Old 07-17-2017, 04:41 PM #16 (permalink)
Senior Member
 
Join Date: 2013
City: Fort Wayne
State: Indiana
Country: US
Diagnosed: 11/1985
Interest: I have been diagnosed with ALS.
Posts: 607
Diane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of light
Diane H Diane H is offline
Senior Member
Join Date: 2013
City: Fort Wayne
State: Indiana
Country: US
Diagnosed: 11/1985
Interest: I have been diagnosed with ALS.
Posts: 607
Diane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of lightDiane H is a glorious beacon of light
Default Re: In never rainsbut it pours

Wendy, I don't know how fast your ALS is progressing and that is probably the key thing. I can only suggest that you go at least as far as the biopsy. It could turn out to require only a lumpectomy and Femara, which doesn't have any miserable side effects.

I have been through the same thing, Wendy. I didn't tell any one about the lump in my breast, thinking as you probably are, that I couldn't tolerate the treatment, and it was rather late in my ALS to bother. I was on a ventilator by then, but still satisfied with my quality of life and still progressing extremely slowly. But I didn't want to deal with breast cancer, damn it!

When I started to have painful twinges in my breast fairly often, I thought I would just wait until I needed pain medicine, then call hospice, and when I had enough I would have the ventilator discontinued and slide away on a cloud of morphine and heavy sedation. It was a good plan until a small lesion showed up on my breast. I knew that in time it would open and begin to release fluid, enlarge and probably smell bad. I didn't want my husband to have to deal with that -- but I was still not in pain and still enjoying life. So I told him that the lesion was on a lump I hadn't told him about. My plan then was to have the breast removed, and see if that delayed the pain/draining yuck/hospice/death thing, and give my family time to prepare for a decline much more rapid than my ALS was edging me along at.

So a mammogram was followed by a biopsy and, of course, it was cancerous. Or I should say, they were cancerous. There were two lumps, one of them large enough to bump me up a notch on the breast cancer scale. Well, that didn't particularly matter to me. I had the mastectomy, not fun but good pain meds! The pathology report showed no lymph node involvement (though the final report said there were some cells in one of nineteen nodes). And the tumors were HR+ meaning that any remaining cells could be treated with Tamoxifen or Femara, pills without the side effects of full chemo. I told the oncologist that I would not have chemo because I would be a bad candidate. I had pseudomonas in my lungs, not an active infection, but the chemo would lower my white blood count and the sleeping infection would activate. I would have very severe, difficult to treat, and probably fatal pneumonia. Why go through the nausea and other side effects of chemo if that was the very likely result? The oncologist was a little flustered as to what to do because the minimum recommended treatment was definitely chemo. I wasn't crazy about the idea of radiation, but I could quit that early if it was awful. So that and Femara were now the plan.

After the incision healed, I began radiation. The first visit was to calibrate the machine to deliver the radiation to the area needed. It was awful because I had to lie with my arm up across the top of my head. My shoulder hadn't bent that far in ages and it reduced me to tears and begging them to hurry. I refused to start the treatments until I had time for a few weeks of exercises to get my shoulder loosened up. The treatments were fast and painless. The eventual radiation burn on my chest looked awful, but the creams I was given worked very well. The fact that I couldn't move around probably helped! After 6 weeks of treatments 5 days a week, I was done and only beginning to notice a little fatigue.

The end result? Seven years and cancer free!
Diane H is offline  
Thanks from
WendyWooG (07-18-2017)
Old 07-17-2017, 06:42 PM #17 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,787
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,787
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: In never rainsbut it pours

Dear Wendy,

I understand your decision and your reasoning. Sometimes, it's an impossible decision. Please just know you are in my thoughts and prayers.

