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Old 04-07-2015, 10:48 AM   #1
sddinkinsmom
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hysterectomy/ooph..to change to AI

I am 37yr. old and my ER score was 8 and PR score 8. With tamoxifen for 7 months and cont. to have very frequent periods. Have had 2 uterine biopsy's both negative, but thick wall. Ovaries working overtime. They would like to do a total hysterectomy, bilat. oophorectomy. I have had a hard time with the tamoxifen, terrible mood swings.....all over the board. Has anyone felt better after a oophorectomy/hysterectomy after having a very hard time on tamoxifen? I am very worried I will feel worse. There was talk of Lupron, but with U/S results and ovaries working so hard, and high ER, PR scores the recomend this. Anyone else?



Jan. 15th 2014Dx with Her 2 + ER+ PR+ entire right breast tumor..10cm in craniocaudal dimension.
Grade 3.
Right axillary lymph node 2.3 cm. and biopsied positive for HER 2. Multiple enlarged right lymph nodes. Enlarged lymph node in pectoralis muscle.
Jan. 2014 PET scan done, no other organ involvement.
29 Jan. 2014 Port placed, 1st round of neo-adjuvent chemo started. Perjeta, Herceptin and taxotere.
April 2014 Admitted to hospital for pneumonia/sepsis.
13 June 2014 bilat. mastectomy.
18 July 2014 start 5 weeks radiation.
18 Aug. 2014 start tamoxifen.
Oct. 2014 Frequent periods, every 2 weeks. Uterine U/S and biopsy. Biopsy negative.
Dec. 2014 dx with lymphedema.
Dec. 2014 right arm infection to lymph system.
23 Jan. 2015 Last dose of Herceptin.
6 Feb. 2015 last reconstruction surgery.
March 2015 lymphedema with a right hand cellulitis.
March 2015 still having frequent periods every 2-4 weeks. Another uterine U/S and biopsy. OBGYN and Oncologist recomend ovaries removed. OBGYN would like to do a total hysterectomy.
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Old 04-07-2015, 08:20 PM   #2
sassy
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Re: hysterectomy/ooph..to change to AI

I too was highly er/pr positive also and did Lupron for four years on the advice of my onc. There are studies that Lupron has some benefit in reducing chances of recurrance. After four years I then had only my ovaries removed.

I will try to find the study on Lupron benefit for you. I think it was presented at SABCS in 2013.

You list your ER and PR at 8. Typically this is given as a percentage. We're you given a percentage of each?

Has your Obgyn said why he prefers a total?

BTW I started out on an AI and did not do Tamoxifen in the beginning.
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
13 YEARS NED!

Last edited by sassy; 04-07-2015 at 08:25 PM..
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Old 04-07-2015, 08:59 PM   #3
sassy
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Re: hysterectomy/ooph..to change to AI

Here is an article on the SOFT trial from Medscape.

http://www.medscape.com/viewarticle/837134#vp_2
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Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
13 YEARS NED!
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Old 04-08-2015, 07:17 AM   #4
Debbie L.
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Re: hysterectomy/ooph..to change to AI

No experience to share. But what about trying ovarian suppression and an AI for awhile, to see if for you -- it's better or worse than Tamoxifen? It would not be such a "burning your bridges" approach. If it was okay, you could proceed with the surgery, and if not -- back to Tamoxifen?

I'm not sure what you mean by "ovaries working really hard" -- can you elaborate?

There would also be another option, I think. You could remove just your uterus with a relatively simple vaginal hysterectomy, which would address the problems of frequent periods and uterine wall thickening. And then you'd still have the options of Tamoxifen vs. ovarian suppression and an AI, whichever turns out to give you less trouble.

Good time for a second opinion at an NCI-designated Comprehensive Cancer Center? Perhaps with an OB/GYN oncologist vs. a breast one?

Good luck, keep us posted.

