tnbc after mastectomy 6 years ago scared to death of chemo
Hello ladies. Sorry we have to be on this site, but there is strength in numbers and I'm not feeling very strong so I thought I'd ask for support. I was diagnosed 6 years ago with dcis in 1 breast at 34 years old. I opted for bilateral mastectomy with immediate construction. No further treatment. They said I was cured. Found a lump deep in reconstructed breast, not on the scar. Same side as the dcis. I thought it was scar tissue. Turns out it was a .06mm tnbc tumor. I was prepared for radiation, but was devastated to hear that I truly needed chemo for something so small. The first time around I was so strong. This time I am not.I am scared to death of chemo. Not just the hair loss and vomiting, but more importantly, the long term effects it might have. I have arthritis in my feet, shoulders, back, hips etc. and I'm only 40. I think a lot of that is due to my scoliosis surgery at 13. I can't imagine how I will feel during and after chemo. Also scared of weight gain, neuropathy etc. Can anyone tell me if I'm worrying to much about this. I know the goal is to save my life. I am just having trouble seeing past all the misery along the way. I am probably making this worse in my head than the reality. I hope. Thanks.
Comments
-
Oh Mikesgirl17, you poor sweetie. I'm so sorry you've had to deal with this again.
Firstly - take a deep breath, relax a little. Chemo is not as bad as you think. TNBC is very aggressive and needs everything thrown at it.
These days chemo is not all about vomiting the whole time. Everyone is different, but most women get through without serious side effects. I did one type of chemo that can make you very sick (FEC) I took all the antinausea meds I was given and never threw up once. I felt a bit queasy from time to time, but it wasn't too bad. I also did a second round of different chemo (Taxotere) that can give you quite bad bone pain. It was like having a serious bout of the flu.
Yes - the hair loss is almost inevitable, unless you use cold caps (I didn't, but hair loss wasn't a biggie for me). Chemo doesn't automatically mean that you will have long term side effects to deal with. I do have arthritis caused by meds, but that's from Aromatose Inhibitors I have to take as I'm triple positive (the exact opposite to you). You won't have to take the AI's.
Even though your tumour is very small - it's also very aggressive and you need to think about the long term. Short term pain (that's doable) for long term gain.
Honestly, if I was diagnosed again and had to do chemo again, I wouldn't hesitate.
Sending you very warm (((((hugs)))))
Trish
xoxoxo -
Thank you Trish. I could almost feel that hug. You made me feel much better. I have a vivid imagination. It's nice to hear that it might not be as bad as I think. -
Mikesgirl17, I believe that depends on the chemo, and also everyone react to chemo differently. I know it's scary, but wait til you know what kind of treatment your docs are looking at. Many ladies on this board will tell you that treatments will pass. Years from now you will look back and probably don't remember the side effect(s), if any. Sending you hugs and possitive thoughts. -
You are very welcome :-)
We all have vivid imaginations when it comes to breast cancer. You are in very good company on this site - it's a lifesaver. Once you know what your treatment plan will be, go onto the relevant thread to learn more about it. There are also "chemo lounges" on the chemo page you can join and be with others going through chemo at the same time as you.
You can always vent, cry and laugh with others who understand exactly what you are feeling here.
Trish
xoxo -
Thanks fifthyear. -
Mikesgirl,
i am so sorry. **hugs** to you....you will get thru this. we are here for you. -
Thank you junepig. Fifthyear, I do know what my chemo plan is. It will be Adriamycin and Cytoxan. Then Taxol. I start Dec.5. -
I had the same chemo that is recommended for you -- and I would do it all over again if I needed to.
The side effects are not fun, but they are manageable. It's nothing like what we have seen in the movies.
My personal mantra is to do everything I can to prevent a recurrence or metastasis -- or even a different cancer. l eat better than I did before diagnosis (mostly organic), have lost some weight (still need to lose more), take all recommended medications and carry on with a positive outlook! -
Take a deep breath................ Chemo was the scariest part of this for me. It seemed worse than getting a BMX for some reason. Everyone responds differently to chemo. I was surprised but I NEVER had any nausea. I filled three prescriptions for meds for nausea from my MO and I NEVER took one pill! I was shocked! I exercised 5 days a week through all of chemo. Some days I was more tired than others, but I still got my 4 year old son up and ready for school every morning at 6:30am. Chemo was not fun...but do-able for me and many others. I also used cold caps to keep my long hair. I don't have many issues post chemo. I hope you are just as lucky. Good luck....hang in there!
