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Advice for 30 year old whose newly diagnosed?

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Katwall View Drop Down
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    Posted: Oct 23 2015 at 4:52am
Hi everyone,

I was diagnosed with TNBC exactly a month ago today. It's stage 2/3 (they aren't 100% sure yet), high grade and 2.3cm. I've just finished hormone treatment for fertility preservation, with 3 (sadly only 3) eggs frozen yesterday. I start AC chemo next week. I'm 30 years old with zero family history of any cancer and for me the anxiety of not knowing what's ahead has been awful. I'm a positive person but have really struggled these past few weeks, especially with waiting for the fertility treatment before chemo. I will have surgery after the first round of chemo in February hopefully, the follow that with 12 taxol.
I live in New Zealand and whilst I've had great support so far, we are a small country so there's no that much information around, especially for younger women. Does any one have any advice? Advice for anything really! What should I expect for the first chemo? How did you cope with working through treatment? Can you eat normally? Is it true the steroids make you gain weight? So many questions. I've been reading some of these posts and feel comforted knowing I am not alone. I would really appreciate your thoughts.

Thanks for reading xx
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Annie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Annie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2015 at 9:19am



    Hello Katwall,   I am so sorry that you are going through this. You are so young as many are with this. First of all there is HOPE!
                     Your anxiety is very normal. I would say try and take one day at a time and one step at a time. You WILL get through this!!!
                     This site is a wealth of information and support that can be a very real help!

                     Some people here have managed to work through some of the chemo and others not. The weight gain can happen. I gained about 15 pounds but it is now off. I found after some of the chemo treatments I did not have an appetite for a few days but it comes back afterwards, at least it did for me. There are so many good meds today that are given to keep a person from nausea and really help in that area.
                     Go easy on yourself and remember to post as often as you like for whatever reason. God Bless and I will keep you in my prayers.

                     Love, Annie



                        
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SarahCinelli Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 12:54am
I am 35 and was also recently diagnosed with TNBC. First time on this site. 
I had a lumpectomy in July (2.5 cm, no lymph node activity, grade 3... I think all TNBC is grade 3)
I started AC chemo every two weeks (dense dose) on September 14. Just had dose 4 today. In two weeks I'll start Taxol. Told I am only getting 4, every two weeks. I just read that 12 is better (weekly I think???) So now I want to talk to my doctor about it. 

I have two young kids, age (almost) 6 and 4. I understand how you feel about just preserving three eggs but things will work out. Your life is the most important right now and there really are so many options. My husband had Leukemia 12 years ago (we were dating at the time) and he was too sick to bank sperm. Years later we tried for a baby and had him tested again and again. We ended up using a known donor and the rest is history. I know it's different because it's my life and what worked for me, and I still was able to conceive and all that, but things will work out in a way that you can't and really don't need to imagine now. Focus on you!!! :)

AC for me was ok. Nausea and butt hole pain mostly. There's drugs for the nausea so it wasn't too debilitating but the constipation followed by diarrhea was the WORST! Take a laxative the day BEFORE you start chemo.. and then for at least three days. Maybe take care of the area with diaper cream or vaseline as a preventative too. And talk to your doctor. 

I did experience some bone pain and mouth sores but they didn't last long. You can brush your teeth and swish with an alcohol free mouthwash (like Biotene) to act as a preventative. If you do get sores my hospital created a "magic mouthwash" and it tastes awful but worked like true magic. I am in Waterloo, Ontario Canada so you could likely ask your doctor to contact my hospital if you don't have anything like it. 

I started losing my hair exactly when I was told I would. At the 2 week mark. And I shaved it just a couple days later (when it was most convenient for my kids, otherwise I ould have been bald sooner). And before then I googled cute chemo hats for women. I found Chemobeanies.biz/ Its a site from the US but they shipped pretty fast and I've had compliments on my two 'head coverings' every time I've worn them out. Other hats looked too 'cancery' to me and I'm not interested in wearing a wig. 

