's what we picked.

My dad has been dating someone for a little over a year now. When he broke the news I was devastated and very angry. However she is a very nice person and they are so cute together! It is still hard to deal with sometimes but it's getting easier. They met at work when working on a committee together. As far as his legs...they healed wonderfully and although I believe there may be a bit of arthritis forming, he does not need any aids to walk!

My sister had another baby around Thanksgiving in 2016. Her name is Cora and she is very unlike Zoe...very easygoing! Haha. Zoe will be starting preschool in September. Where has the time gone!?

I want to wish everyone here good luck in their fights and I'm so happy to see the love and support that this thread has had in the past is still going strong!

I'm sorry that I'm too new here to know your story and your mom's...I may have to go through the archives to find that out. I just wanted to say congrats to you on your wedding...October is a great month...my husband and I will celebrate our 20th anniversary October 3rd this year.

I totally emphathize with you about your dad. My mom died after a long cancer battle in February of last year and by APRIL my dad was dating again, which was about the time I got my own cancer diagnosis. I can't even describe to you all of the emotions dealing with my cancer battle, mom's death, my MIL who was also battling cancer (and died in July) and then my dad's dating. I *STILL* get PTSD when my dad visits me sometimes because I worry about what else he will tell me, as dropping the news that he was sleeping with somebody else was pretty horrifying for me. My brother and I had many phone conversations and tears about dad and his girlfriend because to us it was like we were losing him also, which I know seems strange. THIS week my dad is in Maryland where he is helping his girlfriend move, she sold her house and will be living with him in North Carolina now, just over a year after my mom died in that same house that she and my dad built together. Visiting there in the future for my family will be very odd because there will be somebody else living there now who really is a stranger to us. We keep trying to think about DAD first in all of this, I mean at 72 years old he deserves to be happy and not lonely so we just have to stay strong about all of this. (((HUGS))) to you as well while you go through the same struggles.