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Breast Cancer Haven
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Scared and Need Help, Please

I am a 5x cancer survivor including cancer in each breast. The Saturday before Easter my mother showed me a lump on her left breast. Called primary 1st thing Monday morning and he wouldn't see her until Thursday. Also would not write script to go to Roswell, a national cancer institute about 10 miles away. He blew it off as just being fatty tissue and small, even though it protruded and was visible without palpitation. Sent her for Mammogram Monday 4/29. Radiologist was concerned enough to follow up mammogram with sonogram and said tumor is 2 INCHES long - wanted to send her for biopsy ASAP but docs had gone home by that time. Called primary today and he refuses to write script for biopsy until he sees her on Friday. When I told my mother, the look on her face was pure devastation. Now having per home care nurse get doc to write script. My last b/c was 2009 and I want to present all the options to my mother since she does not want to go through what I did with chemo and being so sick. Also want to help calm her. So if anyone can treat me like a newbie and explain a lot of the advancements, I would deeply appreciate it!!

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I'm guessing you're across the pond, I'm in the UK and my cancer happened in 2013, had lumpectomies then at oncology appt I was told they were running a trial as a lot of people go through chemo without needing it, the trial gave me a 1 in 3 chance of not having chemo.....it worked I had 3 weeks radiotherapy and hormone tablets, every mammogram since has been clear, not sure if this helps you or not, sending best wishes to you and your mum xxxxx

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Jennymary, Thank you. Every bit of information I can give her to show that chemo is not as awful as when I went through it helps a great deal to calm her fears. Yes, we are in the US, but many of your meds are available here.

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I also have a 2 inch tumour. I am taking Anastrozole and a new drug ribiciclib (Kisqali) which hopefully will shrink it before surgery.

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Hi Bluemoon46 Could you please tell me if you are having any side effects from Kisqali, and if so, what they are? I forgot to mention that my mom is really scared about chemo of any kind because she watched me go through it and way back then it was awful. I am trying to reassure her it is not near as bad with all the advancements! Thank you so very much !!

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I am not some one who dwells on side effects but I do have a little diarrhoea now and again. At first it made me feel sick but not now and a little light headed. Nothing major.

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Hi people can be lucky and avoid chemo as they do the encotype test on the tumour, that gives a score and depending on that score they advise chemo or not, but if her2 or triple neg type cancer it will be chemo unfortunately.

Hope all goes well for her xx

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Thank you so much for your input. It is very helpful. The more information I gather, the better she will be informed and can make a good decision. I hope you stay cancer free !!

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The newest test is MammaPrint and tests 70 genes whereas Oncotype only tests 40. Once also gives a low, high and middle but MO only gives high or low so you don’t have to guess. My MP said I was high risk so did chemo. Just like Margot says, you lose your hair ((which was very freeing) and the anti nausea meds helped. I learned two things: focus on all the good in your life and don’t try to control the timeline. I was just laid off when they found it but I was grateful for the freedom to focus on my health not worrying about a job. I also had awesome ins. I kept trying to set a timeframe for finding a job...and learned a lot of patience.... best wishes for your Mamma.

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Hi I am 18 months on from Chemo I can't say it was pleasant but I was given anti sickness meds and they worked I did not experience any sickness I lost my hair and stuff but that comes back .Your mum is your mum and saw her child go through things she could not prevent and that feeling is awful .She now needs your support and she will get through it with the support of her family and her medics .Cancer is is the scourge of our society but the treatments although unpleasant work and I wish her luck and love and in 18 months she can look back and feel proud she did this and life can again be good xxxx

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Hi Margt34 Thank you for responding. Your answer is very helpful. I am glad that they managed your side effects - it sure has changed since I had b/c. She has 100% of my support!! Ultimately what she decides to do is up to her, but I very much want to make certain she has all the information possible before making that decision. Her primary is turning out to be a jerk - I am afraid that he will scare her out of treatment, so it is up to me to counter that. As usual, I have to take the lead and gather the info so she can make a good decision. May God bless you and keep you cancer free !!

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Hi Andean, sounds like you are doing a great job supporting your Mum.

But remember it is the medics job to provide the information and treatment options and for you to help Mum understand them, make her decisions and be there by her side.