Debbie Laxague
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Old 04-08-2015, 07:41 AM   #5
sddinkinsmom
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Re: hysterectomy/ooph..to change to AI

Thank you Sassy. My pathology report gives a Allred score for both ER and PR of 8 total. Proportional of 5 and intensity of 3. I did not get a specific percentage. With my research I just understood it as the highest score for both?
I have another appoint. with my OBGYN to discuss in more detail all of this. She spoke with my onc. and they discussed the thought of Lupron for knocking out the ovaries and I did not get a clear pict. of why the Lupron was not the route they wanted to go. She did tell me that with my U/S results and the changes on the uterus from a U/S done in Sept., she would like to take the uterus out b/c she believes the tamoxifen is causing changes that are alarming and possibly, since doing that to go ahead with taking the ovaries at the same time? I am really trying to gather as much info. to ask informed questions. I have 4 small children and the constant running to town (30 min. drive) for multiple dr. appoint. seems to be running me down. Not at all trying to complain, I am just hoping to get a idea if others have had similar experiences. I feel like I am on a rollercoaster with this tamoxifen. Did you have many side effects after they took your ovaries out, after 4 yrs. of Lupron? How did you do with the lupron? I really appreciate your input and any others, so thank you for taking the time for me. I do really need to have another sit down with both OBGYN and onc., we live in a small area and I feel like I run here and ask this question and then run there for the next question....I was just happy I got my OBGYN to call my onc. and talk with him. Thank you again.
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Old 04-08-2015, 08:13 AM   #6
sddinkinsmom
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Re: hysterectomy/ooph..to change to AI

Debbie,
When I mentioned the ovaries working really hard I have been having frequent periods. Btw. every 2-4 weeks. I had only one and 1/2 month of no periods while I went through my "bad chemo" and then got it back within 3 weeks after chemo done. Then I did radiation, then started tamoxifen. So from June of 2014 till now, I have been having a period every 2-4 weeks. With both of my U/S the dr. said that I have follicles that have ruptured and I understood that as with more frequent periods I was ovulating more frequently?
I read these posts about how womens onc. don't want them menstrating at all and definatly not frequently. I feel frustrated. Every time since June that I told my onc. that I was having these frequent periods he would say "huh, I don't know why you are having such frequent periods. Have you talked with your OBGYN?" So I went and saw her in the fall and then again in March. I have never had my estrodial level checked as so many other women have. Am I over-reacting or do I need to find a different onc. I was told after my herceptin was done that they wouldn't do any follow up scans b/c they haven't found them to be cost effective in finding reccurances? Feeling frustrated, not sure what I need to do?
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Old 04-08-2015, 10:37 AM   #7
Jackie07
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Re: hysterectomy/ooph..to change to AI

Hi,

Have you done the BRCA1 and BRCA2 genetic testing?

I had a total hysterectomy/oophorectomy 3 years after I had been treated for BC recurrence. The surgery was approved based on personal and family cancer history (Lynch Syndrome) and BRCA test result. After the surgery, the surgeon told us that the uterus was already showing hyperplesia (thickening of the wall?) Thought I would be switched to an AI after the surgery, but the oncologist wanted me to complete five years worth of Tamoxifen. Then a new doctor arrived right around the five year mark and switched me to Exemestane (trade name Aromasin).

There are more side effects of AIs. Although I've never really experienced much either with Tamoxifen or AI - possibly due to my very injured brain (two brain tumor surgeries and the chemo impacts from two breast cancer chemotherapies).

Tamoxifen works mainly on the the Estrogen in the breast area. AIs would deplete all the Estrogen everywhere in the body (there are other stuff in the body that can be converted into Estrogen after menopause). Either way, be sure to exercise regularly/often and eat a well-balanced diet. I eat a lot of oatmeal with nuts and fruit plus yogurt and milk. So far so good.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

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Last edited by Jackie07; 04-08-2015 at 10:45 AM..
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Old 04-08-2015, 02:52 PM   #8
tricia keegan
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Re: hysterectomy/ooph..to change to AI

Tamox didn't suit me so I just had an ooph and took Arimidex for eight years, a few manageable side effects but no regrets and I felt fine, it was a very easy surgery too.
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 04-08-2015, 04:13 PM   #9
sddinkinsmom
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Re: hysterectomy/ooph..to change to AI

Jackie
I did have the BRCA testing done and I was negative for that. I am so sorry to hear that you had brain injury with tumors and surgery. Thank you for sharing your experience with me. I did make a appoint. to talk it out more with onc. this week and see what he says.
Tricia, thank you so much also for your input. You seem happy that you did it? Will just keep plugging along and hope to make a good informed decision.
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Old 04-08-2015, 04:28 PM   #10
tricia keegan
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Re: hysterectomy/ooph..to change to AI

Yes I am and think its all any of us can do really, you're doing your research and making the right decision for you!
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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