28 yrs old, triple negative breast cancer

Looking for someone whom can relate during my treatment. Unfortunately many breast cancer support groups have older women who are at a different stage in their lives than myself.

I was hoping to get engaged soon after being with my bf for 2.5 yrs. Instead my diagnosis and treatment is now our focus. Because of my age fertility was a concern for the future and I chose to freeze embryos with my bf. My treatment plan is chemotherapy, lumpectomy, and then radiation.

Looking to get in touch with anyone who can relate in some way with treatment, personal life through diagnosis and treatment, etc.

Comments

  • 5 Comments sorted by Votes Date Added
  • juls4juls4 Community Member
    I'm 33 and just finished treatment for triple negative breast cancer. When you google triple neg, it often seems like a terrible thing, but really every type of BC has pros and cons. My was extremely responsive to chemo (common with triple neg) with more than 90% of the tumor being destroyed (I had chemo before surgery). I had chemo and a mastectomy, no radiation. Definitely find out if you have the BRCA mutation. I had no family history but turned out to have the mutation and that affects screening of BC and ovarian cancer in the future. It can also save the lives of members of your family who may not know they're at risk. I was unable to freeze eggs because I had a fertility issue and it didn't work, so I'm so happy you were successful! Do you know what stage you are? I was 2A (large tumor, neg lymph nodes). For me, the two months after diagnosis were the hardest because I was so consumed with fear and loss and I was being bombarded with information faster than I could process it. Every time I found something postitive to cling to, I'd get bad news like "the egg retrieval failed" or "we said you didn't need chemo but actually you do". It was hard to keep bouncing back. What was worse is that I kept hearing "we don't know what your symptoms will be or how long it will take to recover because everyone is different". I would say, but shouldn't you be able to guess based on my young age and health? But they refused to be more than vague, even about recovery from surgery. I know it sounds obnoxious, but if you have to get cancer, this is one of the best ones to get. It is so treatable compared with other cancers and survival is so much higher. Chemo was terrifying to me, and if I could give you two pieces of advice, the first would be to be honest with those around you, letting them know what you're going through and allowing them to help if they offer. The more open I was, the more comfortable people were when talking to me and the more they reached out to help. My husband was an amazing support and I made the decision to never feel guilty about sharing my fears with him because I knew if the roles were reversed, I would want him to be honest with me. You're a team! I think it's a myth that people without cancer can't understand you. They can if you take the time to share what you're going through with them. The second piece of advice I'd give is to make sure you continually communicate with your doctors about your symptoms and don't accept that "feeling awful" is just part of chemo. Sure it's not fun, but if you can get your medications right, it won't be as miserable. I had AC/Taxol for 4 months. The anti-nausea drugs kept me from throwing up, and I could eat and drink plenty, so my doctors thought I was fine. But, the psychological effect of having an all consuming nausea (AC only) that prevented me from reading, watching tv, or seeing friends was a nightmare. At first I thought "this is just what chemo is, I'm stuck with it", but after being persistent with doctors, I was eventually offered different medications and found a combination that allowed me to enjoy some things, even on my worst days. I wish I had pushed them for more options earlier. As far as recovering from chemo, I was 90% back to my old self just 2 weeks after chemo ended and now, 4 months later I'm 98% back to normal (just still in a menopause). I have tons of energy, surgery was easy to recover from, (just some cording which I got rid of by stretching), and I feel really positive. During treatment, the fear of recurrence was on my mind a lot, but now that cancer isn't ruling my life, I have taken it in stride and am thankful I have a greater than 90% chance of total eradication of the cancer. If you have any other questions, let me know!
  • tls5141tls5141 Community Member
    Thank you for getting back to me. You are the first person I know with this specific type of breast cancer and we are not too far apart in age either

    I met with a genetic specialist 3/13 and hoping to get results back soon. I am still doing the IVF right now. I was hoping to be done in the middle of this week to start chemo on Friday but after my appt this morning it looks like they won't be able to harvest the eggs until Friday or Saturday so I will have to wait until next week to start. I was really hoping to be done this week with the fertility stuff so I can start my treatment

    Im not able to get a PET scan until after my IVF. The Dr does say the cancer appears localized. After the MRI it did appear 1 lymph node is reactive to it but they are unsure until the PET scan of whether it is just reacting to the mass or if cancer is in that lymph node as well


    My chemo plan is AC 4x biweekly with taxol weekly afterwards for 12 weeks. Thank you for the advice on chemo. I heard AC is the tough part. I def wanna try to keep things as normal as possible through chemo. They said they have a lot of meds to help with side effects. They also told me I am able to work through treatment based on how I am feeling. Chemo brain scares me. Ive read and heard so much about it. It is positive to hear that you felt pretty much back to normal only a few weeks out of chemo.

    Ive been as open as possible so far with my family and boyfriend regarding my feelings and treatment. My family is very supportive but I can't imagine going through this without my boyfriends support. He has been amazing so far and my backbone. When I was first diagnosed I was scared of how this would affect our relationship. I was afraid I was going to lose him or he wouldn't find me attractive anymore with the side effects of chemo. I haven't started chemo yet but so far I couldn't be more wrong. My looks are part of my security blanket but there is so much more to me and hair does grow back. .
  • juls4juls4 Community Member
    So go glad you have great support. You seem like you're ready to tackle all of this. As far as chemo brain, the only thing I noticed was I would sometimes forget certain words, like terminology I use at my job, or the name of a town, but it was fairly subtle and could have even been a result of stress. The nausea sometimes made me feel in a daze, but that was because a feeling of overall "blah" was just consuming me, almost like my subconscious brain had recognized that something was wrong (the chemo) and was yelling at me not to move or do anything. It would trick me into thinking I couldn't do something like eat or go for a walk, when I was actually able to easily do those things. Which reminds me, I strongly recommend eating every 2-3 hours on the AC. You feel like you can't eat sometimes, but if you wait more than 3 hours it can make you feel so much sicker. I was always surprised, but eating usually relieved by nausea somewhat.
  • MSLuluMSLulu Community Member
    In addition to this great forum, you may also want to check out Breastcancer.org's forums, and Young Survival Coalition's services. Hang in there tls5141 !
  • Hey ladies,

    Im 26 years old, stage 2b triple negative breast cancer. I did 4 rounds AC, 2 rounds of Taxol (was suppossed to be 12, but my liver enzymes were too high to continue), and 3 rounds of Taxotere and just finished last week. Ill be having bilateral mastectomy in about 2 weeks, followed by 35 sessions of radiation, and reconstruction about 6 months after that. Before starting chemo, i did IVF for 3 weeks and they were able to get 17 eggs to freeze.

    Although I hate to be able to relate to anyone on this, I am nearly in tears of joy to find others who have breast cancer as young as us, since most waiting rooms/support groups/online threads are shared with women who are much older and dont share the same challenges as we do, per say.

    Id be happy to share my chemo experience with you if you are interested :)

Leave a Comment