I went through breast cancer. Operation, chemotherapy & rads, a couple of years ago and it is hard but the modern anti-sickness and other meds are very good. The point about chemotherapy is that it is used or not for different reasons and in different strengths - to shrink a large tumour so that operating is more effective, to control (slow down) cancer that has already spread or to act as a preventive to it reoccurring. Chemotherapy to prevent reocurance is just a matter of population level statistics. How much is a reduction of the risk of reoccurrance in the next 5-10 20 years worth the short/medium term trauma and side effects that an individual will suffer.

You don't say what age Mum is but talk about "home care nurse" does that mean she is more mature?

I supported my Mum through her 3rd case of Bowel cancer when she was in her mid 80's and in early stages of dementia. She did eventually end up with a major high risk operation which she came though and a colostomy. What was clear though throughout all our discussions with all the doctors was that they don't want to do anything where the risks of treatment do not out way the benefit. Possibly buying 10 more years of life in a 90year old might not be worth a year of treatment now.

I assume that would be the same in the USA even if you / insurance co are paying? Sometimes less treatment is the right option. They would not offer Mum chemotherapy as the oncologist was quite clear that at her age and with a less than great heart she would very likely not be able to withstand the treatment. ie the possible benefits didn't outweighs the downsides. On reflection and having subsequently gone through chemo myself that was the right decision. My mother "lived well" cancer free with her dementia for several more years and died unexpectedly but I'm sure contented of a heart attack in her sleep a few years later. She had been down to the gym for her group exercise class the week before and eaten dinner with family the evening before!

Whatever happens with your Mum I'm sure that with you by her side she will do well. Be there, be informed, but help her to be guided by the medics.

Best Wishes

Mary

X

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Mary, thank you for the response. My mom is a very spry and active 84 with full control of her mental faculties. She is out and about just about every day. The home care nurse is part of a special program with the insurance company to have someone "cheaper" keep an eye on things and comes about every 6 weeks unless called. Very often the nurse bypasses the doc by making sure things are as they should be. My mom has decided to not go through the same or similar chemo that I had because the sickness is not in her best interests. However, there are many "chemo" drugs that can shrink the tumor, help prevent mets, and extend life by years.

I'm after info on the drugs that will do that along with the side effects so that she can be very informed when it comes time to decide on treatment. Information from other patients that use these drugs will make her feel better about using them instead of reading a long list of possible side effects.

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Hi Andrea. When your Mum gets a pathology report on the tumor to know it's grade, it's stage, & if it is hormone receptive, protein receptive or triple negative then people might be able to help with comment on the specific drugs they were given & their side effects. Athough there is some overlap in treatment and or preventative chemotherapy for each type in UK the pathology will drive the choice of drugs used. Not sure how long ago your last chemo was but my experience of the anti sickness meds that I was given in UK is that they are very effective. Ondansitron is the one I given ( not sure if that's a generic name)

Good luck & sounds like Mum got a lot of good living to do.

Mary

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Mary, I completely agree that knowing the pathology would help, However, I'm fighting her fear and have already made a little progress by sharing the responses so far!! She is feeling a little more hopeful and is a little more open to listening about options that are not horrid instead of saying "you don't know that" or "that is for lung cancer." At least she is thinking about exploring options, which is progress. I don't want her to decide to refuse treatment because she can be stubborn and trying to change her mind after it is made up is far more difficult.

My last chemo for breast cancer was 2009, and even though they modified it because I had liver cancer in 2002, the liver did not tolerate the chemo very well, I was horribly sick - had to have 4 surgeries in 10 days to keep the liver working. She remembers all of that, and was focusing on how awful that was. At least now she has a little info about the great strides in treating breast cancer from someone other than me.

Ultimately the final decision is up to her and I will accept whatever she decides, as long as it is a well-informed decision.

Thank you for caring and listening!!

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Hi there

I strongly recommend you get Jane McLellands book How to Starve Cancer. It’s not about diet (altho that’s important too) but starving the cancer with off label

Drugs. You can also check chrisbeatcancer.com for Janes interview. I say also not instead of! Her book is gold dust.

Also extraordinarily important is to slow down. I am not belittling the diagnosis, like you I have had recurrences and bc 3 times. So much panic and fear is creating stress which it’s paramount to avoid. You have survived and your mother has equally good chances of doing so. This is very good news. Take a breath, do something fun together, enjoy each other’s company. Thursday/Friday will

Soon be here.

Diet is also important as I’m sure you know. Cut out sugar and dairy and red meat. I do the raw vegan for best results but recognise it’s not for everyone.

If you want to chat , particularly on the slow down element do reach out personally.

Fx

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Ps I’m in the off label drugs with NO side effects. Look up Care Oncology Clinic for details xx

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