Please help me talk with my mother

Hi Rob:  My heart goes out to you.  It is so difficult to be separated by distance from loved ones during a crisis.  Perhaps the oncologist's office has a social worker who can help your mother discuss her fears.  Maybe she could call the American Cancer Society.  Sometimes, they can pair a patient with someone who has had the same cancer.  Please tell your mother to visit this site.  I had both chemo and rads and the people here were so supportive every step of the way.  Knowing you are not alone really helps.  When it comes to talking to your mother, my advice is to listen to her in such a way that she will be comfortable telling you the truth about how she is feeling. Validate her feelings whenver you can.  Please continue to let us know how you feel.  This time is difficult for you, too.

Hi, Rob ~ I have a 29 year old son, so my heart really goes out to you too.  I was also a lot like your Mom in believing in natural remedies for just about everything I'd encountered prior to breast cancer, and am still a firm believer in natural healing for just about everything except cancer.  I was also very scared of chemo and radiation (and fought having them), but in the end, I'm very glad I did them both.

I guess the best piece of advice I can give you is to encourage your Mom to seek a second and maybe even a third opinion.  Coming around from thinking naturally about our health is sometimes a process, and your Mother may need to hear reasons and opinions from more than one oncologist.  They may also have slightly different recommendations about what treatment she needs, which would give her some choice in the matter.  While radiation therapy is pretty standard for an invasive bc that's been treated with a lumpectomy, depending a lot on her specific ER, PR & Her2 stats, as well as the results of an Oncotype-DX test, I'm thinking some oncs may not recommend chemo for her.  There are also several different chemo regimens -- again, depending on her specific stats.

Do you know if your Mother has been to an NCI-designated comprehensive cancer center? Here's a list.  I think there's one in Buffalo (Roswell Park), where I'm sure she would get top-notch, state of the art advice & tx:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

As far as timing, research shows no difference in outcome for those who start chemo up to 2 mos. after their last surgery.  So she still has time, but she really needs to figure out what she wants to do ASAP. 

If I can help you or your Mom any further, feel free to PM me.  There's a message feature on a page you get to by clicking on any member's avatar.  I'd be happy to talk to your Mom on the phone if she has questions I might be able to answer.     Deanna 

Rob, are you sure they said four months off radiation? 6-7 weeks is standard in the US.



Is there anyway young could get her to md anderson? They have a great integrative medicine center. I wonder if she could get finabcial help with rent. Even an angel might be hard to live with, but the weather will be so much friendlier, as long as she misses the summer.

I probably would talk cold turkey with her.  Which is that her chances of survival are about 50% if she goes the "natural" route and better than 80% if she gets standard of care treatment.  It's not an either/or situation as others have pointed out.  It's that cancer is one time when you don't fool around.  Important that she understand this.

Chemo and then radiation (~six weeks of radiation).  No, not fun, but we get through it.  You really have to think about how much you want to be here long term.  I was ready to spend five months praying at the porcelain altar, if that was what it would take.  Fortunately, only once, and very briefly.

Some women have trouble understanding that they really need full blown treatment because nothing else in the body is affected with early stage breast cancer (even if regional, not local).  But you do because those cells can travel.  Something else to think about.

Your mother will also most likely need hormonal therapy of some sort, but get through the chemo part first.  One step at a time.

One final thing I would do is make sure she goes for a second and even a third opinion.  Think important that she hear this from more than one doctor, preferably at Roswell Park.

Good luck.  I am sorry that she spent money on the herbal stuff, but still time to do the chemo/radiation route.  Glad you are there to intervene. Congrats too on your studies.  We need more talented, dedicated people, and think you will do splendidly. - Claire