-
Wow. That is great to hear. I'm feeling stronger every time someone posts. Thanks for the encouragement:) -
Mikesgirl - So sorry that you are having to go through this. My chemo was rough, I can't say it wasn't, I never felt nauseous, but had every other side effect in the book. That said, it's done now & I'm feeling pretty good a year later. Also - had I known to come to this board I would have been better prepared - and my sister-in-law had chemo a year earlier than I did and had a very easy go of it. There will people who offer to help you out - I found that if I told them very specifically what help I could use, that it made them feel better and I got the help I needed. The thing about chemo is that it will end and yes, some people have long-term side effects, but the vast majority of us don't - or if we do they are mild. We'll be here for you. Many hugs. -
Mikesgirl, Yes I do know how you feel. I am triple negative and also Grade 3. I also was on the fence about chemo but decided to do it. I will have my #3 infusion on Dec 4. I am taking AC and it really is not that bad. No nausea at all. They give you meds for that. The 5th & 6th day my stomach felt a bit queasy also fatigue but today is 9 days after and I feel fine.
-
Mikesgirl, you can do it. I had a rough time but I'm now a year and a half out and have just one side effect that is lasting that is low magnesium. I just have to take supplements to keep it up at normal. I had SEs during tx and took a few "scenic detours" but everyone is different. Prepare for some SES and be happy if you don't get any. Remember when you are reading the paperwork on your chemo regimine, NO ONE GETS ALL THE SES! !!! They have to list them all even if one person got one from using a new soap. LOL. So be strong and get through it. Join a thread starting the same month as you so everyone is losing hair at the same date! LOL. Also it helps to join the thread for your chemo. You will have people going through it and people who are all done! It helps. Much love. -
Not to be contrarian or anything… I think it's reasonable to ask for a second opinion. Do you have your complete pathology report? What was the grade etc…? I also had tnbc, but my tumor was substantially larger than yours. Triple negative does tend to be much more aggressive. I think it's reasonable to be concerned about side effects - the long term ones in particular. I think it's totally reasonable to ask for a second opinion based on your pathology. If you end up with two matching opinions, then perhaps you'll feel more peace with the plan. The other side of this - triple negative tends to respond to chemo very strongly...
neuropathy - consider using glutamine as a supplement to prevent neuropathy. you take a heaping spoonful swirled in water three times per day for several days after each treatment. i ended up with very little neuropathy and did this for all but one of my 16 chemo cycles… it also helps with some of the other side effects.
weight gain - not every one gains weight - some of us lose weight… staying active is paramount and will help in this regard. talk to your health care team about exercise and so on…
last thing - arthritis… i also have evidence of arthritis already (boo). i think chemo does affect this. some attention to staying active and eating the right foods helps… it's a good thing to discuss with your health care team…
it is doable. i worked through chemo, and my chemo regimen was the same as yours with two additional drugs (i was in a clinical trial). it is doable, and exercise makes it better.
good luck... -
Hi
Here I am planning my next cruise!
5 and a half years ago I was scared stiff at the prospect of chemo after being told I wouldn't need it.
Yes.......it's scary.......and yes.......you'd do anything to avoid it.........but is it worth it.............YES
xx -
Thanks for all your responses ladies. It is very comforting. -
like(mikesgirl17, I also had adriamycin, and cytoxin, and I was given the antineasous meds and did well, until my last treatment, and threw up, But over all wasn,t as bad as I suspected. I am sending you my hugs also!!!!!!!!!!!!!!!!!!!!!!!!. and I am now a 19yr Survivor(Praise GOD).msphil(idc,stage2, 0/3 nodes, L mast,the reconstruction didn,t take, and rads and 5 yrs on tamoxifen)
-
Amen Msphil! Glad to hear such a wonderful survivor's story. Thanks for posting:) -
I was diagnosed at 36 and had to have chemo. To say it scared the ish out of me was putting it mildly. For my first chemo appointment, I needed Xanax to even get there. They also put Ativan in my chemo cocktail because I was hysterically crying as they were prepping me. All I could think of is that I was poisoning myself...and when I read of the side effects, I honestly felt pure terror. PURE TERROR. I totally get where you're coming from.
