In never rainsbut it pours

Status
Not open for further replies.
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!
 
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.
 
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.
 
As an aside, steve had an eyelid cancer 10 yrs before his als diagnosis
 
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
 
Thinking of you Wendy! You will make the right decision for you... HUGS!
 
Hugs Wendy, I am so sorry to hear this.
 
Prayers for you Wendy as you navigate these waters. I think it all depends on your rate of progression.
 
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
 
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.
 
That's fantastic news, Wendy. I am so happy for you.

Sharon
 
That is GREAT news!!
 
Best news I have heard all day! So happy for you and your family Wendy!
 
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!
 
Doing happy dance for you, Wendy!!!!!! That's a relief.
 
Status
Not open for further replies.
Back
Top