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Old 02-12-2012, 03:46 AM   #21
norkdo
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Re: Two beloved voices silenced

Rich:
your post is insensitive. You coyly wheedle around the fact there is competition between cancers. do u really want to hear a response? many of us on here are in a weakened state and this is insensitive claptrap. You know darn well there is a war for every fundraising dollar and you, my dear, are in the wrong camp. I donated tons, in the days when i had money to Aids. Now that Aids in the west, at least, not in Africa and all over the world, raised enough money to progress wAY ahead of b.c, the number two killer of the women it is our turn. period.
We dealt with the most threatening health problem, Aids. Poor people now still die from Aids but in the West, Aids mortality has really dropped. Now we deal with the next biggest threat after heart attacks to women: b.c. our turn. period.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011

mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.


I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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Old 02-12-2012, 09:14 PM   #22
Rich66
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Re: Two beloved voices silenced

Wow,
Sorry you took it that way. If you're cool with a competition between cancers, so be it. Maybe having dealt with my Dad's prostate cancer simultaneously with my mom's breast cancer, shortly after my siter-in-law's Ovarian cancer...I have my own personal perspective. Who's "turn" is it? Hell..every cancer patient's turn.
I happen to think the most benefit for all will happen when the focus is on commonality between cancers and ways to use that against cancer. As an a example, your donations to AIDS research years ago may have indirectly helped breast cancer. Viracept, an early AIDS drug has been shown to have effect against breast cancer cells as well as aiding radiation in pancreatic cancers. Yet, I don't hear much more about it despite an antiviral approach with available and relatively inexpensive meds would be a breakthrough and potentially suggest how it starts. Personally, I get discouraged, not encouraged, when focus goes to counting the myriad diseases within a disease. That strikes me as great for cell labs..but not so great for patients. The research dollars are limited..best to use what's there in a way that benefits the most cancer patients.
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Old 02-13-2012, 07:15 AM   #23
Laurel
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Re: Two beloved voices silenced

Amy,

I too wonder if the whole "pink" movement does not offer up the impression that all breast cancer is these days is a bit of radiation following a not very disfiguring lumpectomy, and a few years of Tamoxifen and off we all go for a long, albeit modestly interrupted by B.C., life. Of course, we here on Her2Support know that is NOT the case, although I am sure we all fervently wish it was. I do appreciate the effort to "speak" through all the pink to make the general public more aware of B.C. Years ago when my Aunt Olive died of this evil disease in 1973 breast cancer was still discussed in low voices if at all.

Goodness, when you think about the social stigma of cancer in general and especially reproductive cancers we have come a long way in acknowledging their existence. There is willingness to discuss prostate cancer and its aftermath, not much mind you, but more than previously. We still whisper about the loss of sexual function that is common with prostate cancer. Actually, come to think of it, even now we only elude to the loss of sexual function that is associated with the treatment of hormone positive B.C.

I will say that Rich is being honest when he asks about support for the treatment of all cancers. Surprisingly so many are interrelated. Herceptin has been used with other cancers that are Her2 positive and has spawned a whole generation of new monoclonal research into beating cancer by not slashing and burning. Conversely, more research is going into other methods, such as nano delivery systems, etc., to beat back the many headed hydra that is cancer.

I have a dear friend who developed a small area on the underside of his 2nd toe. He showed it to his physician at his annual physical. His G.P. shrugged it off as nothing to be concerned about. Two years later he showed it again to another physician in the practice at his annual and this physician was deeply concerned stating he was certain it was malignant melanoma. Sadly, that M.D. was correct. Now my friend has metastatic melanoma which some of you may know is unbelievably deadly. I urged him to get into a trial and he is now down at NCI undergoing a tough, tough treatment with a 30% effective rate which sounds abysmal but in fact is huge in the war against melanoma. At present his prognosis is still very bleak.

We in the cancer community are just that, a community. We belong arm in arm yoked by our mutual accursed state having been called to personally battle this scourge. To all the many warriors pink or not, I am so grateful to their dedication and commitment to this war.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 02-21-2012, 09:42 AM   #24
suzan w
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Re: Two beloved voices silenced

Thank you for this thread...very important stuff. As a 'no-breasted woman' I need courage and support to ''take my shirt off'.
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Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year

as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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