It seems that your mother does not want to do chemo because she is afraid of the effects and horror stories and not because she insists on going natural.  SO I think that is a good thing.  I think she realizes it would not be in her best interest to not have chemo and radiation.  She can always use all those items she purchased in addition to the chemo.  You can tell her about my chemo experience and I can write her a letter directly if you would like me to (private message me). They have a lot of medication now to prevent nausea and vomiting.  It is not the way it used to be years ago, well at least not for most.  I would say I breezed through my treatment for my stage III cancer.  I had the TCH regimen and then 33 rads.  TCH is Taxatere, Carboplatin and Herceptin (I am Her2+).  I would feel a bit tired after the fourth day of treatment.  But I never got sick, never needed to be hospitalized and never needed a blood transfusion even though I became anemic.  I had the shot they give you to boost your white blood count.  The shot itself hurt and it did cause some minor aches in my joints but not too bad. Yes, I lost my hair and this was very depressing. But all in all, the treatment is barely a memory now. I have known others who have gone the natural route for their aggressive cancers and they did not survive. Good luck.

Rob, I had Taxotere & Cytoxan (TC) x 4, which is considered a 3rd generation chemo.  I did not need a port or pic line (and I didn't want one), but that also depends on an individual's veins.  For the most part, the newer generation chemos for early stage bc is not as rough as some chemos for some other cancers.  And as someone said above, there are plenty of meds to prevent nausea. The worst SE, especially for those of us who are a bit older, seems to be severe fatigue and muscle weakness, but even that isn't the same for everyone.

For me, radiation was truly a piece of cake.  The worst thing about it is the daily commitment, although it's usually about a 15 minute appt. But I had none of the sometimes reported fatigue, and just the very slightest skin irritation (like a bad sunburn in a very small area) in the last couple of days.  That went away in about a week.  Your Mother just needs to be sure that she chooses a radiation oncologist with extensive breast cancer experience at a facility with the newest generation of equipment.  

Although none of us wants chemo or radiation in our bodies, doing a short course of either or both to ensure that stray bc cells don't survive and later metastacize probably isn't nearly as bad as your Mother is fearing.     Deanna

Rob, getting at least a CATScan prior to chemo makes sense -- just to be sure they have a full picture and she's getting the appropriate tx.  Of course it's worrisome, and she will no doubt hold her breath until she gets the results, which hopefully will be all clear.

While it's true that a family hx can be an added risk factor, the truth is most women who are dx'd with bc have no family hx.  And, although I don't know the specifics of her situation, I might disagree with her oncologist re. the HRT.  It alone may not have caused her bc, but feeding our bodies synthetic hormones (which I also did for 15 years) certainly seems like a huge contributing factor to me.  OTOH, I also tend to believe that no one factor causes bc, but that it's more a combination of all sorts of stresses (perhaps individual to each of us), that tips our immune system to the point it stops doing its job and allows bc to start growing.  JMO...    Deanna

The kind of chemo the give her will depend on the results of her upcoming tests so it's hard to say yet.  She'lll probably be given a taxane, along with something else, but it's early yet. I did taxotere and carboplatin originally, and because I'm HER2+, I did herceptin.   There are more than 30 different kids.  

 Of course, hair loss is a terrible side effect for all women.  Not all chemos cause hair loss but the ones she is likely to get will.  The one I'm currently on does not, but once you are my stage they take quality of life into consideration a bit more.

I never had nausea with any chemo.  Fatigue is usually caused by anemia and that doesn't happen for a few rounds when it starts messing with your blood cells.  Bone aches are a definite possibility and her doctor can give her meds for that.  Constipation is the more likely stomach ailment and that can be dealt with.

Take it slow, it sounds like her doctors are doing the best for her right now and I'm sure it'll all be fine.  You'll both feel better when there is a treatment plan in place. 

By the way, I'm a FIRM believer in drinking lots of water, especially during chemo.  I think maybe that's why I've never had any bad side effects - I stay very hydrated.  I also am a fanatic about eating high fiber, healthy foods. 

Rob, what you're feeling is totally normal.  For most of us, the very beginning is the worst.  Once a tx plan is in place, things should get easier for both you and your Mother.

As far as which chemo is most tolerable, Adriamycin can be hard on our hearts.  CMF is sometimes thought of as a "lighter" chemo, and Abraxane (if one's insurance will allow it due to cost) is basically a Taxane (like Taxotere and Taxol), but without certain preservatives, so more gentle for some.  Assuming your Mother goes ahead and does chemo, she needs to be pro-active and not afraid to ask questions about what is being recommended and why.  

