Dis Breast Cancer Survivors Part IV - GAGWTA

[kirstenb1]

wow, amazing that you went to WDW so soon after your BMX!!!!
no way could i have done that...

i had my BMX on june 18th....so i'm at 5 weeks out....
i find it pretty painful - the pulling and pressure....
i have pretty good range of motion - complete on my left (the prophylactic side) and almost complete on my cancer side where he also did an axillary node dissection..

i'm glad i went to this surgeon - he tends to the conservative, so even though the sentinel node was negative, he still did the axillary node dissection since i had had cancer in the nodes in the original diagnosis..

as it turned out, though the sentinel node was negative, it was what is referred to as a false negative, because two of the other 10 nodes that were removed still had cancer in them, as did the adipose tissue (AKA fat) around the nodes ...

so bottom line, in addition to the radiation that i knew i'd have to have, i'll have to have another 6 months of chemo...(although it's possible that the oncologist always planned on giving me more chemo after the radiation because i'm triple negative)...

i was pretty bummed about it last week when the pathology report came back, but i'm ok now....managed to go back into denial which i'm pretty good at...

good thing i reserved the big family trip for summer 2019!! i should be ok to travel by then...

i'm going to the beach tomorrow with DH and our 4 year old grandson..
i forgot to look for a new bathing suit so i just mutilated my old one...
cut out the underwire bra in it....kind of funny...
it doesn't fit very well, but in any case, i always wear a rash guard over my suit, so it doesn't really matter...
i have to find myself a speedo ...i'm guessing that will fit best...

.

.

Thanks, but mine was a simple BMX with just sentinel nodes. All the extra nodes that you had removed would slow me down big time! Praying for your treatment to go well. I haven't even dealt with swimsuit tops yet. I just wear a heavy patterned rash guard top, and honestly no one seems to notice. Hope you had fun at the beach!

 

[disneyholic family]

Thanks, but mine was a simple BMX with just sentinel nodes. All the extra nodes that you had removed would slow me down big time! Praying for your treatment to go well. I haven't even dealt with swimsuit tops yet. I just wear a heavy patterned rash guard top, and honestly no one seems to notice. Hope you had fun at the beach!

the pain pulling and tension and that "iron bra" feeling aren't because of the nodes.
it's the entire chest area...
you're really lucky if you don't have that as i know lots of people do..

 

[kirstenb1]

Yes, I did have that and I agree it is/was awful. I had very poor range of motion, so I'm currently doing PT. It has mostly gone away due to the stretching exercises, but some still lingers. I"m a little afraid that cold weather will stir it back up. We went to Aquatica, and the resort pool a lot, and it seemed to help loosen up the tightness. We've been going to WDW forever, and I just rolled the dice, and said hey whatever. The trip wasn't my best trip, but it was doable. At this point, I've accepted the iron bra feeling, and take aspirin every morning. I have Gabentin for the nerve pain, but the side effects of it worry me.

 

[Pea-n-Me]

GAGWTA

I'm sorry you guys are dealing with that.

 

[disneyholic family]

Yes, I did have that and I agree it is/was awful. I had very poor range of motion, so I'm currently doing PT. It has mostly gone away due to the stretching exercises, but some still lingers. I"m a little afraid that cold weather will stir it back up. We went to Aquatica, and the resort pool a lot, and it seemed to help loosen up the tightness. We've been going to WDW forever, and I just rolled the dice, and said hey whatever. The trip wasn't my best trip, but it was doable. At this point, I've accepted the iron bra feeling, and take aspirin every morning. I have Gabentin for the nerve pain, but the side effects of it worry me.

i only take advil once a day at most...some days i don't take at all..
i'm not willing to take anything more than that for pain/nerve issues...
i'm allergic to morphine, so i'm always afraid of taking anything other than advil/tylenol...

my incision isn't closed enough yet for a pool....when we went to the beach on tuesday, i only waded, didn't go in deep..

.

 

[snappy]

I am sorry to hear about the post surgery issues you ladies are dealing with. My surgery was eon’s ago, May 2004, but I remember the ancillary discomfort keenly. I too had a conservative surgeon, and he did a wonderful job with the incision. Luckily my 18 modes were clear but I did understand his thoroughness as my DCIS was throughout the breast with one very minute area of invasion detected on the biopsy. I didn’t have formal PT but I did the exercises recommended at the hospital religiously. I remember doing the exercises even a year later, at least the one where you hold your affected harm above your head to promote fluid coming down. For some crazy reason I distinctly remember doing that exercise while waiting on a bench at the Space mountain exit for my family to get off. Fun memory! That had to be May, 2005, as we didn’t venture to Disney in 2004.

Good luck with your continued treatments and recuperation.

Happy wedding, Mary Ann ! Is your leg healed?

 

[disneyholic family]

i do the exercises they gave me at the hospital religiously too...and they definitely help...
i have full range of motion....just feels like i'm still wearing a bra...such an odd feeling...
interestingly, my 4 year old grandson totally doesn't notice that i'm flat as a board...
he hugs me, lies on me when we watch tv together.....yet hasn't said a word..
it can't possibly be as comfortable as before (i was pretty darn big, so he had a nice pillow effect there)...

just interesting...and i go with my nearly bald head as is (no head covering)....he doesn't seem to mind that either...
.