I have gained about 10 lbs so far and it seems like a steady climb, I mean that's only in 1 month. So that part isn't great. I haven't done much in terms of exercise though, don't really feel like it, and some days I eat a lot but I think I can attribute the weight gain to the chemo. One day it'll come off and until then I will have a giant ponch. 

In two weeks I will start Taxol. I heard its overall better than AC but side effects are allergic reaction (which you get meds for) and numbness in fingers and toes and bone pain. Less or no nausea and no GI issues. So at this point I'm saying bring it on. 

Good luck and keep in touch! 
Sarah





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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2015 at 11:17pm
Hi Sarah,
I saw your post somewhere else on the site and I asked you some of the questions you have cleared up in this post.
I wanted to share with you that I had 4 dose dense taxol treatments.  My treatments were just prior to the information about 12 consecutive treatments being better.  I cannot tell you which is best; I only know that I am a 9 year survivor. 
 
Love and God Bless,
Lillie


Edited by Lillie - Oct 27 2015 at 11:18pm
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (1) Thanks(1)   Quote SarahCinelli Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2015 at 7:49am
Thanks for your replies! Congratulations on being a 9 year survivor!
I'll ask my doctor next week about taxol every two weeks versus (4 total) versus every week (12 total).
I can tell you I'm eager about being done with chemo but whatever gives me the best chance I'll take.
Thank you for the friendly welcome aboard!

Sarah
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2015 at 2:13pm
I'm 6 years NED and did the 4 Taxol every two weeks. At the time I was told that if I suffered too many side effects I'd got to the lower dose weekly for 12 weeks. I was grateful I did ok because I wanted chemo to be over as quickly as possible. I'm sure there's a study that says if one's proven more effective than the other? I've no idea, bit what Lillie and I did was the standard recommendation at the time we did it and it worked. Welcome Sarah!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SarahCinelli Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2015 at 11:40am
Great news!  I will be sure to bring it up with my doctor just in case, but I too can't wait for it all to be done! 
Sarah 

p.s. And I hate the word "treatment". It actually makes me gag to think of chemo.
When I think 'treatment' I think facial or manicure. Or breakfast in bed. Not chemo. Gross. 

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2015 at 2:58pm
Dear Sarah,
Sorry to offend.  I've never had a facial, manicure or breakfast in bed.  I would call those "Royal Treatments."
Maybe infusion is a more tolerable word?
 
Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SarahCinelli Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2015 at 3:14pm
Hahahah ok maybe those are royal treatments. I haven't had them all either;)
Sarah
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2015 at 4:47pm
I assume you'll be getting radiation, if you don't call those appointments "treatments" I'm not sure what you'd call them?  Zappings? The radiation staff is going to use the word "treatment" a lot, you might want to get used to it...........

OH LILLIE I want to get  you to a mani/pedi & massage ASAP!  I only get breakfast in bed on vaca, but that's good stuff too!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2015 at 5:05pm
Katwall - I am also sorry you are dealing with this, and at such a young age.  But there is indeed hope.  Everyone reacts to chemo differently, so don't worry too much that you'll experience a difficulty just because someone else did.  I did not gain any weight during chemo.  The AC made me lose my appetite during the days I was supposed to take steroids.  By the time my appetite returned, I was off the steroids, and then I made sure to follow my normal healthy eating practices.  Taxol did not make me nauseated, so I was more challenged to keep my eating under control in that period, especially during the days I was taking steroids.  I also did not let up on my normal exercise routine throughout chemo, even though I had to push myself harder.  I am a firm believer that exercise during chemo helps hugely in keeping you strong and getting you through and keeping weight stable.  I know several other women who got through chemo without gaining weight.  I also worked a normal schedule throughout chemo, except for the one day every other week when I got infusions.  Another suggestion for getting through chemo is to keep looking to this community for advice and support.  There is so much knowledge and love here!
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2015 at 8:31pm
Just an update on my wife: She has Stage 3B-C. TNBC/Squamous tumor 4-5cm (MRI) and we thought 3-4 lymph nodes enlarged (MRI) She was given Carboplatin-Gemzar chemo. (she can't have Taxol much b/c she had it in 2008)

She had masectomy surgery yesterday- the sentinel lymph nodes " are clear" now. I think the surgeon just removed the 2 sentinel ones that showed on the nuclear screen. Chemo apparently killed cancer in nodes.

