Am I unneccessarily stressing?

Hello, It’s wonderful to find this forum.Thanks for creating such a helpful and safe space for me to raise medical questions of concern. I am 67 years old and received my diagnosis and treatment plan on June 28th. It has filled me with misgivings. The diagnosis is Grade 3, invasive ductal carcinoma, oestrogen positive. The treatment plan commences immediately with Letrozole. Surgery is in 6-8 weeks (advised most likely the end of August) - involving wide local excursion (lumpectomy) and sentinel lymph node removal. I have been told there’s a 6 week wait for the pathology results, followed by a 3 month wait before radiotherapy begins. Of course, after the first surgery I may need a second op, followed by another wait for pathology results and a delay in treatments. My questions are: 1. Do these timescales seem long to you? Am I over-stressing about the waiting times? 2. I note that a side effect of Letrozole is osteoporosis. My mother had this condition. Would Tamoxifen be a better option for me? There may be a clinical reason for starting me on Letrozole now, but could I switch to Tamoxifen after all treatments are concluded? Thanks for your support. Tough

Dear Tough,

So pleased you have found this forum, and hope you will get lots of help and advice as time goes on.

Not being medically trained to advise you on your medication, however I’m feeling for you with all the wait times for test results, anxiety takes such a toll on. I also waited 12 weeks for radiotherapy, at the time seemed like forever.

Taking one day at a time, be kind to yourself with lots of TLC keep posting and let us know how your getting on.

big hugs Tili ???

Hiya, welcome to the forum. Glad to know you’ve linked in it’s a helpful site. It’s only natural that you’re feeling stressed, it’s a shock to all of us I’m sure when we get our diagnosis. I’m not medically trained either but been through cancer twice now. First like you back 2010/11 and reaccurrance just recently had a mastectomy. I’m 68.  Don’t worry about the time scales, I was told DCIS cancer is slow growing but they won’t leave treatment and or surgery for longer than necessary. You’ll be ok and hopefully will have good support around you.

Just a note on the hormone therapies. Ask about Denosumab bone strengthening injections if worried about osteoporosis. These may be offered to you anyway if you’re given follow up bone scans. Unfortunately I didn’t tolerate either the aromatase or adjuvant hormone therapies including Tamoxifen and wasn’t prepared to continue with the crippling side effects on me so stopped both times. See how you go with it. I have friends who have tolerated Tamoxifen fine but not aromatase and vise versa. 

Wishing you all the very best with your treatment. ???

Thank  you Tili. Was your cancer similar to mine ie grade 3, invasive etc?  Are there any other similarities between our treatments? 

Thanks for your reply, Brightside55. 

It’s an invasive grade 3 tumour, so not sure how slowly it will grow.  I will ask the Macmillan nurse.  ?

Currently, I think we’re all waiting longer for treatment than is in our best interests.  The longer treatment is delayed, the greater the likelihood of recurrence.  I just don’t know what the cut off points.

Hi Tough, 

My first tumour diagnosis was grade 3 lymph vascular invasive and I waited 6 weeks for the lumpectomy (wide local excision) surgery. Had 6 rounds of chemo and 5 consecutive days of intensive radiotherapy. My reaccurrance grade 2 DCIS with high grade foci throughout the breast I wanted to wait 6 months due to work commitments. I was offered Tamoxifen to hold back advancement of the cancer but couldn’t tolerate it as mentioned before although I tried it. The surgeon wouldn’t then let me wait 6 months and I was booked in around 6 weeks later again but was fortunate to be offered a 4 week slot that arose. 

I wonder if it might be worth you asking about Tamoxifen meantime while you wait given your understandable concerns ? 

Thinking of you ??

I meant to add that I had the sentinel lymph node and two additional nodes removed first time and two auxiliary lymph nodes with the mastectomy ? I think that if you have had or are going to have scans with contrast prior to your surgery this may help you if they show it hasn’t metastisised elsewhere. I know it definitely helped me to know and lessoned my anxiety levels ?

 
Hi Tough  

Thanks for posting. 

Decisions about your treatment plan will have been discussed by the multidisciplinary team (MDT) at your hospital. Timescales for treatment can vary depending on one’s individual situation but any delays can add to the anxiety as @Tili and @Brightside55 mentioned.   

Treatment for primary breast cancer will often involve a combination of treatments such as surgery, radiotherapy and hormone therapy, as you mention, but the order in which they are given may vary. Sometimes, hormone therapy may be given before surgery to reduce the size of the cancer, or if surgery is delayed for some reason. Your treatment team will be able to tell you more about your situation and if it’s to do with surgical delays. It’s natural to be concerned about waiting times and it may be helpful to talk to your breast care nurse if this is causing you to worry.  

You do not say where in the UK that you live. The guidelines for cancer waiting times vary according to the different UK nations should you wish to get more information.  

You mention your concern about letrozole side effects as your mother had osteoporosis. You may want to ask your treatment team if you are scheduled for a bone density (DEXA) scan, which is usually carried out either before or soon after you start letrozole.  If the DEXA scan shows your bones are already beginning to show signs of thinning or if you already have osteoporosis, you may be given another drug to increase bone density and strength.  In the meantime here is some information about looking after your bones 

Your treatment team will be able to tell you what the clinical reason was for starting letrozole and you can discuss the option of switching to tamoxifen. Treatment side effects are often taken into consideration. 

Talking to someone who has had a similar experience can often be helpful. Our Someone Like Me service can match you with a trained volunteer who’s had a similar experience to you. You can be in touch with your volunteer by phone or email for them to answer your questions, offer support or simply listen. 

You can ring the Someone Like Me team on 0114 263 6490 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer. 

We are currently evaluating this service and would appreciate your feedback. Please click here to the survey. It should take approximately 10 minutes to complete.  

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen to your concerns, talk things through and signpost you to more support and information. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001). 

If you would prefer one of our nurses to call you. To do this, please complete this form t** icking the box agreeing to a call back.** 

Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.  

Out of hours you can leave a message and we will call you back when we next open.  

Best wishes 

Eve 

Breast Care Nurse 

Please read the Ask Our Nurses disclaimer  Full details on how we collect and use your data can be found in our Privacy Policy  

This thread will now be closed from further replies. If you have any additional questions or would like to provide feedback, please start a new thread.