 

[Feralpeg]

I had very little trouble with range of motion after my mastectomies, but I've have had a hard time with range of motion and a tight, pulling sensation since my chest wall resection. They removed so much tissue that I cannot lift my left arm above my shoulder level. It will feel okay for awhile and then I get that really tight, uncomfortable feeling. I also have pain down through my side on a regular basis. But, it's so much better than the alternative!

 

[disneyholic family]

I had very little trouble with range of motion after my mastectomies, but I've have had a hard time with range of motion and a tight, pulling sensation since my chest wall resection. They removed so much tissue that I cannot lift my left arm above my shoulder level. It will feel okay for awhile and then I get that really tight, uncomfortable feeling. I also have pain down through my side on a regular basis. But, it's so much better than the alternative!

why did you have to have a chest wall resection?
so sorry you're having to deal with it..

i have that really unpleasant tight pulling sensation - people have told me it's because my scar and skin adhere to the muscle, since there's nothing in between, no fat and no fascia over the muscle...
i hope it eventually goes away..

 

[snappy]

I was told to massage all down the scar line, on either side of the incision to keep the skin from sticking. Massaging seemed to loosen it up.

 

[snappy]

I was very concave. Surgeon was very very thorough.

 

[disneyholic family]

I was told to massage all down the scar line, on either side of the incision to keep the skin from sticking. Massaging seemed to loosen it up.

i do that every day in the shower....feels really good with warm water on the scar area

 

[snappy]

I used a high quality cream and also thought it was relaxing to do this. I started before the scar was healed by going on either side of it and continued after healed to try to keep the scar and skin somewhat loose. I don’t think it changed the look of the scar much but I did end up a pretty flat and thin scar.

 

[Feralpeg]

why did you have to have a chest wall resection?
so sorry you're having to deal with it..

i have that really unpleasant tight pulling sensatio.

30 years after my first mastectomy, my cancer returned in the scar from the original surgery. I actually noticed a change in the scar a few years earlier and went to several doctors. They all dismissed it as just a change in the scar. It really itched and had gotten very thick and continued to get larger. I finally went to a plastic surgeon who did an immediate biopsy. It was cancer and had extended well across the left portion if my chest.

The surgeon did the resection on an attempt to get it all. He could not get clean margins and I was running out if tissue. I am stretched very thin on that side. The surgeon actually told my family that I would not be able to stand up straight after the surgery. I do, but it is somewhat uncomfortable.

Tests revealed it was the same cancer I'd had 30 years before. So, I had chemo, radiation and they removed the other breast.

 

[disneyholic family]

30 years after my first mastectomy, my cancer returned in the scar from the original surgery. I actually noticed a change in the scar a few years earlier and went to several doctors. They all dismissed it as just a change in the scar. It really itched and had gotten very thick and continued to get larger. I finally went to a plastic surgeon who did an immediate biopsy. It was cancer and had extended well across the left portion if my chest.

The surgeon did the resection on an attempt to get it all. He could not get clean margins and I was running out if tissue. I am stretched very thin on that side. The surgeon actually told my family that I would not be able to stand up straight after the surgery. I do, but it is somewhat uncomfortable.

Tests revealed it was the same cancer I'd had 30 years before. So, I had chemo, radiation and they removed the other breast.

that is so scary - that you went to doctors and they just pooh poohed it...
that happened with my sister with her first cancer (small cell lung)..
the family doctor totally screwed up..
my sister complained about difficulty breathing and wheezing (two classics symptoms of lung cancer)..
but she gave my sister an inhaler telling her it was asthma....which my sister had never had...
then my sister complained again.
so the doctor told her that she was overweight and if she lost weight she would stop wheezing...
after an entire year of this, my sister went to japan on business..
so when she came back, the doctor suggested an xray since at the time there was a bird flu in japan..
so they took an xray and found very very very advanced small cell lung cancer...
malpractice in a word...

.

 

[luvmarypoppins]

My heart goes out to you all dealing with these post surgical issues

Tomorrow I am getting the stitches out. Say a prayer! I don't think this will go well. There is still a little blood when the bandage is changed which means the wound has not really closed completely, sigh.

I hope a plastic surgeon is not in my future. Dh leaves tues for 10 days to the west coast, then there is the rehearsal dinner the 18th and the wedding the 26th

GAGWTA

 

[Feralpeg]

LMP, thinking of you!

 

[disneyholic family]

My heart goes out to you all dealing with these post surgical issues

Tomorrow I am getting the stitches out. Say a prayer! I don't think this will go well. There is still a little blood when the bandage is changed which means the wound has not really closed completely, sigh.

I hope a plastic surgeon is not in my future. Dh leaves tues for 10 days to the west coast, then there is the rehearsal dinner the 18th and the wedding the 26th

GAGWTA

how did it go? i hope there's no plastic surgeon in your future either!!
.

 

[snappy]

Hope you received good news today LMP’

 

[Dancind]

Haven't checked here in a while, sorry! Good to see the familiar faces.

I am very familiar with the "iron bra" feeling from UMX in 2012. Had bought a few super comfortable bras with filling on one side, front close, from TLC. They aren't making them anymore. Now what do I do? Mine is more lymphedema than the scar I think, lost a lot of nodes.

Posted months ago that I was having CT Scan and MRI for a chronic cough. It wasn't cancer but didn't give any answers. Finally figured out it's a sulfite allergy and have cut wine intake way back. My last guilty pleasure, sigh. But at least the cough is under control.

Glad Kendall has answers but that's a tough one. I hope the new med does wonders for her.

LMP, congrats on the wedding and I hope your leg heals!