Dear Diane,

Thank you for presenting a clear case analysis of what you went through and your rationale throughout the whole thing. We're very fortunate to have a health care provider as a PALS. You have contributed so much to this forum and I always refer new PALS to your web site.
KimT is offline  
Old 07-17-2017, 07:35 PM #18 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,441
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
gooseberry gooseberry is offline
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,441
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
Default Re: In never rainsbut it pours

Wendy, If you are going to do a biopsy talk to the doctor about risk factors and genetics. If you have any children, it may be important down the road.
gooseberry is offline  
Old 07-17-2017, 07:36 PM #19 (permalink)
gooseberry's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,441
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
gooseberry gooseberry is offline
Extremely Helpful Member
gooseberry's Avatar
Join Date: 2014
City: Pit of hot
State: FL
Country: US
Interest: I lost a loved one to ALS/MND.
Posts: 3,441
gooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to beholdgooseberry is a splendid one to behold
Default Re: In never rainsbut it pours

As an aside, steve had an eyelid cancer 10 yrs before his als diagnosis
gooseberry is offline  
Old 07-18-2017, 02:14 AM #20 (permalink)
WendyWooG's Avatar
Senior Member
 
Join Date: 2016
City: Stevenage
State: Hertfordshire
Country: Uk
Diagnosed: 07/2016
Interest: I have been diagnosed with ALS.
Posts: 516
WendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of light
WendyWooG WendyWooG is offline
Senior Member
WendyWooG's Avatar
Join Date: 2016
City: Stevenage
State: Hertfordshire
Country: Uk
Diagnosed: 07/2016
Interest: I have been diagnosed with ALS.
Posts: 516
WendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of light
Default Re: In never rainsbut it pours

Thank you Marty and Dianne for sharing your stories, it's very helpful and very reassuring.

I really appreciate the support from everyone, I have a consultant appointment and mammogram on the 28th. I will listen carefully to the experts and make some decisions based on their opinions.

I am a way down this route now, I am limb onset with the als it seems to have progressed fairly averagely. I have lost the use of legs and one arm and I have use of my right arm from elbow down. The trunk muscles are going and I use a Nippy bipap at night only. My quality of life is good at the moment and bulbar symptoms are minimal, hence me not wanting to do anything that will make me feel poorly and spoil that time.

Much love to you all

Wendy xx
WendyWooG is offline  
Old 07-18-2017, 07:28 AM #21 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,404
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
soonerwife soonerwife is offline
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,404
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
Default Re: In never rainsbut it pours

Thinking of you Wendy! You will make the right decision for you... HUGS!
soonerwife is offline  
Old 07-18-2017, 10:57 AM #22 (permalink)
Kristina1's Avatar
Member
 
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 389
Kristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the rough
Kristina1 Kristina1 is offline
Member
Kristina1's Avatar
Join Date: 2017
City: Grafton
State: MA
Country: US
Diagnosed: 03/2017
Interest: I have been diagnosed with ALS.
Posts: 389
Kristina1 is a jewel in the roughKristina1 is a jewel in the roughKristina1 is a jewel in the rough
Default Re: In never rainsbut it pours

Hugs Wendy, I am so sorry to hear this.
Kristina1 is offline  
Old 07-18-2017, 11:41 AM #23 (permalink)
Member
 
Join Date: 2016
City: Hillsboro
State: OR
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 269
KW1234 has a spectacular aura aboutKW1234 has a spectacular aura aboutKW1234 has a spectacular aura about
KW1234 KW1234 is offline
Member
Join Date: 2016
City: Hillsboro
State: OR
Country: US
Diagnosed: 10/2016
Interest: I have been diagnosed with ALS.
Posts: 269
KW1234 has a spectacular aura aboutKW1234 has a spectacular aura aboutKW1234 has a spectacular aura about
Default Re: In never rainsbut it pours

Prayers for you Wendy as you navigate these waters. I think it all depends on your rate of progression.
KW1234 is offline  
Old 07-28-2017, 05:31 AM #24 (permalink)
WendyWooG's Avatar
Senior Member
 