But chemo ended up not being the big monster I thought it was. They put anti-nausea drugs in my chemo cocktail and gave me pills to take home (turns out I didn't even need the pills). I never felt a moment of nausea. I tolerated it pretty well. I was more tired than usual, got some sores in my nose for the first week after, heartburn, some hot flashes that made it more difficult to sleep (who knew that hair was so important for regulation of body temperature...LOL), and I got a rash after my first chemo but no rash after the other chemo treatments. And it terms of side effects, radiation scares me more.
Good luck. -
I can't add much more encouragement than the other ladies already have! Just know that we've all been in your shoes and hope you do well with the treatments and remember that with every one of them down, you are that much closer to the end! It helped me to verbally say 1 down 5 to go and so on. I actually received a gift and only ended up with 5 treatments instead of 6! Good luck and perhaps keeping a journal of your treatment and recovery will also help you get through it. I know that also helped me. -
How long will chemo treatments take? I was told that chemo was 2 and half hours by the MO. It seems like it will take a lot longer. Just want to be prepared. Thanks. -
Usually there is at least an additional hour of pre-meds. I thought mine would be short and sweet but with all the pre-meds, and time for cold capping, mine was at least a six hour ordeal. -
Hi mikesgirl. Finished 6 months of chemo 3 weeks ago. Did the same chemo as you will be doing. Infusions took about 3 hours. Had nausea so took lots of meds...no pain with Taxol -
Thanks. So it should take 4-5 hours from the time you get to the office and the time you leave? -
Took 3 hours including pre med. -
For me, AC was pretty quick, but Taxol was about 4-5 hours, maybe more (hard to remember). There was a lot more pre-med time with the Taxol. And then, they added Herceptin toward the end, which increased the time even more. I would imagine that different docs & clinics would have different protocols, though. They will probably bring you in for a session before you start treatment (my clinic did), where they give you lots of information about the procedures, and answer any of questions.
Where I had my treatments, we were free to bring anything that would make us more comfortable -- snacks, lunch, blanket (they provided, but my fleecy throw was better), iPod, etc. One woman even brought a portable DVD player & watched movies through treatment! When they started pre-medicating me with Benadryl for Taxol & Herceptin, I usually fell asleep about 15-20 minutes after infusion started -- those recliners were very comfy.! -
Thanks for your replies ladies. It took about 6 hours for me.
-
Juneping, i read your website and am deeply touched. If i may make a guess, are you Chinese? I am a first generation Chinese immigrant, single female in my 40s with no family member here in the States who came here for graduate school in my 20s. Yes i am an educated professional like you are too. and Yes, i am also facing BC and going through treatment right now. I can identify with much of the sentiment you expressed on your website. I also spent most of the first month of my diagnosis pondering and analyzing each and every event in my life that could or could not have caused my cancer. I am also a believer of the Lord, my personal savior. My faith is a lot stronger now that i have time to listen to more sermons online and read the Bible more carefully. I am taking a long break from my work too. Yes, we need to take better care of ourselves and eat better. But i will tell you that i have been the gym rat, athletic, eat 100% vegan organic and 80% raw for 7 years now, so i deduce that for me stress and anxiety with job and relationship had a greater role in causing it. The lack of sense of security, the always struggling sense, the desire to succeed and over achieve, the heartbreaks, the sleepless nights over job and relationship issues, the drive to excel, the codependency issues, the cultural clashes exhibited in our male female relationship interactions, the control freak syndrome, the perfectionist etc. I went to NYC to see David Jubb in 2007 when he was still running a raw food cafe over there, the first thing he said to me was " make requests, not demands" I confess all these sins to my God and I ask him remove these character defects in me. I am going to think positive and tell cancer to kiss my ass and that i am going to kick its ass and scare the shit out of it so it does not come near my door again. Take good care of yourself, many hugs.. Leanne
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team