Hi I’m new to the forum, I was diagnosed with IDC and Micropappillary, stage 3c (I think) grade 2, 5.5 cm, 13/15 possitive lymph nodes in June 2012, CT scan at that time also lite up two lymp nodes above collar bone.
I then had FEC-T chemo, mastectomy and all lymph nodes removed and am now having 5 weeks of radiotherapy to the chest and supraclavicular fossa, also now on Tomoxifen.
Now that I’m almost finished treatment I find that I am really worried about mets, bone mets precisely.
I have existing back problems already which consist of Scoliosis and a touch of Spina bifida so I’m not unused to back pain, however 5 days after starting Tomoxifen I developed a bad back - generally really stiff with some pain going down my legs. This worries me because I have heard that Tomoxifen can cause tumor flare… It did get better after about a week but it never went away completely, i have been on It for over a month now and still have mild back ache and pain down the legs.
I will be seeing the oncoligist on Wednesday and want him to give me a bone scan but am worried that he’ll just put the pain down to the Tomoxifen and say no, just can’t stop worrying about bone mets in the spine as that could be very bad as my spine is already weak. I’ve never had a bone scan done or even a full CT and just don’t understand how they can be happy with waiting for symptoms before scanning which could be a broken bone…which could put me in a wheel chair at 32 years old!
I’m probably just being a hypercondriac but can’t stop worrying, is there anyone else with a similar problem?
would love to hear any advice you may have for me 
Thanks
Hi Sumica,
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Anna, BCC Facilitator
hey
I was on tamoxfin have severe knee pain stopped meds about 3 weeks still have pain somedays are better then others I am seeing onc doc on Tuesday I am scared too hopefully it’s just from meds. Doc wasn’t happy I stopped tam meds but when u r crying from trying to standup something isn’t right. Keep me posted mabye I need a bone scan too damn this disease
mommaferg
Thanks Mommaferg, your knee pain sounds pretty bad but hopefully that’s down to the Tomoxifen, I’ll update you when I talk to those that know all…
Sumica
I’m not on tamoxifin but soon after I was diagnosed, I experienced thoracic back pain in the spine. I tried to put it down to my scoliosis and a previously herniated disc but nevertheless was very concerned that I had secondary spread. Due to 10 months of misdiagnosis, however, I was determined to get this seen. I was fortunate in that my surgeon, after quite a lot of persuasion, allowed me to have a spine MRI. My oncologist gave me the results the next day - a slipped disc - but also said that he would have refused my request. I never been particularly assertive but after what has happened over the last year, I’ve decided to be quite proactive even if it is just to allay my fears.
Good luck with your appointment on Wednesday, and I hope you get your scans.
Thanks Penguin, I’m glad you finally got your scan however I am thinking now that i may have a fight to get it *sigh* roll on Wednesday
Thought I’d give you a quick update, after a quick chat the oncoligist agreed to give me a bone scan but just to stop me worrying - don’t think he thought I needed it. However I won’t get the scan for a month and then the results another month after that. The fact that he has agreed to give me a scan has reassured me as if there is anything it will be caught, it can’t go far in the next to months if there is anything.
To say the least I’m happy
Sumica
Posted on behalf of new user Sharon
omg I am sorry to hear your feeling well. Hang on in there .I have just been diagnosed masectomy 19th april proper scarred