Join Date: 2016
City: Stevenage
State: Hertfordshire
Country: Uk
Diagnosed: 07/2016
Interest: I have been diagnosed with ALS.
Posts: 516
WendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of light
WendyWooG WendyWooG is offline
Senior Member
WendyWooG's Avatar
Join Date: 2016
City: Stevenage
State: Hertfordshire
Country: Uk
Diagnosed: 07/2016
Interest: I have been diagnosed with ALS.
Posts: 516
WendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of lightWendyWooG is a glorious beacon of light
Default Re: In never rainsbut it pours

Yaaay
Just an update, all tests and scans done and I have the all clear. It nothing to worry about and the whole family is hugely relieved. Happy WhEelchair pirouettes being done here.

Wendy xx
WendyWooG is offline  
The Following 4 Users Say Thank You to WendyWooG For This Useful Post:
gooseberry (07-30-2017), Jrzygrl (07-28-2017), KateEmerson (07-28-2017), Statius@ (07-30-2017)
Old 07-28-2017, 06:33 AM #25 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,355
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,355
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: In never rainsbut it pours

Oh Wendy! So very very happy! Thank you for sharing. Doing leaps of joy ( in my head)!

Do something extra special this weekend to celebrate.
Nikki J is offline  
Old 07-28-2017, 07:15 AM #26 (permalink)
Member
 
Join Date: 2016
City: Pittsburgh
State: Pa
Country: US
Diagnosed: 11/2011
Interest: I am a caregiver for someone with ALS/MND.
Posts: 411
pittsburghgal is a jewel in the roughpittsburghgal is a jewel in the roughpittsburghgal is a jewel in the roughpittsburghgal is a jewel in the rough
pittsburghgal pittsburghgal is offline
Member
Join Date: 2016
City: Pittsburgh
State: Pa
Country: US
Diagnosed: 11/2011
Interest: I am a caregiver for someone with ALS/MND.
Posts: 411
pittsburghgal is a jewel in the roughpittsburghgal is a jewel in the roughpittsburghgal is a jewel in the roughpittsburghgal is a jewel in the rough
Default Re: In never rainsbut it pours

That's fantastic news, Wendy. I am so happy for you.

Sharon
pittsburghgal is offline  
Old 07-28-2017, 07:18 AM #27 (permalink)
DaChief's Avatar
Member
 
Join Date: 2016
City: West Melbourne
State: Florida
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 191
DaChief is on a very distinguished roadDaChief is on a very distinguished road
DaChief DaChief is offline
Member
DaChief's Avatar
Join Date: 2016
City: West Melbourne
State: Florida
Country: US
Diagnosed: 12/2016
Interest: I have been diagnosed with ALS.
Posts: 191
DaChief is on a very distinguished roadDaChief is on a very distinguished road
Default Re: In never rainsbut it pours

That is GREAT news!!
DaChief is offline  
Old 07-28-2017, 07:57 AM #28 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,404
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
soonerwife soonerwife is offline
Very Helpful Member
Join Date: 2016
City: Cleveland
State: Oklahoma
Country: US
Diagnosed: 10/2015
Interest: I lost a loved one to ALS/MND.
Posts: 1,404
soonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to beholdsoonerwife is a splendid one to behold
Default Re: In never rainsbut it pours

Best news I have heard all day! So happy for you and your family Wendy!
soonerwife is offline  
Old 07-28-2017, 02:35 PM #29 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,775
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: In never rainsbut it pours

I'm definitely doing the happy dance! I'm so sorry you all had the stress of worrying over this - I can't even imagine how many kinds of scenarios you all went through!

Still the fact they were all just scenarios and this can be thrown in the bin is the most important thing!
affected is offline  
Old 07-28-2017, 04:02 PM #30 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,787
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,787
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: In never rainsbut it pours

Doing happy dance for you, Wendy!!!!!! That's a relief.
KimT is offline  
Closed Thread

Tags
biopsy, family, lump, tests, vent, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off


All times are GMT -5. The time now is 06:04 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016