Without going into detail, there are guided imagery CDs to help with the fear, and cold caps to prevent hair loss.  I used the CDs, but didn't learn about the cold caps until later.  You can learn more about both by using the search feature (to upper right).   

Hope this helps.  Oh, and if you're interested, I can direct you to some on-line info' on chemotherapy for bc out of UCLA that talks about the various options, research studies, etc.  It was info' I found helpful when trying to wrap my head around doing chemo.    Deanna 

oh, I had a mediport, wonderful, no issues. 

Rob, I am 62 and was dx in March of this year.  I did not want to do chemo, but after seeing the stats and the recurrence rate with out it I decided it was a good insurance policy for me to take out.

I have had a mediport put in and it is great.  I have had 4 tx of AC and just had my 5th weekly tx of Taxol which will last for 12 weeks total.  I had no lymph nodes involved so I was able to have mammosite radiation.  

Please show her this site and help her to find info she needs.  You are a great Son and I am sure she is very proud of you.  

Rob,

Sound like everyone is giving you good advise here. I would like to add a few things as proper treatment of side effects is taking me from staying in the bed to back to work. Taxanes cause neuropathy. My old oncologist did not treat it. I am now working 3 days a week. To get the other days in because of pain, I am going to palliative care for a plan for 24/7 narcotics with some meds to help me stay awake during the day. I wouldn't bring up palliative care with her, however I can tell you what my docs say. The better I feel the happier I am. The latest studies are encouraging palliative care early to help us feel better.

In your mothers age group, they think that side effects are something they just have to endure and don't complain. With you being out of town, she will hide stuff from you. That is what I do because my children out of state cannot do anything. If she knows what kind of chemo she will be on, let us know so we can help advise with side effects. Either way Zofran is what I found to help with nausea/vomiting without making me tired. Some docs give compazine and it made me tired and gave me the zitters. Kytril works even better, but makes me tired, but no jitters. There is a generic zofran now.

I changed oncs in the middle of treatment to get treatment for side effects which has taken me from being in the bed to back to work 3 days a week. This also helps with depression!

Taxens like Taxol and Taxotere causes neuropathy. Gabeptin majorly helped me with that. I can walk again and feel my hands and feet. My new onc will call it in for me and increase it once a week as needed. My old onc told me to go to a neurologist for treatment. Chemo can also cause pain,diarrhea make sure she has narcotics. . Narc can cause constipationMurlax is a good thin gto take for that. They almost booted me off a vaccine trail i am on because of grade 3 diarrhea causeing dehration and then mild left atrial enlargement. I went to a GI doc who said Murlax. She can take it any time of day and it treats both constipation and diarrhea. The generic is $9 a month, send it to her in a care package. She can also take other meds at the same time except for synthroid. They may advise Senkote for her, another care package item. My sister sends care packages that lives out of state. I like them. There is also a prescription antodiarrheal, lomitol. I find it better then Imodium. It diesn't put a bad taste in the mouth. Some chemos cause dry mouth. I prefer the taste of the act dry mouth wash over the other stuff. Also a fluoride rinse, ACT has one), is what my dentist recommended to help protect my teeth at night. Some chemo cause acid reflux, Prilosex or something along that line at night.

I also got some nice pjs in the care package. Others will chime in on care package items.

If he points her to this thread then she would not talk freely. I say things on this site that I do not tell or say to family or friends. This is a private place for everyone, including Rob, to talk freely.

Hi Rob,

I think we are going too far out.  I would be scared witless if I read this thread.  So the first thing is to get a firm diagnosis and treatment plan.  Then learn what you need to learn about the course of action she will be taking.  If she is in robust health, that will help her greatly.

Her doctors should be able to manage side effects for her.  Important that she do this.  My trip through chemo was uneventful, and I was able to do my consulting work.  I was able to exercise and made sure I did this every day. I ate relatively normally, although my taste in food did change.

I know I got off easy, but important you understand the other side.

Good luck.  Not a fun journey ahead, but not the end of the world either.  I took that view, and think it helped me see a great life at the other end.  I got there. - Claire