The tumor got "clear margins" It shrunk from about 4-5 cm to .9 cm from the chemo, we don't know yet if a total complet pathological response, so...

She left her port in, even though it's on the surgery side.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 04 2015 at 3:37am
Dear Gordon,

please extend my best wishes to your wife for a smooth, uneventful recovery. 

Katwall, I helped a woman in New Zealand a few years ago and it was very hard to find a TNBC expert. I will write to some friends and hopefully things have changed? In any event, despite no family history of breast/ovarian cancer I suggest you get tested for the 'breast cancer' panel of genetic mutations. If it turns out that you have some 'actionable' mutation that may affect your treatment plan. There should be a cancer genetics expert who should be able to help you. The guidelines in the U.S. are that any woman with TNBC <60 years old should be tested for the BRCA mutation. There are other mutations as well and hopefully someone in NZ can help you get tested.

good luck to you.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2015 at 6:44pm
The pathology report showd the surgeon took out 5 sentinel nodes, and it looks like maybe 2-3 had cancer but the carboplatin-gemzar killed it, the tumor was reduced to 1.5cm from 4-5cm, but STILL had cancer TNBC/metaplastic/squamous. So, it's not a 100% PCR to the chemo. So, tomorrow, the oncologist (Sinclair/Scripps/San Diego) will advise...  the pathology report is vague in that it doesn't say if there was cancer in some nodes, but it was killed, but it seems like that is what it says. It says in all 5 nodes excised, there is no cancer.


Edited by gordon15 - Nov 05 2015 at 6:44pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2015 at 8:05pm
Gordon,

Thank you for sharing this information.  Please let us know how the consult goes tomorrow and if they suggest further treatment.  Wishing you and your wife the best.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2015 at 9:29am
The oncologist told my wife he is leaning towards more chemo. The tumor board meets next Thursday to discuss her case. In the meantime, she's seeing her radia-oncologist to discuss the pathology report and his opinion on radiation or not. now that she's had a masectomy+ 5 sentinel nodes removed.

The Carbo/Gem chemo killed the cancer in 3-4 nodes that showed abnormalities on the imaging. They were clear so he can't say how much or if any cancer was in them but imaging all suggested they were cancerous.

The tumor still had 1.3 cm carcinoma, it shrank from 2.5cm, not the response they were hoping for. At time of finishing chemo the tumor imaged at .9cm. My wife felt it was growing again in the interim up until surgery (about 6 weeks b/c the plastic surgeon was not available) so the excised tumor was 1.3 cm, maybe it did.

He would recommend Taxol weekly for 12 weeks. He said he wants to stop it from going to stage 4. He said something like " Some (doctors) will say we'll just zap it with the cyberknife (?) and remove it... if it goes somewhere else... but it doesn't work like that... it keeps popping up everywhere after that..."

He will send out tissue for chemosensitivity/other agent therapy/ I think genetic testing.

She needs to heal for at least 3 weeks he said... thanks.


Edited by gordon15 - Nov 07 2015 at 9:43am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2015 at 11:58am
Gordon,

It sounds like your wife's onc is being very thorough and diligent.  I'm not a medical professional, but I've always wondered how is someone who doesn't achieve pcr any different from someone who didn't have neoadjuvant therapy?  Meaning, how is a 1.3 cm tumor removed after neoadjuvant chemo any different from a 1.3 cm tumor removed prior to chemo?  If the tumor removed first needs chemo, why doesn't the non-pcr tumor?  

Please keep us posted and hope your wife's healing from surgery continues without any complications.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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